June Newsletter

Hello to June everybody. Those of you in the top half of the world will be laughing while us suckers are struggling with the cold. Such is life !! We have agreed to get a local company to double glaze all our windows and insert Argon Gas in as well. The sooner the better I reckon.

 

Once again I have to say our condolences to America for the tornado attacks in your country and I seriously hope no members were involved

  

Just two days ago we got another german shepherd pup. It is 11 months old and the breeder found her too large to show. Already she has turned our world upside down. I get woken up by a huge wet lick in the mornings !!

 

With all the emails it is obvious that some of you can’t get to grips with this SS thing, so continue to ask me questions, I don’t mind.

 

Just yesterday I had another very regular fall, this time in our kitchen on African slate floor. Back, bum and head paid for it !  The slate was very hard on the nut 

 

Amazingly no-one is commenting that we are now a 100- plus member group. I see on the American facebook front page there are 12 people mentioned as being partakers that have never contacted us but admittedly they may not have SS. Matt wants it again brought to everyone’s attention they can sign on (https://www.facebook.com/groups/358154280899208/) to extent their education and obtain contact with other SS people, some of which are not in our Support Group.

 

Jeepers creepers, since I wrote about that fall onto the African slate floor I’ve had three more falls – two in one day actually.   I really must book in a coffin!

 

Blodwen

 I’ve had some emails from America and the only  idea they give is their signing off name which I swear is a surname of Blodwen but she says her 87 year old mother-in-law has just been diagnosed with SS. I believe that is the oldest person I’ve heard of to be diagnosed.

 

100 and not out

 I made a mistake a few weeks ago and didn’t include one new member by the name of Lesley so we can safely say there are 100 of us survivors in this group. I’ve already emailed Lesley direct, but I do so here again.Mind you, I still have a belief that some older members have left us but no family member has bothered to inform me.

 

Mary 

Mary from that marvellous city of New York  shares her fantastic news after being on Ferriprox for one whole year now.  Her’s Dr Levy’s report to her.

 

 I reviewed your MRI and compared it to the 2011 scan. I don’t see a significant difference. The MRI you got this time included a sequence that shows the iron much better so from now on we’ll get to use those sequences to compare. In 2011, you had a sequence that’s a little inferior for looking at iron. You also had that inferior sequence done this time so comparing those two, I don’t see much difference. But, it’s important to note that you don’t have much iron there to begin with. On the spectrum of all my patients, you have only a little iron in your brain. I’m more hopeful that we’ll see a difference on the next MRI comparing the superior sequences.

 

Well done Mary and may you notice permanent improvements very soon.  Meanwhile you really look after yourself.

 

Stay Still

 MY hand wobbles have become exceptionally bad this last fortnight.  Just this morning  I was running between both computers in our house and wrote  down one members email address stored on mine but when I got to Trish’s I couldn’t read my own handwriting. What a hopeless idiot.  The part of my brain responsible for this needs to go before one other SS group for elimination.  – the one that performed horrible deadly things in Germany in WWII  !

 

Tinnitus

 At some stage of your SS life you simply must suffer from Tinnitus as it is fuelled by damage to the cochlea. It may come to you in one or both ears and may sound  as a hiss of various forms, a ringing,a whistling or a  long series of clicks. The sounds may vary greatly in pitch from a low roaring noise to a high pitched squeal. Several different noises may compete against one another. I have experienced five distinctly different sounds at one time in one ear.

Sometimes a dentist is able to provide extreme help by realigning your jaw or even adjusting your bite.

Over time a person’s acceptance tends to lessen  the sounds. Also concentrated training of the brain has been known to stop thinking about the problem. Although no one drug has been created to cure tinnitus but there are some drugs for certain illnesses have the great add-on benefit of hiding tinnitus sounds. This very disruptive side effect of SS is without question very unpleasant. Good luck everyone as you try to live with the effects.

 

In my own case since stopping wearing my Cochlear Implant my own tinniuts has changed considerably.     It is now restricted to high pitched volumes and only two forms of noises whereas previously I may have had up to 5 different sounds all competing against one another.    Now I only get a sicata squeal  sound and another like compressed air being forced out. From that one can only assume that a C.I.has considerable affect on tinnitus.

 

Q & A with Dr Levy

 During this past month I’ve had email conversation with three different members about the shortening of our lives. I was able to answer some questions but to clear the air I put some to Dr Levy    

 

Why should some SS members expire in their 4th and 5th generations while others go to the 7th and beyond ?

 

Because SS is so slowly progressive and patients usually present late in life, the life expectancy for most patients will be normal or near normal (70s). The problem is the disability the acrues over the last decade or two of life.When younger patients present with SS, they may have a potentially shorter life span but that depends largely on the cause of the bleed. Aneurysms are more likely to be fatal than a dural tear in the spinal cord. 

 

Following on from this thinking  does the medical profession  have accurate knowledge about the life span of an SS-affected cerebellum ?       If a person’s cerebellum is dead what symptoms can be expected ?

 

You can live without a cerebellum. If you cut the whole thing out, you will have severe balance and coordination problems but your lifespan will be normal.

 

 To be honest his  last reply was certainly not what I expected.  I was expecting something like ” research tells us the cerebellum of a severwly affected SS person will shrivel up and die within …. years and once the cerebellum has stopped working a patient can expect ……………………………..

 

Thank you though DrLevy, I’m sure those three fellow members will appreciate hearing your comments.

 

Trippin’ Craig

 We wish Craig in Christchurch, New Zealand well for 4 June when he goes into hospital for a lumbar puncture and MRI for this country’s ground breaking allowance to be put on Ferriprox. Once Craig reports on his progress I’ll love to see if medical personal thought it worthwhile for me try taking it.   My thoughts are I’m too far gone.

 Craig and his lovely wife had a glorious time in Brisbane, Australia catching up with family and being typical tourists. They didn’t get to seeing my tiger at the dreamworld establishment but did get to a Wildlife Park.

 

Swallowing

 Just two days ago I had an appointment to see a visiting Speech Therapist at our local hospital. I was imagining she would have me saying the vowels while she listened closely but no, she was only interested my swallowing ability and my eating habits. Actually she was the best I’ve come across re eating and she handed over lists saying what I could and couldn’t eat. Most steaks ,for instance, are a no-no.   She insisted on some unusual things such as cutting grapes in half before eating them.

 

SS life is full of interesting things folks !

 

Her comment was the more strokes people have the more worrying it is. I’ve now had two !

 

John  

 I must mention John of just outside Sydney, Australia for his email as John is one member I often wonder if he is still upright on this earth.He appeared before  40 neurologists and 6 trainees recently to discuss this SS of the CNS thing. Good one John for spreading the word.

 Recently a leak was found on his spine and this was ablated. Soon John will have been on Ferriprox  for  3 years and he reports on great improvement to everything except balance. John is thinking Stem Cell  Therapy as a hope of hugely dealing to the  cranial nerves in hope of curing them.

 

 

 Look after yourselves very well through June everyone.

 

Dave

February Newsletter

Apologies

I must say to keep the peace  that I’m terribly sorry the February newsletter did not go off on schedule.  I’m just home after a fortnight in the Rehab. Hospital down south in Dunedin and desperately trying to maintain catch-up.    The month of January was the quietest month ever for hearing from members but come Feb. many came out of the closet pointing out they received no newsletter and I’m grateful that my wife replied explaining. SO now lets get on track again.

Farewell

 

On either the 2nd or 3rd February at 4 a.m. Mike of Los Moloinis California  left us for a much nicer place.  This past 12 months he had been too sick to email me and his dear wife became the coresponder and in his final months on earth when decline set in. Lautetia, collectively we pass on our sincere condolences on your huge  loss.

Welcome

Now we have two new members but I’m awaiting valuable information about their ages, places  of abode, their SS trigger if known. With some great fortune I’ll introduce them next time.

From the Editor

 

Yes, I have just returned  home after  12 days  in Hospital.  As its name suggests they were most interested in helping me with   Rehabilitation not day to day medical problems associated with SS  although I persisted until some things were addressed and as a result on  4 occasions was taken down hill to or  regional hospital  for sxans, XRays etc.  I get home and another appointment card for the 4th April was waiting for me.

 

All the staff – doctors, physios, OT’s etc were lovely people and that helped the tmie to pass by.    My ability to swallow met with considerable concern since my stroke in the week before Christmas Day.  I am still standing  even if  I do experience considerable ataxia but hey whats new !!

Thank you to those who showed genuine  about  my apparent  getting lost.

Polypharmacy

Only recently has this term been fired at me  but what it means is that the person  has multiple medications and usually refers to someone on 4 or 5. Me on some 15 -18 tablets and another half a dozen things means I’m most definitely in that category. Another word often associated is pill burden which this last month is also me.

Hilary Clinton

 

It took a couple of emails suggesting Hilary Clinton may soon be a member of our little  exclusive group but   I think we have to never forget  just because a person has an aneurysm or similar, they are not definitely going to take on . That only happens to a very few people. I say ‘short strawed’ medical patients, but yes even she may be susceptible to being hit with SS.  Also bear in mind it probably wouldn’t happen for many years- up to 40 years in fact.   Such is the animal we took on board.

 

No control

One unnamed member tells they went and sat on the toilet at 3a.m. recently and their spouce had to come in and waken them up again.  Not really a good place to drop off  but anything is possible with SS. Twice now I have slept in the  dentist’s chair as he operates on me !

The same member said about falling down stairs inside their home. Now that is a regular occurrence for some.

We have only one set of steps in our place which is from house to garage and I’ve twice fallen down these.. Only four steps but more than enough.

 

This from Mary in New York- her own creation

Life has a funny way of handing you lemons. Sometimes you get one or two. Sometimes you get a bushel full. But it never wanted you to make lemonade. That’s too easy. What it really wants you to do us cut them in half. Suck slowly on each and every one, then plant the seeds to grow a new tree.

 

Please everyone enjoy what is left of February

 

Dave

December Newsletter

This month’s welcome is to Jari a 46 year old who is between countries -Canada and Australia. He was only diagnosed earlier this month. His trigger was the removal of a tumor 11 years ago. Already Jari is on a cane and I’m certain is the one of the first members ever to report that he has Anisocoria – one pupil larger than the other. He tells me his wife first picked this up. Other side effects which he sports are very typical SS.

As Jari is an ex-Finn I have asked Tommi another ex countryman to make contact with Jari who has since replied that he and Jari have had excellent discussions.

Ravings by the editor

I watched an interview with a lady with disabilities on tele the other day and she commented that nowadays in reply to someone asking how she was, she simply said ‘fine thanks’ even though she really was is agony. Over the years she said she would tell people the truth, they would half listen, then spout forth about themselves. My own way of getting around the same sort of thing, is saying ” I’m still alive thanks.”

I suppose most of mankind are like this and our comments could just as easily be ” Nice day, isn’t it.”

In my case, if I’m talking to a medical person, I’m forever flying the SS flag and try to educate. One day, I’ll hit the correct person who can further educate me and that would be out of this world of ours.

Of late I’ve had several fellow members ask me ” how really are you ?” and I appreciate their concerns. I’m not sure that in going into explicate description about three dozen symptoms that I’m harboring is going to help those fellow members and I’d rather be in discussion with things that are upsetting them at present.

Typical me, I spent thousands of dollars buying racing Chevy four cylinder parts recently and one came with huge troubles. It is a 1920’s USA Ed Winfield racing carburetor which apparently is only half complete. Some parts were well and truly missing. Its so nice that a 75 year old american man is trying hard to help me get sorted and I’m very appreciative of his efforts. Thank the Good Lord for genuine nice people still living on our planet. The missing parts have arrived and are nicely fitted.

As that big Christmas Day is in our minds as it very quickly approaches I’m wondering what Santa is going to drop in with this year. He can land his sleigh on our front lawn no worries, and he only has a couple of yards to go to reach the ranch slider which we’ll leave unlocked. Not that I need anything much though Santa. A perfectly operating body would help tremendously if you are into supplying those things !

Melony

Melony of  Arizona, was first to reply to November’s newsletter. She comments that the temperatures are continually getting colder there and within a few days she will be into a jersey . We are the direct here Melony.

She describes her balance as ‘challenging’ and with the help of a trainer is strengthening the legs. Melody does have a walker but is leaving the usage of such for as long as possible.

Melody is another wearer of a Cochlear Implant which is not providing maximum assistance and like me she avoids getting into group situations. The one-on-one is preferred. Another remapping session of the C.I. is due next week.

Swallowing

Yes, I’ve said it before, we are not greatly interested in one particular symptom until we have it ourselves and I’m no different from the rest. This past week I have experienced endless troubles, and one new one to display itself is swallowing difficulties. Sure for months I have did troubles but nothing like this past week. At one stage I spewed all over the table the result of trying to drink a simple glass of water and I developed coughing and spluttering. Trish wrote me a note on my whiteboard saying to kindly die quietly with much less mess for her to clear up afterwards!! lovely ! I am finding myself extensively slow eating these days when I was always the first finished.

I see swallowing is a by-product of the 12th cranial nerve not working properly and it goes in hand with failure of the motor innervation to the tongue. To date my diction isn’t too bad at all but my tongue and lips are somewhat AWOL.

The SS Ladder

For the first time ever I think I’ve gone down two rungs at once on the ‘SS ladder ‘as my sacked neurologist called our SS deterioration. Yesterday we made the 35 mile trip to town and my first job was to see a new General Practitioner as we call them, but general family doctor is probably a better description. The poor man gave me something like 45/ 50 minutes of his time which ate into his lunch hour. In full truthfulness it was still nowhere long enough long enough to discuss everything and as I have found out over many years of seeing doctors, a huge number of the problems you explain are never addressed to the extent of getting the required help. I gave up attending one doctor centred at another clinic and this appears to be a most worthwhile move.

If I said I had a thousand and one things wrong I would be exaggerating, but if I said a hundred and one, I genuinely aren’t. As well as meeting this doc, I did several other calls on this rare trip to town, including going to the pharmacy to get such a huge number of prescriptions. It was very pleasing to find he was much more generous in the allowance of certain items in the fight for the causeand in the case of some medication doubling daily intake.

Next day I knew for sure I had jumped down two rungs on the ladder with advancements in deterioration. I had two or three falls but only one really good one with thankfully yet-again no injuries. Some symptoms have worsened and I guess only time will see if they return to how they were immediately prior to that fateful day, but I’m quite certain they won’t.

The Oldies Have it

Just this past 10 days I have been in continual email conversation with a 75 year old american man who takes his streamed lined four cylinder Ford machine to Bonneville Salt Flats every year to lower the World Record for his class. He tells me at next year’s event he WILL go up to 210 m.p.h. The powers of positive thinking mister.

I see in today’s paper a retired 76 y.o. University of Otago (50 miles south of me ) Professor of Physiotherapy has had a gorgeous looking 19 metre ( 60 foot ) yacht made at Maine, USA so he can sail solo non-stop around the world. 44,000 man hours went into creating this yacht and one must surely be amazed at that effort. The kiwi designer who has been involved with many of our Americas Cup, etc boats, has incorporated several aspects he considered essential for a man of this age on his paddy lonesome.

These are both excellent examples that age has no hinderance in achieving what you wish to set out for. Of course, you know I’m going to say it, but the same applies to us even more as we march the SS- route. We must NOT lie down and permit life to trample all over us. We ARE survivors after all.

Peripheral Neuropathy

Peripheral Neuropathy is another term used by the medical world and following email conversation with Monica, wife of SS Derek in the UK, I thought I’d better be sure of its exact meaning and Trish asked Cathy our own physiotherapist and receiver of these newsletters.

Cathy’s words were : It means away from the body and refers to outer parts like feet and sometimes, but rarely, hands as well. She said probably the most common example is foot drop. The word neuropathy means nerves not working usually from the spine, not the brain. It is used as a pretty general term however, and doesn’t really tell anyone much.

Thank you Cathy.

Zachary

Z, our youngest member at age 10, lives in Tennessee. His parents have him under an alternative Chiropractor who is doing wonders controlling his pain, something Z has not been worried with now since July. All to do with his whiplash. Currently mobility is the thing being investigated and addressed.

His parents contacted Dr Levy who made this declaration that many members often fail to get their heads around :

Many of my patients accumulate iron for decades before they have symptoms, other have symptoms within a few years. Some patients have iron in their brain discovered incidentally and they have no symptoms! There is no way to predict for your son. Generally, hearing loss is the first sign of superficial siderosis so that’s one thing you should be looking out for.

All the very best Michelle and Robert as you help Zachary along the SS highway.

Lost and Found

When we had unsuccessful real estate Open Days here several times I threw hundreds of sheets of paper into one certain carton and promptly forgot all about it, re-finding it only yesterday which required much reading to catch up on things again. Two notes from members I suspect I was to reply to and have done so today. I’m sorry people. There are many relevant articles as well, so I’ll pick up on some.

One which obviously tickled my fancy back then was mention in Goggle of ‘Superficial Hemosiderous of the Central Nervous System’ which is just one other name for what we are collectively fighting. Prior to the 1960’s, from memory, SS went by various titles and even in the early days of this support group one certain member, who has since passed away, would very regularly try and scold me for using the title Superficial Siderosis. Isn’t life varied !

I also printed out a page, I suspect off Google also which said specialists use the test Hallmagyi-Curthoys by making the ‘s head forcibly and rapidly moved from side to side and the examiner closely watches the eyes to see if they follow suit at the same rate. It tells the examiner is the patient’s eyes compensate to maintain vision still. Technically speaking if all is well the patient should be able to maintain looking at a central point while this is being carried out. Probably all of us have undergone this test, I think its the first time I read its name.

This is one test done on me dozens of times in days of yore. If only some medical half-wit would carry it out nowadays. They would need to strap me into the chair on which I’m supposed to be sitting.

I also found an email dated 2008 from Kerry in New Mexico , which was accompanied by a reply from Dr Levy explaining to Kerry that her numbness in her legs did not surprise him in the least as it was very SS. All to do with SS Myelitis being slowly created. I think in those 4 years truckloads of us know very much about this symptom now, certainly me included.

Another article was all about Auras and I do remember addressing this subject earlier the year.

The last to mention is an article on Oscillopsia which it goes on to say ‘is a visual disturbance in which objects in the field of vision oscillate or jump about’. It is attached to many neurological disorders and can be just mild or quite severe. It is linked with nystagmus as this may be the cause of it.

Just more reasons friends, why really expert specialists are required by us all, even though they can’t wave a magic wand and suddenly we are hunky dory again but it does sometimes mean certain programs are needed to be put in place to limit the symptoms.

August Newsletter

Those of us hanging out in the lower sphere are heading deeply into winter as our friends away up north laugh  while the sun  is giving them a blast.   Its quite OK people, your turn will come again.  Mind you I read on tele of many experiencing all sorts of utter chaos be it flooding or  other acts of God.

We are honored  that we are living in a time when more is being learned about Superficial Siderosis  than  during the whole past 104 years since the Chicago Neurological Society first brought it to attention of the world. Possibly we are also living in the time that  the most known number of sufferers   exist at any one time on the planet as well.  Without question   there is more interest from the medical world than ever before and one wonders what else will be learned and passed on during the next decade.  Remember a sufferer can help enormously  with passed on accurate description  of the symptoms.

This doesn’t mean we should sit on our hands and count the number of stars at night, but rather we should never turn down an opportunity to educate anybody prepared to listen to us.

Welcome

Yes again, as if we needed it.  This time its hello and welcome to Leonie  in  Adelaide. Leonie was diagnosed with SS just a year ago but is having extreme trouble to get some medical person  to take an interest in her as by all accounts she  has an unbelievable  ailment. Leoni, you are not a lone ranger on this sad  and un-necessary position.  At least someone had the sense to order an MRI when the hearing in her right ear  took a sudden dive resulting in a accurate diagnosis.

When Leonie did get to seeing a neurologist they then went into Google  to see what the hang the radiologist was talking about while Leonie sat and studied fly marks on the wall.

As I was telling her she has the honor of being the 8th Australian SS diagnosed person we know about and number two female. What an honor !!
Oscillopsia

Yes, another of those real medical names of side effects related things.  I see my Oxford dictionary  says that oscillate may mean fluctuate, vibrate, waver, see-saw, swing, sway, vacillate, equivocate, shilly-shally, hum and haw.   Get the picture !!  Yes,  just another description for how our eyes may retaliate  when that thing inside the head called a vestibular is not doing the job it was designed to do.

Don

Give a thought for poor Don of Missouri who is in Nursing Facility and some silly staff member poured Don’s hot coffee over him and he needed a skin graft in his groin area.   Don’s food  is being pureed nowadays.   During the daytime Don sleeps much in his recliner.  His wife Ginger really struggles to hear him as he mumbles considerably and his voice is very low.   Don’s dementia gets worse by the day.

Thank goodness Don has an excellent family who regularly visit him including darling grand children.

James

James  of Carolina is getting his Ferriprox from up in Canada. Wife Linda says you need a doctor to write out a script.  James can’t get it via insurance so they have to pay and this way its much more reasonable.

Jeff
Jeff of Virginia has applied five times to his insurer  for Ferriprox and unfortunately has been turned down each time  has asked me to prepare a document on the drug and more especially the success it has had.  Good luck Jeff for next week’s re-try.

Captain Bob

Captain Bob has just been to a Mayo Clinic and in 6 month’s time is getting a comprehensive check over. Meantime Captain Bob plods along as best he can.

Carolyn of London

Great to hear from Carolyn.   She has been experiencing  failure of the legs and pain so was attending a physio but she was certain it wasn’t helping, rather adding to to troubles.   I hope my ‘essay’ was of help Carolyn.   Stick to watching tele and seeing what Queen Elizabeth is up to in her Diamond Jubilee celebrations.

Michael of Ireland

Michael is currently  in Bergen, Norway. I can only assume he is representing the Irish Hearing Association at a Conference. You poor thing you !!

“Hanging on by my toenails”

Gosh, this email heading caught my eyes.  It was from Eva in Tennessee  and reports how she has just entered her 4th month of gulping Ferriprox with no  differences yet obvious.  Eva’s husband George works night shift  and currently Eva is not coping by herself all that well. Eva, my dear, we are thinking of you and yes SS has the ability to  make the brain insecure so we hope you get yourself back on track ASAP.

Aussie Dave

Dave of Australia is one to mention seizures and aura and since the last newsletter Dave started getting them at an alarming  120 second intervals.   Thankfully his daughter Jennie whisked him off to the doctors flat stick who injected him straight away and put him on medication which helps although makes it him very groggy.  Dave is thrilled to bits that in 14 days he has no repeat attacks.

Dave comments “The one thing for sure is that the more symptoms that I encounter, the more genuine empathy that I have for other fellow sufferers. ”

Sadly for him, Jennie shortly takes up an appointment in New Delhi  which will last for 3 years so he’ll need to set-up another support link for future hiccups.

We wish you well Dave as you seek a replacement for your dear darling daughter.

Aura

Of late the term ‘aura’ has been thrown around considerably by members.   It is certainly ‘very SS’ as it is in conjunction with migraines or seizures.  This is something I’ve been very aware of  since I first getting migraines 53 years ago now.   My parents must have paid out thousands of hard earned money trying to help me. They got the darkest possible sun glasses ( yes- adult size )  and had me to the doctor so often  I reckon mom and dad  owned his consultation rooms !   Plus in those days the doc would go home visits  and he seemed to be forever at our place.

So as to be certain of meanings I went into Wikipedia for their description of the word. It says:

“An aura is a perceptual disturbance experienced by some, but not all, migraine sufferers before a migraine and sometimes during a migraine.   It often manifests as the perception of a strange light, an unpleasant smell or confusing thoughts or experiences. Some people have silent migraines which doesn’t actually include the migraine or a seizure.” I’ve also had them in the past.

The beauty of auras is it allows the sufferer time to not injure themselves, or others.   The time frame may be just a few seconds and  up to an hour.   If it lasts an hour it has the ability to leave the person very confused and disorientated. Most people who have auras have the exact same type each time. I can drink to that !

Auras can also be confused with the sudden onset of panic or anxiety  creating difficulty in correct diagnosis.

An aura sensation can include some or a combination  of the following :

Visual changes
•  Bright lights and blobs
•  Zigzag lines
•  Distortions in the size or shape of objects
•  Vibrating visual field
•  Scintillating scotoma
◦  Shimmering, pulsating patches, often curved
◦  Tunnel vision
•  Scotoma
◦  Blind or dark spots in the field of vision
◦  Curtain-like effect over one eye
◦  Slowly spreading spots
•  Kaleidoscope effects on visual field
•  Total temporary monocular (in one eye) blindness (in retinal migraine)[2]
•  Heightened sensitivity to light

Auditory changes
•  Hearing voices or sounds that do not exist: true auditory hallucinations
•  Modification of voices or sounds in the environment: buzzing, tremolo, amplitude modulation or other modulations
•  Heightened sensitivity to hearing
•  Someone speaking at a level and normal tone sounds like they are shouting loudly

Other sensations
•  Strange smells (Phantosmia) or tastes (Gustatory hallucinations), or where food and drinks taste different than usual
•  Heightened sensitivity to smell
•  Feelings of déjà vu or confusion
•  Feelings of numbness or tingling on one side of the face or body
•  Feeling separated from one’s body
•  Feeling as if the limbs are moving independently from the body
•  Feeling as if one or multiple limbs are growing
•  Feeling as if the mouth is too small for the teeth inside
•  Feeling as if one has to eat or go to the bathroom
•  Feeling as if one is going to vomit
•  Feeling as if you are getting warmer or overheating
•  Sudden Perspiration
•  Anxiety or fear
•  Weakness, unsteadiness
•  Saliva collecting in the mouth
•  Being unable to understand or comprehend spoken words during and after the aura
•  Being unable to speak properly, such as slurred speech or gibberish, despite the brain grasping what the person is trying to verbalize (aphasia)
•  Temporary amnesia, such as forgetting how to do tasks you have been doing for years.

I hope this information is of interest to those of you who do experience auras with their migraines.    My migraines of earlier pre-SS years were extremely draining especially for a 7 year old child.  Oddly enough they first developed when my oldest sister and her husband won the rights to establish a pharmacy is a hydro township the government set up about 70 miles inland from my home town.  In those days it was a very dry uninteresting area and the migraines would usually start up in the auto while going up the river valley to visit them.   It wasn’t long before I knew I had to force myself to vomit and have a bare minimum of 3 hours sleep in a very dark quiet room.  Sometimes this meant having a towel placed over my eyes to guarantee darkness.

Later on if they occurred while I was carrying out employment such as a milk vendor  with a starting time of 1.30 am I found I simply had to carry out my duties and  boxed on as best I could.  Someone seeing me must have wondered what this half-wit was doing wearing sunnies at 3 o’clock in the morning !!    Thankfully the SS migraines are  ‘just’ acceptable  and 99/100  I carry on at whatever I’m doing but as I’ve said in the past New Zealand Manuka Honey with a minimum of Active 5 Plus  plus two strong pain killers will eliminate the migraine quickly.   Actually I had one earlier this week and it was 16 minutes after taking the Honey and Panadol that I was Ok again.   Just a bit  drained.   As I’ve previously said the maoris,  our indigenous population. were well aware of the medicinal values of Manuka as far back as early 1800’s.  In early European days the sailors found out that Manuka was an excellent replacement for making cups of tea hence it earned the name ‘tree tree’.  One has to be extraordinarily careful that the honey is in fact Active Plus. A Great Britain avairy was taken before the courts for incorrectly claiming their’s was the fancy article.

If you get bad auras I really feel for you.

This is so close to the word aurora which living so far south we see from time to time, and I’m sure some of you see the ‘northern aurora’ as well.    I remember as a kid being dragged outside to gaze at the sky.   If we were at our holiday house I might be dragged out of bed even.   Unusually  lights, often  green in color,  would light up the whole heavens but to add  real confusion to a kid they were most unusually shaped.  It  was very hard to imagine how come the sun never set at night and that it could do such amazing phenomena. Just another of life’s doings.

I have recommended Lyrica for the SS pain several times and still think it’s a miracle.  My legs and back start to let me know when it’s wearing off.  Standing to cook and keep house is a constant pain, but less so with the Lyrica.  It is expensive and causes weight gain, but I guess that’s to be expected.  Seems like everything has a down side!

I bought a stool through a catalog — they have it online too — called Golden Violin that has the seat slanted so you aren’t really sitting, but leaning on it.  It really works for some of the cooking and is great for ironing.  The catalogue contains a lot of things that look like they would help with life.

Martha of Virginia:  I was on Ferriprox for 3 months, but had to stop temporarily because I developed bronchitis, a sore throat, sinus infection, and laryngitis.  Tho my situation has improved, unfortunately the laryngitis and a minor cough have continued so I’m not yet back on Ferriprox.   It now turns out that my laryngitis  and cough may be related to a new blood pressure medication, so that’s been changed.  And, also, of all things, I may have developed kennel cough at the same time.  Yep, humans CAN get it.   Seems that around the time I got sick, I had a cat at the vet that was exposed to a dog with kennel cough.  When the cat was brought home, he began showing signs of kennel cough and infected the other cats at home, and soon I had 3 cats on oxygen at the vet’s office.  When it rains, it pours!  I hope to go back on Ferriprox when I’m “cured” of my ordinary problems.  Dr. Levy has suggested I cut back to 1,000mg of Ferriprox per day because of my exhaustion.

Mike of New Jersey:  I purchase my Ferriprox from Canadadrugs, but it’s shipped from the Netherlands.  I pay $360 per 100 tablets.  My total monthly cost is $432.  I take four 500mg tablets per day.

Annie of Ohio:   I am not taking Ferriprox right now, but that is something I will be discussing with Dr. Levy when I see him July 6.  Currently, I am taking Vitamins C, E, and D plus calcium.

If anyone out there has a remedy for loud tinnitus, I’m all ears (no pun intended).

I want to make it known to all of the SSers to beware of taking kelp — after a visit to the ER last month, with my husband and daughter thinking I had a slight stroke. Well, they treated me for anxiety in the ER and sent me home nearly 4 hours later, making me feel pretty stupid for going there.  My husband spoke with my family doctor the next day, and he decided to run a blood test and a 24-hour urine test for a heavy metals screening (which was sent to Mayo Clinic) to check for mercury in my system.  The results came back that I had an extremely high amount of arsenic in my system.  The acceptable amount is 0-35, and my number was a whopping 419!  No wonder I felt so bad, so dizzy and stuttering.  Well, needless to say, I am not taking the kelp supplement anymore, as my husband went on-line and found out that the University of CA did a study of 9 different kelp supplements, and 8 of them came back with a high amount of arsenic in them.  It has now been 5 weeks since I have had that poison in my body, and I am feeling better and am hardly stuttering at all.

I have seen my neurologists again since then, and they didn’t seem alarmed at all about the arsenic, just puzzled.  My husband and I just don’t know what to make of that neurological group.  I am a puzzle to them, and we don’t feel they’re interested in learning how to help me.  Like the hospital, they, too, want to throw me on this med and that med, and write down that I was seen for anxiety.  I am soooooo glad to be seeing Dr Levy next week.

Thomas of Georgia:  I have multiple medical problems, in addition to SS, and take, on average, some 30 or more pills per day.

As for Ferriprox, my neurologist doesn’t like the side effects that Ferriprox can cause.   He is watching me for more bleeding because I am showing more hemosiderin deposits on the spine.  I see my neurologist on the 27th for more information.

Roy of Massachusetts:  I am not taking Ferriprox. This can not cure the disease, and I feel that, at this time, I would not want to stay in the body I have now for any extended period of time.

Since I recently flunked a swallow test, I was told that I needed to thicken my liquids.  I guess I would like to know if this has happened to anyone else.   I aspirate when I swallow liquid, but I am doing better now that  my liquids are being thickened.

Jeff of Virginia:  I am not taking Ferriprox.  My insurance would not approve it.  It went through five appeals.

Has anyone purchased Ferriprox from Canadadrugs.com?  I’m thinking of giving that a try, but it is kind of scary because I am not sure if it is real or not.

I have been having some severe pain in my head and face.  I was prescribed Gabapentin.  It took care of the pain, but I had to quit because it was taking all my energy.  I had a really hard time getting off it, and I’m hoping to start taking Lyrica soon.  That is currently in the appeals process with my insurance.  It seems my insurance wants to fight everything because there is no evidence of anything helping SS.

Nick of Washington State:  Thanks for setting up the US siderosis email.   I tried everything to get my insurance to pay for Ferriprox, but to no avail.  In desperation, I looked online and found it at CanadaDrug for $350.00 per 100 tablets.  I have been ordering it through Canadadrug for the last 3 months.  They are very efficient and always inform me about the shipments.  I highly recommend them (note: they ship Ferriprox out of the UK, so it takes about 10 days).    My dosage is 4 tablets or 2000 mg per day / five days a week.

I have been cutting back on heme (red meat), fortified iron foods, and vitamin C during the week, and stocking up on red meat during the weekend.  I don’t know if it makes sense.

My blood test is on Mondays, and my white blood count started at 7, but is now between 4.4 and 5.5 K/uL.  (The standard range minimum is 4.)

I have had no major problem taking the Ferriprox and now take it with yogurt and occasionally with meals.  I have read that taking it without meals increases the peak concentration; but again I don’t know if it makes sense.  I am actually looking forward to the MRI.  Mine will be at the end of September (I only started in April), and hopefully I’ll see less hemosiderin.

Brad of Indiana:  I had been using the Rush Institute, the hospital that diagnosed my SS.  Unfortunately, they seem to be more worried about money and notoriety than being helpful.  They aren’t willing to work with siderosis doctors.  They had put me on Busiprone and Amantadine (antidepressants) for my dizziness/ataxia, but the drugs really didn’t work. When I advised them that I no longer wanted to take the drugs because they weren’t working (I slept nearly nonstop and when I got up I felt worse), they were defensive.  So I didn’t want to continue with them, and they just sent me off to find  another doctor.

I get my Ferriprox direct from the Missouri pharmacy; they FedEx it every month.  It costs $51 per month.  I’ve been on the same dosage since I started, 2 pills each morning and night, 500mg each pill.

Per Dr. Levy, I tried Provigel, which ended up helping to an extent but also kept me up half the night, and I couldn’t sleep normally.  So I no longer take anything but Ferriprox.

Rose:  I have a radiological finding of SS, but not a d/x of SS from an s/x standpoint.  I need to have further imaging done, but even then I may be in limbo insofar as the doctors stating that I am actively suffering from the effects of SS.  I have been in contact with Dr. Levy who was not certain of the MRI finding, but his colleague believed the MRI showed some SS.  It is a long story why I am in diagnostic limbo.  But, I understand from Dave that there are others like me.

Pam of Michigan:   I am not taking Ferriprox because my doctor at the University of Michigan is not comfortable due to not much being known about the drug, plus the every 7-10 day blood draw, and also his conversation with Dr. Kumar at Mayo Clinic.  So I do not take any drugs for my SS

Eileen of Canada:   I am not portico[atomg in the drug trial.  I live in Canada.

James of North Carolina:  I get my Ferriprox from Canada for $350.00 for 100 tablets.  I take 2000 mg a day.  But I have had an infection and have only taken it 3 days so far.  The address for the pharmacy is canadadrugs.com.  I hope this helps someone.

Going into oblivion

This is to be the last regular monthly newsletter for a number of reasons which I won’t go into.    The number of people who show appreciation to boost my interests and  who even maintain contact  is getting very limited  and I figure my own health and sanity is  much too important  than spending hours researching and writing.  Bonnie and Martha are finding out how hard going this regular  newsletter system is.   One wonders how many SS members have  in fact departed this world, as in some cases I haven’t heard from them in half a decade.   I’ll maintain the group set-up though and  produce a newsletter from time to time.   Even this month I’ve had to create  reasonably lengthy  explanations for  a few members unsure of what is happening to them plus to pass on to insurance  companies, doctors, etc.  This is extremely  important to continue doing for the mental approach and well-being of fellow members.  There is so much non understanding of SS in the membership  but as time progresses I hope you all obtain an excellent understanding.

It seems so mean to do this after all the trouble that Bonnie and Martha have gone to to provide an easy channel for you North Americans to pass on information but I’m practicing what I preach and being very selfish.   So in the future it may be bi-monthly or even tri-monthly. I’ll see how I go.

Currently one task for me is to alter my little bedroom as I’m going to have to sleep sitting up in an electrically operated recliner chair. Our best brand is called ‘Lazy-Boy.’ They do go down to almost flat so it will be trial and error to get the right acceptable angle.

And  a giggle from the neighbour of a new member.  It looks very american to me.

Some true wisdom.
Subject: With Age Comes Wisdom!!

A guy is 72 years old and loves to fish.

He was sitting in his boat the other day when he heard a voice say,     ‘Pick me up.’

He looked around and couldn’t see anyone.

He thought he was dreaming when he heard the voice say again, ‘Pick me up.’

He looked in the water and there, floating on the top, was a frog.

The man said, ‘Are you talking to me?’

The frog said, ‘Yes, I’m talking to you.’    Pick me up, then kiss me;  and I’ll turn into the most beautiful woman you have ever seen.  I’ll make sure that all your friends are envious and jealous, because   I will be your bride!’

The man looked at the frog for a short time, reached over, picked it up carefully and placed it in his shirt pocket.

The frog said, ‘What, are you nuts?  Didn’t you hear what I said?’ I said, ‘Kiss me, and I will be your beautiful bride.’

He opened his pocket, looked at the frog and said,   ‘Nah.  At my age, I’d rather have a talking frog.’

With age comes wisdom.   
 
                                                              

Bye
Dave

 

March 2012 Newsletter

Gosh, its the second of February and I’ve just headed up the next newsletter on my computer saying March. Man, is that ever soooooo scary. Christmas was only yesterday !!  Next thing we’ll be in the middle of winter and you fellas up north will be laughing at us  ‘down under’    Some of you people sure popped out of the woodwork after the February newsletter went out. Fantastic to hear from you all especially those who rarely make contact.

I guess it is honesty time and I have not be fully up- front when people ask me how I am.   The truth, here and now, is I have never been so bad as what I am now.     I’m really fighting going into the fancy power chair  inside the house which was made for me  as Trish’s power chair alone is destroying our fourth laying of nice new carpet and already she has worked right through it again in some places. My thoughts are that a second chair, especially at the extra weight it is, would shred our carpeting to bits.

Even outside I’m very rarely using it, but instead fumbling down the 100 yards to the letter box on my walker   in the hope that it is exercise and eating which is causing my stomach to outdo any pregnant woman.   I know it isn’t, but I have yet to find an intelligent medical person to back me up and find out what it is.

As to be expected with such neurological  drama the head is showing the most  complications in my life.   The whole left side of my face is now numb but also the lips and tongue run in numb mode.   I have numerous times  over the past 12 months gone to my dentist with tooth pain which is very unusual for someone with the rare SS side effect of being unable to feel pain in their teeth.    Just this week in bed while lying on my side I’ve realised that its the jaws are actually responsible for the pain.

Tinnitus  ears squealing  has never been so bad,  nystagmus eye wobbles are permanent full-time things  and when I get sinnusitis which for me is a blocked solid nose, painful eye brows and eye sockets, plus a small triangular section either side of the nose on the cheeks –  the nystagmus eye wobbling extends itself to the whole face.

Unfortunately SS myelopathy not only worsens daily in my legs, but is now obviously paralysing my arms also.    I can only hope it takes equally as long in the arms as it did the legs, because once it is well established in the arms also, its ‘goodnight  nurse.’

I am most appreciative that this past 2 or 3 weeks lower back pain has gone to the Mediterranean on a cruise, but bowels and bladder have become even more unreliable.   The penis, my own special pain relief valve, is operating at its very best.   It has much to take into consideration after all !!

As well as my penis screaming blue murder, the eyes and ears keep it in very good company.   Sadly the Cochlear Implant is close to useless but in fairness it ain’t it, its the brain that can’t interpret the incoming signals.   The signals are loud enough, just undecipherable.  Leonard, my CI audiologist and I  for years have known that it is struggling to compete against the sinusitis  symphony orchestra playing full strength in my nut.

Despite wearing my ming blue glasses  this past 3 weeks I’ve had several migraines.    They have mostly been hitting in the first hour after rising, something some medically-educated person could possibly advice me why.

‘Parkinsons hand wobbles’  are back again.

My complaints of birds flying into my side vision then out again, has progressed to being human sizes doing it.   Needless to say, this alone is very upsetting.

So friends, if you suddenly don’t get any newsletters from me, I hope you can understand why.    There will become a time I say “stuff the whole stupid world.”   Two weeks ago I went to my Care Giver doctor to get another 3 month’s supply of medication and I told him I accepted I was firmly into the final chapter of my SS life.   I never heard his reply as usual, but thankfully next time I opened my gob, I  actually did say the right thing ” I’m hoping I can spin the chapter out into a long one”,  Trish told me later.

Now, with my own experience I can 100% appreciate what has gone on with many of our dear departed friends.   I just hope I never emulate Bill in Memphis and paint our white cat with several coloured high-lighters, nor go out into the public with no clothes on. I can’t afford to upset pussy, nor the population !

I’m sorry to those who asked me how I was and I didn’t tell you the truth, but I think its time to come clean and also to pre-warn all my friends what could happen with this curse called SS of the CNS.

My best advice to everyone is to not turn down any experiences in life while you can still do them. Go scuba diving, climb Mt. Everest, write a book, but don’t withhold now and be sorry later. Listen to me guys.

Q & A with Dr Levy

(1) physically, what causes the cramping ss-ers experience in their legs, hands, fingers, toes, bodies?  what neves are involved?  are there exercises that can be done to minimize the cramping?  if so, how/why do they work?  does heat help relieve cramps and if so how?

A.1. Cramping is due to poor communication between the spinal cord and the brain. The spinal cord’s job is to contract muscles and the brain’s job to control the spinal cord. So when the communication breaks down, the spinal cord is less inhibited by the brain and sends more signals to the muscles to contract.

When you cut the head off a chicken, it runs for a while. That’s because the spinal cord is controlling the muscles without input from the brain. Our spinal cords are less controlling than a chicken’s, but it’s the same idea.

Rehabilitation establishes new circuits between the brain and spinal cord and that helps to re-establish control by the brain.

(2) physically, what causes incontinence?  we’re told it’s myelopathy, but exactly what happens to the spinal nerves causing them to react this way?  and are there any ways to strengthen these muscles? are there any drugs that work well without a lot of side effects?

A. 2. The sphincter muscles that hold the urine in the bladder are topically stimulated by the spinal cord. If the spinal cord fails to keep those muscles constantly contracted, urine flows out. These muscles are not under voluntary control except the very last one, so exercises are generally not as helpful.

The other major cause of incontinence is bladder spasms similar to other muscle cramps. The medications for incontinence are designed to relax bladder muscles.

(3) neuropathy.  specifically, what is happening?  how does the hemisiderin cause the nerves to malfunction?  is the lining of the nerve eaten away or destroyed leaving the nerve exposed?  is this exposure what’s causing the pain?  if so, how?

A. 3. Neuropathy in SS is caused by destruction of nerves as they exit the spinal cord. It’s the same disease process. Hemosiderin coating the nerve, the supporting cells doing their best to protect the nerves, the supporting cells become overwhelmed and unable to keep up with the toxic iron, the supporting cells die, the neurons can’t function without their supportive cells and eventually die too.

(4) memory retention.  what can be done to improve memory?  eg., like playing games.  but exactly how does this work?

A. 4. Improvement in memory can only be attained with practice. There are all kinds of memory games out there that can be helpful.

(5) why does our gait widen?  physically, what’s causing it?  are there exercises that cazn be done to return the gait to its original stance?

A.5. Gait is a complicated process. It takes humans a year to figure it out because it involves many neurological systems. Disruptions in any of them can lead to gait problems: neuropathy, cerebellar involvement, sensory loss, weakness, spasms…

(6) what sort of drugs are not supposed to be taken while on ferriprox?  can a patient take vitorza or byetta (sp?).

A.6. The only things that cannot be taken with Ferriprox are things that bind Ferriprox in the gut: iron pills and vitamin C, and any vitamin pill that contains either.

Peace to you all this March
Dave

Email dave!

Dear All,

I have switched off the comment function, as most of the comments really only wanted to tell Dave what’s happening with them. I would suggest you email Dave directly (see the little tab above) and he will add you to his fabulous mailing list.

Dirk

December 2011 update

Yes, another December in the life of an SS’er. For those of you who celebrate Christmas, you must surely have an absolutely fantastic one with family and friends.

Remember – you wouldn’t be dead for quids.

Ghastly Memories

Today is the 30th November, my 60th birthday of  life on this planet.
I don’t usually get all concerned about birthdays as they are really
nothing more than  markings on a calendar,  but I guess it really is a
milestone event.    To now make my 70th would certainly take a large
carton of  special miracles from above, but I can live with that. Or
die with that !!

The approach to the big day was real dog tucker.   Yesterday, despite
sitting on the loo something like 5 or 6 times I couldn’t oblige.
Needless to say I’ve had bad stomach pains.    Also aches in every
corner of the nut and my teeth on the right hand side were screaming
obscenities.   My Cochlear Implant was playing silly beggars and I
often threw it away in disgust.   Negotiating down our passage it would
deliver  loud bass drums beats ( no, more like a huge metal drum being
beat ! ) every couple of seconds.    All this is beside the UTI I’m
currently experiencing.  To feel the leg pain is even better  than
winning Lotto.  It may be stone cold, red hot, very little, or so full
the plastic is all ‘pingy.’    I’ve noticed of late that as well as my
penis being the body’s  pain major outlet,   sinisitus   on the left
hand side of my nose is  trying to take its place.    It has the
nystagmus pulsations to go with it.   I’ve yet to find a medical person
who believes me.  I think they all need to go back to Med School, or at
very least properly study detailed neurological text books.

You know because what we have is one of the most complicated
neurological things to get, I’m forever working out things.   Why did
viral encephalitis hit me on the 29th November   and the same day of
this year real serious decline arrived ??????? I had not thought about
it until  Trish mentioned well after all the things became so obvious
during the daytime.  Doing this job is actually the worst thing out for
me.  People email me and say ” I have so and so ”   then pickle my left
one within 48 hours I have it also.    I don’t wish it on myself I just
give it thought.

Remember though  ” I wouldn’t be dead for quids.’  HA HA.

Members out there

Actually half way into November and I’ve had very little incoming email
traffic from members. I can only assume you are all fine, running fast
ten mile races and swimming 2 miles every day.

Tommi in England’s tumour on his brain has been increasing of size
lately, first arousal from it in 35 years.   The experts have been
watching it closely for 5 years now, but say the time to operate is up.
The neurosurgeon is a bit apprehensive though.   He finally made
contact with Dr Levy for advice.    Sadly the British  hospital system
is as pathetically slow as it is here in New Zealand, but  all the very
speedy best Tommi.   Give a thought for Tommie’s predicament folks.

Annie in the States is experiencing a built-up in side effects and
obvious frustration to go with it.   She is another to find the medical
so-called experts are very slow off the mark to help.   You have my
deepest sympathy don’t you Annie, as no-one knows more than me about
trained medical staff falling by the wayside, than me.  They may start
off all keen and intelligent-like, but once they realise   they are up
against such a  complicated disease they shoot down the ‘easy road ‘
and hide in behind the first high hedge they come across.  The story of
our SS lives.    We should write a book or a TV documentary.   Keep
hounding though Annie.   May success be yours.

Marie, mom of Lihanda is South Africa, our pin-up SS girl, says Lihanda
is going super strong with her Cochlear Implant.  Ferriprox appears
also to be fantastic, her  condition is stable with no new side-effects
rising their ugly heads, nor existing ones supposedly getting worse.

Lihanda has her own flat now,  after just recently moving in, adoring
the freedom this gives,  has one more year to go in her studies and is
on top of the world.   Fantastic news Lihanda.

Jane in Hampshire, west of London, England  has been undergoing a 5
year retesting of her SS affects.  They believe SS is mild in her case
( lucky devil ! ), cannot see any sign of current bleeding,   but the
expert Jane is under  is extremely good in her understanding of things
and confirms that Jane is quite OK when not under any pressure. She
recommends Jane takes a slow, very focused and methodical approach  to
any mental activity.    Its really great to hear such positive comments
Jane. This lady was able to describe each and every limited part of her
brain that the iron has reached.  Stick with her Jane.

Martha is trying desperately to reach the top of her own Mount Everest
again.   Using the computer is a real pain, so I rarely hear from
Martha.     You have a huge number of people can fully empathize  with
you Martha.    Santa told me he is going to be especially nice to you
this year, so keeps your wits about you.

Jackie, wife of the late Bob of Colorado sent me a lovely email.  She’s
taking one step at a time as she bounces back from Bob’s passing.
Poor Jackie, now her mother is going into Hospice care and as she says
its like living it all over again. We pray for you Jackie.

Bonnie tells me as she deteriorates in her gait, her several indoors
animals are not stupid and they spend their time running for cover
rather than getting squashed.   And we thought the human race is
intelligent !!

Today is the 2nd of December and Bonnie has just replied that Martha
was the only one to make any contact with her hence I’m sending this
off right  now.   You are obviously all very happy people over there
and have zip to share with fellow members.

Cognitive

I’ve had email conversations with some of you following my inclusion of
the term Cognitive  in the last newsletter.   It  prompted me to
Google the phrase and yes over 2 million references to it. I chose one
– good old  reliable Wikipedia which in the opening paragraph
describes it as ‘ mental processes which include attention,
remembering, producing and understanding language, solving problems and
making decisions.’   It says these processes  can be natural or
artificial, conscious or unconscious.

I for one, this past few weeks is most definitely affected by this side
effect.

I laugh at the Professor Neurologist I finally got under when I had
viral encephalitis ( my trigger )  back in 1991  but was ignored  by
others in his trade.    In front of something like 20 student doctors
while testing me he said I’m going to give you three objects,  we’ll
have a discussion, then I’ll ask you if 5 minutes time if you  can name
the objects.

He said ” a black umbrella, a red shoe and number 10 Downing Street. ”
Five minutes later when he asked me I rattled them off for him.
10/10.   Go to the top of the class but don’t bother taking your books
with you, sort of stuff !

Maybe 18 months to 2 years later I was under him again in front of a
herd of students.  He said ”  I’m going to give you three objects,
we’ll have a discussion, then I’ll ask if you  can name the objects.”
I immediately said back  “a black umbrella, a red shoe and number 10
Downing Street.   ”     The students all went into absolute fits of
laughter.

“There’s absolutely nothing wrong with your memory ” says he.

The same man is now in his late 80’s but was especially bought in last
year to examine me.   I said the magical line to him and he didn’t
believe what he was hearing.

I do fully accept  I have only limited cognition nowadays though.

Certain things I learned as a young motor mechanic  over 40 years ago,
I remember well still – like the firing order of  V8’s,    but
something I was told a few hours ago is quickly lost down the toilet
hole.   SS at its very best !   But then I’m preaching to  fellow
bereaved,  aren’t I.

What we simply must do however is to try and help ourselves as much as
we can.   In my case as an example, I  often don’t write down
measurements I’m taking  but rather force myself to remember them.

An obvious extention to this write-up are the  words  brain’s
plasticity    Don’t go thinking Tupperware  or Glad Wrapped food in the
fridge.    Rather it refers to our ability  to make one brain’s
department compensate for those lost down the tubes forever and a day,
such as our ever failing cerebellum departments.

The brain has hundreds of departments, some which do  little work and
are just sitting open waiting to carry out new tasks. Work them hard
folks, train them to do new things and do it daily for your own
benefit.

As I’ve said many times in the past there are endless things you can do
to  help yourself – Suduko, Scrabble, Cross Words,  reading the
newspaper, watching TV ( but not sleeping !),  emailing me,  it is
never ending people.     Lets all be super positive during 2012.
So, what is your new year’s resolution again ????   Lets make 2012 a
real cracker of a positive SS year.

The Catheter Lady

I’ve just said good-bye to one of our District Nurses who came to
replace my catheter.   Poor lady !   While removing the old one both my
legs shot into the air and I yelled. Should that be screamed !!

She and  a few nurses claim there is no-one else around like me.  Lucky
them !!   I’m still completely certain it is an internal problem
because when the injun import specialist fitted the first one, he
stretched some nerves and one, or more nerves, have sneaked back into
place and are touching the line through.

Just another exiting  thing to live with as we trundle along the SS
highway of life.   I now look really forward ( ! )  to the next
replacement call on the 31st January.  I’m not sure !!

Q & A with Dr Hill

I put a question to Dr Levy but he’s too busy at present, so here goes.
One of the few emails I’ve received from the USA this month said this
” your information on myelopathy is very interesting, but not
encouraging. Could it ever get worse than that ? ”

Well John,   yes it can –  big time.   As myelopathy takes full hold of
your legs you will rely 100% on a wheelchair for mobility.  The times I
most notice my gross inability are  showering, getting in and out of
the motor vehicle, or bed.  Nothing is automatic anymore, I have to
think hard to make the legs move.    Also you can almost fully bet that
both your bowels and bladder will go AWOL with it.

There are mentioned cases in medical SS research sites of the arms also
being affected.  Unfortunately, all these sites are somewhat short on
detailed information for the likes of you and I to absorb and  prepare
ourselves for the very worst.  % on others to do absolutely everything
for us ??????

This past couple of months I have been waking to a really aching right
arm. It started right in the elbow and I put it down to one of several
falls, as I knew I’d hit my elbow on the cement on more than one
occasion.     Right now the muscular pain however is down my lower arm
to the wrist and for weeks / months both hands have fingers which is
hard to explain. Not fully painful, but certainly partially, plus my
ability to get fingers to function correctly is dead shocking.
Picking up things or turning the pages of the morning newspaper or the
bedtime book   are ‘interesting’ to say the least.    Probably the most
obvious time  is when I do to use roll-on under my armpits.    The
right thumb is completely useless and the left is following it
super-fast.   I see the urgent need for spray instead.   The left arm
is better, but not perfect.

As I’ve said before, SS Myelopathy  is actually a very nice version to
get  as it can take months / years  to fully be created in you, whereas
the other three documented forms  take less than 24 hours.   You should
be very intelligent when first signs appear and prepare yourself  and
your environment for what is to come. Access is by far the number one
consideration.     Living on the top story of a four level  apartment
building with no lift  is kinda stupid,  for instance.    You could
parachute down but getting up in kinda hard.

Remember, you have been warned !   Think about it friends.

Just prior to sending this newsletter Dr Levy did reply. His opening
remark is ‘  a very good question.’    He says for the arms to  also be
affected it  means that  hemosiderin depositing is taking place in the
upper parts of the spine.    I know that for many years Dr Levy has
questioned me ” are your experts completely certain that no bleeding is
taking place in you anymore ?”  My past neurologist just scoffed each
time we mentioned it.   In fact you could say in the end he was blessed
well getting annoyed with us for such a suggestion !   YES, typical SS
stuff !   A  patient should be seen and not heard !!

With the good  Dr Levy’s comments, I replied on a purely personal side
asking did he think that the display of arm movement deterioration was
acceptable  following obtaining my SS trigger in 1991, being aware of a
major problem 12 years 0 months, later and final SS diagnosis 16 months
after that, now definite upper myelopathy displayed  7 years, 6 months
after that.

Dr Levy’s reply was ” I think the delay in the involvement in your arms
is reasonable given the anatomy  of the spine and the time it takes to
build up hemosiderin in the upper spinal column over time. ”   In other
words I’m no great circus freak. !

Thank you Drs Levy and Hill !!

Not exactly a joke, but for serious  consideration

Unsolved Mysteries of the Anatomy
Where can a man buy a cap for his knee, or a key  for a lock of his
hair ?
Can his eyes be called an academy because there are pupils there ?
Is the crown of your head where jewels are found aplenty ?
Who travels along the bridge of your nose ?
If you wanted to shingle the roof of your mouth would you use the nails
off your toes ?
Can you sit in the shade of the palm of your hand or beat the drum of
your ear ?
Can the calf of your leg eat the corn off your toe, why not grow corn
on the ear then ?
Can the crook in your elbow be sent off to jail, if so, just what did
he do wrong ?
Just how do I sharpen my shoulder blades ?
I’m confused !!!!!!

Be nice to Santa as he lands on your roof this Christmas Eve
everyone, and please give the chimney a good sweep beforehand.
Lets all of us have a fantastically positive and
productive 2012.

Dave

August Newsletter

Welcome

Yes, for some reason I knew I’d need that heading this month. Its a big
hello to Jennifer 70 miles south-west of Chicago, ( her words to Trish
on the phone.) I now know Jennifer lives in a small farming
village. She has been battling SS side effects for something like 20
years now and is actually quite thrilled to have just been diagnosed
with SS, as it settles her mind tremendously to know that all the drama
for so many years meant she wasn’t going nutty at all. What has thrown
the so-called experts is that Jennifer is one of those rare people to
have 100% perfect hearing. Although she hasn’t exactly said to be
placed on my US map, Jennifer’s home town must be somewhere in
Illinois I figure.

While inserting Jennifer into my files I noticed she is in the most
favorite age year. That of 48, although the other 6 people had their
48th birthday last year. Many researchers in their websites say that SS
is predominantly a 50’s and 60’s age group disease however ‘our’ 48
year olds help to defy that. I accept it is more to do with the age at
diagnosis, or being aware of SS side effects attacking; but the large
number of people of that particular age sure stands out.

After Jennifer I had another 3, YES THREE SS survivors contact me
over a 48 hour period. Its another SS month folks.

We do have some information on 83 year old Nathan in Florida where he attended the local Mayo clinic and was diagnosed 5 years ago. His source of bleeding was never located. During that 5 years Nathan’s SS progression has been quite slow like so many ( most) of us.

Nathan’s step daughter Susannah is maintaining contact with me,
although he does have a computer. Nathan joins Jennifer in the 80’s
age group listing so you are no longer a lone ranger Jennifer.

Probably the closet fellow SS’er is Captain Bob further
down on the Florida Peninsula.

Next to say hi to is Judy of Colorado. She is 67 and only just
diagnosed after unseen time of fighting ? Obviously,
like us all, to know what is attacking the body is a huge relief, even
if it is one very unwantable disease. Amazingly Judy is another of
those rare members who retains her hearing. To date she is still
able to walk on her pegs OK. It is thought, but not proven, that the
neck surgery Judy had 15 years ago was her trigger. Timing sounds
about spot on Judy. Judy has just been along with two of her
children to see Dr Levy which was very well received by all the
family. Her daughter Michelle is my contact family member. As it
turns out according to these people’ timing of replies with particulars
Judy has the distinction of being member number 80 on my list.

Sorry to have to welcome you into the SS-contact world Jennifer, Judy
and Nathan, but I do hope you get something out of being in our
exclusive group.

Yip, another month come and gone in the SS world people and as per
usual the reports are very varied. Those of us ‘downunder’ are being
haunted by plenty of cold weather, so I expect those of you in the
other half are into glorious sunshine. Don’t get burnt guys ! We
had several hours of snowfall at our place virtually at sea-level.

Because my short-term memory has declined considerably, I’m writing
notes for myself all the time. So much so, I often confuse myself
through writing down insufficient information. Does this ring a bell
anyone ?

Map USA

Because I’ve unfolded the US map a million times over the past half a
dozen years, the folds started ripping badly, however I found an old
one in our office which is now official SS property. Judy is
the first member to live on this version. The rest in due course.

Heather

The Man Who Mistook His Wife For A Hat

Several emailed to say they were going to pick up on the generosity of
Howard at the other extremity to Heather in the UK and get a computer
copy of this book. Even medical doctors who get this newsletter were
starters to read it. You will be all well educated after reading it.

Phiona’s Bowel Recipe

Phiona, my Continence Nurse, is a great believer in taking natural
things wherever possible and she has me on the following recipe to
encourage my bowel to act. After 4 days of spooning it in, I’m
definitely a happier chappy. The recipe includes kiwi fruit which
obviously is readily available in this country and is reknown as being
good tucker for bowl movement. Prunes and bran have for decades
been taken to make this part of the anatomy play ball. I can fully
recommend this Phiona brew.

Poo Goo Recipe

Recipe for one person for 1 week

Prunes -18 plus their juice

Kiwifruit- 4 skins and all

Bran – 4 tablespoons

Place in a blender and mix well together.

If too thick add more prune juice to thin it down.

You are best to have a heaped spoonful a.m. and p.m.

Wrist Bands

I never did hear how a pair of these helped, or otherwise, with SS
balance. The way I have gone of late I’d need to wear a factory’s
entire day production I reckon. Just today my ability to stand or
shuffle was the worst it has ever been. I don’t know if its
coincidence or not, but my tinnitus today has also been the absolute
worst ever. I now need to carefully watch both to see if there is a
connection. (Very unlikely. Dirk)

Activities

Two further suggestions to get your brain into overload mode are Bingo
and Scrabble. WORK, WORK, WORK that is the SS motto.

Intolerance to Temperatures

The SS brain is sooooooo mixed up that even Disneyland could struggle
to make an amazing story on it. Only thing few, if any, would believe
the truth of it all.

Lately I’ve had extreme troubles with the heat of my regular cups of
daily coffee ( only decaf to keep my Continence Nurse happy ! )
and we are fair pouring through milk to tone it down for me. The
other things I’ve noticed is the hot water tap offerings. I’ve turned
down the hot water elements, but sometimes, not always, the water burns
my hand yet Trish says ” it ain’t that hot.”

I guess in tandem with this is my body temperatures. Since SS
myelopthy has got its dreaded way in me, I can be feeling freezing
cold one minute, or sometimes 5 minutes later roasting hot, even in
winter.

This proves that absolutely nothing, and I mean absolutely nothing,
connected to the body is exempt from Mister SS’s dragon-like paws.

CI Operation

On the 25th July Lihanda in South Africa received her operation to
install the gear inside her nut. Look forward to hook up and
sublimeness, Lihanda. I was asked the other day how many members now
have CI’s. According to me the number is 14 living souls.

This off my CI list : Greg ( died ), Steve ( died ), Jeff C (2),
Linda, Gordy ( 2), Dave, Michael, Ila, Ross, Carolyn, Malcolm,
Melody, Paul, Michael, Craig, Lihanda.

Please correct me if I’m wrong, I’ve had a couple of Cochlear Implant
Clinics ask me also. This could have extreme relevance to future
operations or investigations, so kindly give your fellow members a lift
up. Do it now !

New Website and Gossip Avenue for SS’ers

Joe in Georgia has done very well in constructing a nice new
chatter box website for members. Check it out on
www.superficialsiderosis.com Well done Joe.

Raymond

Speaking of getting hearing assistance, ‘maple leaf’ Raymond is going
in this month to a audiology specialist. To date there has been
suggestions of bone anchored hearing aids. All the best Ray in getting
help to hear again, whatever system is finally used.

Superficial Siderosis Myelopathy

Dr Levy has advised that it would be quite fair to call the myelopathy
which is ours and ours alone – Superficial Siderosis Myelopathy. As
we all know our problems are generally quite abnormal and this
certainly applies to ‘normal’ myelopathy which in 99/100 it affects
people within a 24 hour period. I know in the case of a friend of
mine he was swimming in the sea when it struck him with no pre-warning.
A very scared young man had to swim to the beach and crawl back over
the sand to his towel.

I guess few of us would experience fast or even moderately quick
attacking. In my own case it has been slowly working away for nearly a
year with a huge number of quite varied symptoms. The very latest
alteration has been temperature of the legs. I’m noticing the backs
of my legs and feet are quite cold. A shower has only short affect.

Trish has one of the three acknowledged ‘normal’ myelopathies –
mylitis, as in poliomyelitis. A shower for her is worthless, she
requires a nightly hot bath to warm up the legs sufficiently to permit
sleep.

Optic Nerve

As we progress down the SS highway more and more is being learned
about aspects of ‘our illness’. As many of you are very aware the eyes
have much to blame with SS. Here’s a little writeup I did last month,
but didn’t include it is that newsletter.

Also, Martha recently asked Dr. Levy how SS damages/impairs the optic
nerve, how the damage is manifested, and whether there are any articles
on this that she can read. Dr. Levy stated that SS impairs the optic
nerve in the same way it does the other cranial nerves such as those
for hearing and smell. The way it would manifest is as a loss of
visual acuity (how sharp things are) to a loss of visual fields (how
much peripheral vision you have). Dr. Levy says there are no articles
on this issue at all to read.

Also, there’s another VERY significant article available by Sally
Painter, et al. on the relationship of SS and optic nerve damage.  It
relates to my problems, I believe.  We’re allowed to print the abstract
without violating copyright laws, so here it is:

Superficial intracranial siderosis is a degenerative condition
secondary to recurrent occult subarachnoid hemorrhage.  Progressive
sensorineural deafness, cerebellar ataxia, and pyramidal signs are
well-documented clinical manifestations, but optic neuropathy is not a
recognized feature.  We describe 2 patients with clinical and
electrophysiological evidence of optic nerve/chiasm dysfunction and MRI
signal abnormalities consistent with hemosiderin staining of the
anterior visual pathway.  In a third case, neuropathological
examination of the optic chiasm showed demyelination attributed to
hemosiderin deposition.  We suggest that anterior visual pathway damage
may be underrecognized in this condition.

Thank you Martha. It does appear that slowly but surely much more is
being worked out. The two important words in the above final chapter
‘ hemosiderin deposition’ are extremely important. In other words
iron salt deposits are recorded wending their way into every possible
little corner of our CNS and affecting so many bodily functions.
Much more so than was ever previously realized, except by those of us
inflicted. One day the medical world may catch up on us.

For those of you who have commented in the past that we are members of
the forgotten brigade, take heed that we, in fact, are not being
ignored. One day friends all will be revealed ! Stick around.

Visual acuity is certainly alive and well in me as I’m having to chop
and change glasses to read and even see long distance . For all my
life until just recently I’ve had fantastic vision. I was also very
interested to read in the reference to the loss of visual fields (how
much peripheral vision you have). As time marches on, I’m
experienced imaginary movements in my peripheral vision competing
against imaginary smells and tastes. Oh Mister SS, you are such a
weirdo.

2007 Study

For some reason Dr Levy and others website has appeared as the first
three listings on Google the other day so I went into one to check it
out. They collated reports of 270 SS’ers over many decades from
every imaginable country on the globe. The listing of %’s for the
top ten symptoms were very interesting and included:

Hearing 81%
Alaxia 81%
Myelopathy 53%
Urinary complications 14%
Headaches14%
Anosmia ( inability to smell ) 14%
Diploplia ( double vision ) 4%
Bowels 3%
Ageusia ( inability to taste ) 2%
Cranial Nerve Palsies 2%

I guess the fear of listing figures is that they are prone to
alteration and our Support Group certainly has some very different
figures to those shown.

AND FROM OUR US CORRESPONDENT MARTHA

This month we’ve received a good number of notes from North Americans
coast to coast and north to south.

Jeff C. from Virginia thinks the “other Jeff’s” (Jeff G. of Minnesota)
idea for the newsletter – to list all the things we can STILL do – is a
good one. He says he’s still working full time in the same job where
he’s been for twenty-four years.

Jeff C. was diagnosed with SS in 1999 as a result of hearing
difficulty, and did not know how serious the situation was until 2002.
Although his hearing was degrading quickly, that was his only symptom
at the time. He has felt like his “back is against the wall” ever
since the diagnosis, but he continues working to remodel rental housing
“to build some worth” for his family.

Back in ’02, Jeff says he would work up to sixty hours a week at his
regular job and then work on the three houses he owned every second he
could spare. He completed the remodel that year of the home in which
he lived and then sold it. What a mistake that was, trying to live
through a remodel, Jeff says. But then he purchased another remodel
project which he is still working on. This remodeling effort is not
going so well tho. Lots of medical issues are creeping up on him.
Significantly, his balance is starting to get a little off, so he
cannot climb a ladder anymore. All the problems now — from tingling
feet to blurry vision to constantly using the bathroom — are not
nearly as bad as his lowered energy level. Jeff says he has always
been a person on the go, never needing more than six hours of sleep,
going “a hundred miles an hour” all day. Now, however, he can’t get
enough sleep, and, by early afternoon, he is ready for a nap. BUT he
does work eight hours most days and is still hanging onto the rentals
on which he does nearly all of the upkeep.

Jeff says that the last time he tried, a year ago, he could still ride
a bike just fine. He can drive and does not have any problems
traveling. He has two cochlear implants, and is still getting used to
the second, but he can participate in most activities. He admits that
his life was turned upside down by losing his hearing, but he says he
is still fighting everything else!

***********

Another North American SSer has posed the following question for the
group’s response: Is anyone else having a problem with losing feeling
(becoming numb) in their face?

*********
North American SSer, Roy from Massachusetts mentioned to his wife,
Jeanne, when readying for bed recently that he saw flashing lights
(LIKE A DISCO BALL) all around him. Jeanne would like to know if
anyone else has had this happen. She helped Roy into the shower
thinking that the problem might have occurred because of the heat.
The flashing lights did go away after about half an hour. Roy was
checked out by an ophthalmologist who found no evidence of a detatched
retina, and decided that Roy’s problem was probably stress related.

Of late, poor Roy has also said that he hears noises and that voices
are talking to him all the time. Are any others experiencing these
phenomena, Jeanne asks?

As to the things Roy can still DO, Jeanne says that he waters the
garden, walks the dogs, and folds laundry and is still able to get
around pretty well with a cane. Meanwhile … she implores us all to
stay cool these days!

********

Martha from Virginia reports that while she had to stop working full
time, nonetheless she works from home editing doctoral candidates’
dissertations and editing journal articles for professors and graduate
students at a local university. She had intended on working another
four years, but her energy level plummeted and ataxia sidelined her.
She still drives during the day, but has given up evening driving
because her vision is too blurred. She recently had her left eye
checked for glaucoma and was told that while she was “suspicious” for
the disease, the situation had not reached the level of full blown
glaucoma. She continues daily work on her (very small) “crops” of
tomatoes, green peppers, and squash – they’re in containers on the
steps!

Brad and Judy from Indiana are, like nearly all of us, finding the
current heat wave oppressive, and extremely hard on Brad. He
constantly develops headaches when coming into the air conditioned
house from outdoors. As to his abilities, Brad is still able to drive
since his lightheadedness doesn’t occur while he is sitting. And right
now, the lucky fellow is on vacation with his kids, fishing and
boating. He always wears his life vest, Judy says, and has someone
with him … he’s NOT about to give up a nice bass!

And Judy reports that, thanks to a review of Brad’s tests by the
“awesome Dr. Levy” and his radiologists, it seems that Brad’s
previously diagnosed dural tears may not be a long span of tears as was
first thought, but possibly just one tear in one location. Judy says
their neurologist at IU has continued to stay on top of things and is
working closely with Dr. Levy. And Judy reminds us all – “Good
(medical) folks are hard to find, so keep ‘em when ya find ‘em.” How
true! Judy and Brad plan to go to Johns Hopkins to see Dr. Levy and
his “neurointeradiologist” to verify, hopefully, the findings by
performing a dynamic CT myelogram on Brad. If it turns out the
radiologist is right, there is hope the tear can be fixed. Your
prayers would be appreciated, Judy says.

*******

Bob and Jackie of Colorado report that, while everybody else is
sweltering, their weather has been pretty nice. Lucky dogs. Recently
the temperature reached 97, but their humidity was low. The weather
folks there are calling it a “dry heat.” Jackie, who’s originally from
New Jersey, says if it makes folks on the east coast feel any better,
she thinks the humidity “keeps you looking younger.” .

Jackie says that Bob’s condition seems to be getting worse, but as we
all know that can change in an hour. After spending two months at
home, Jackie has to go back to work very soon, and may already have
done so by the time you receive this newsletter. She’s been home
organizing her mother who also lives in Colorado. Jackie says her
mother suffered a series of strokes, but has people coming in weekly to
help her out. Now that Jackie’s going back to work, she has arranged
for hospice care for Bob, hopefully five days a week. She’s concerned
tho that he will sleep more when she returns to work.

Jackie wonders how other spouses deal with SS. She hopes she’s doing
right by Bob, and always wonders if she could do more. She says she
can’t believe for all the falling Bob has done he has not broken an
thing. He only has the use of one arm, however, so hospice is giving
them the use of an electric wheelchair, a godsend, Jackie says.

The nurse said she is going to give Bob a new drug. Jackie can’t
remember what it is, but when she finds out, she’ll try to remember to
write SS folks to see if anyone knows anything about the drug. Jackie
says she’s not “crazy about trying anything new” as they’ve tried so
many drugs for so many years, but everything makes Bob so sleepy which
concerns her.

Jackie asked, again, if families of SS-ers would be willing to
correspond with her to discuss how they’re handling their particular
situations. She’d like to know what more she can do to help her
husband. So if anyone’s available to talk to Jackie, just let a
newsletter person know and we’ll put you in touch with her.

*******
Melody of Arizona reports that what’s on her mind these days is
BALANCE. For years she was up early and walking (hotter than Hades in
her area so that’s the best time to walk). She walked with hiking
poles, but has had to give up walking shoes, at least the good kind she
wore for years, New Balance. She found that sturdy and non-flexible
shoes are very difficult to walk in. She needs a flat bottomed shoe
that’s flexible. Melody made herself throw out some shoes, but every
new kind she bought and couldn’t use, she donated to some cause. That
way, she says, she wouldn’t be “tempted” to wear them and fall. She’s
not at all concerned what her shoes look like, and has found K Swiss
Kona(c) women’s shoes helpful. She says they do stretch out quickly
tho and they’re not cheap either, but she’s willing to pay to be able
to walk better and more safely.

Melody just wrote back to say that she has found some NIKE Womans’ Flex
Trainer shoes with flat bottoms she’s trying out. They’re flexible
shoes and aren’t for long walks or hikes, but they’re helping her walk
better than some of the athletic shoes. They don’t provide a lot of
support, but “they’re closer to the ground!” She feels like she has
better balance with them.

Melody also says that she’s had some excellent PT which she does daily
in the AM, especially working on the quads, to loosen them up and give
her strength walking. The exercises involve marching in place. She
thinks that lifting the legs sort of high is a great stretch which she
does several times a day. She hopes that maybe sharing these sorts of
challenges — shoes that work and exercises that bring relief – will
help folks. She’d be interested in hearing from others about these
things too.

Melody reports having more trouble with her handwriting, too. It’s
becoming a bit shaky, she says. Her printing looks more “normal” than
her cursive. She’s wondering if there are any exercises she might try
that could help her. Does anyone have any suggestions?

****

Pam of Michigan reports that not much is going on up her way. Except,
of course, the heat is killing her lately. She has an October
appointment with her neurologist for a lumbar puncture. She’s not
particularly enthusiastic about having the test performed since her
neurologist told her that even if they find a bleed, it may not be able
to be repaired. He may be right, but it sounds like a consultation
with SS guru Michael Levy might be something to consider.

*****

Eileen of Canada says she’s been thinking about positive things that
she can still do.

How about BINGO, she says! She has loved playing bingo ever since she
can remember and goes weekly with her sister, Kitty. to “connect those
dots.” They have so much fun!

Eileen likes to go to the movies. too. She is restricted in many
things, like no driving, no oven use, and walking is hard so she uses a
cane and is going for a walker soon. She reports being extremely dizzy
24/7. She also reports that while SS is pulling her down
psychologically, she has just started taking medication to counteract
that problem. “I want to be happy,” she says. We want you to be
happy, too!

This just in – another weather report! It has been very hot in
Toronto, too. In Canada they report temperature in celcius, but the
U.S. equivalent would be in the high 90’s. By adding in the humidity,
tho, her temps have been in the 100’s. Eileen has great air
conditioning, so she is staying indoors as much as possible.

Eileen thanks us for the connection with SS people. “I don’t feel so
alone,” she says. And that’s exactly what this newsletter is all
about!

*****

Kerry of Arizona reports she and husband Mike are “going crazy” right
now with so much on their plates – trying to work with her dad’s
worsening dementia in Florida, her sister in Massachusetts, and their
daughter who’s buying a house in Atlanta. On top of that, apparently a
midnight marauding raccoon (does anybody remember that Limelighters’
song?) came when she and Mike were in Iowa and got another turtle. So
they’re trying to redo turtle pens and make them more predator proof.
They also bought flashing red lights that are supposed to deter night
time predators. The problem tho is that they can’t cover the big pen
because it’s an odd size and has a tree in the middle.

And moving right on to the Arizpma weather news — Yes, the heat is
horrible in Arizona. Until a few days ago, Kerry and Mike had not seen
moisture since February. The total so far for the year is only .22
inches. Their norm at this point is 3 inches, Kerry says. Their
rainy season is trying to come on, but is not succeeding very well.
Unlike the east coast, their humidity has been in the single digits, so
everything is too dry. Kerry says that the fires are awful. Sometimes
the smoke settles in the city and comes in the houses. But, lately, it
seems the fires are under control.

Kerry’s not sure what to say about her SS. When she’s in her
jazzercise class, she can do amazing things. Sometimes she just stops
in wonder. But, once the endorphins drop, a lot of that goes away, she
says. Kerry can stand on one foot for a decent period of time, as well
as lean forwards and backwards without falling. But, her feet are
getting so numb that she’s falling more than ever, especially when
working on turtle pens which have her climbing up and over and around
things, and not very gracefully.

She asked Dr. Levy about the status of the one-year Ferriprox study,
and he said the FDA is slow. Apparently, they want him to prove there
are under 200,000 cases in the world, she guesses because his study
sample is low (her assumption).

As for pets, Jerry and Mike are “down to one old cat, who is most happy
lying alone somewhere.” So, Kerry makes up for it in turtles. She
has one turtle and six fosters. Kerry says they’re kind of fun, not
demanding and darned quiet.

She and Mike can’t wait to go back to Alaska in August. They went the
same time of year before and said the trip was spectacular! We’ll be
excited to hear about their trip, maybe in the next newsletter.

*****
Jeff G. of Minnesota reports they finally got a reprieve from the
heat. They had had had a heat index of 117 the other day. He says it
almost makes you look forward to fall.

He just got back from a bike ride with his wife. They went about 14
miles, but Jeff says he can’t go like he used to. He started out quite
slowly but loosened up after about 5 miles and the rest came more
easily. About 8 years ago they went 47 miles on bike. The most he has
done this year is 18, and that’s pushing it, Mike says. He says that
the “funny thing” is that walking is much more difficult for him than
bike riding. He theorizes that perhaps it’s because you can coast a
little when you hit a downhill part of the bike trail.

As far as pets go, Jeff has 2 golden retriever’s that are his best
buddies, females, aged 12 and 13. He says they are incredible, and a
great help to him psychologically. They take him for a walk every
morning which helps him loosen up. Needless to say, during the heat
wave, the trio shortened their walks.

His thought for the day is that we all need to push ourselves
physically as long as we can. Otherwise he thinks we will lose the
ability to do a lot of things and find it very hard to regain our
skills.

*****

The Editor wants to apologise to all US and Canadian members who were
named in the last newsletter. My first newsletter was completely
obliviated and I typed a second. It went down the same wrotten alleyway
and I hurriedly typed a third, this time including people’s surnames
in my speed. I’m sorry people.

Ageusia

As seen above this is another of the medical terms that is over our
heads. Just for the case of this newsletter I went into Google to get
Wikipedia’s definition of the word.

Ageusia (pronounced /əˈɡjuːziə/ ə-gew-zee-ə) is the loss of taste
functions of the tongue, particularly the inability to detect
sweetness, sourness, bitterness, saltiness, and umami (meaning
“pleasant/savory taste”). It is sometimes confused with anosmia – a
loss of the sense of smell. Because the tongue can only indicate
texture and differentiate between sweet, sour, bitter, salty, and
umami, most of what is perceived as the sense of taste is actually
derived from smell. True aguesia is relatively rare compared to
hypogeusia — a partial loss of taste — and dysgeusia — a distortion or
alteration of taste.

This was very timely for me as I am struggling not only with the
faults mentioned above but my tongue is permanently telling me that
my coffee is red hot and I’m rocketing through milk these past few
months in an attempt to tone it down. Even freshly dealt up food
appears outstandingly hot yet Trish assures me she has no trouble with
it.

Canadian website Medication Availability

This is from David in Australia which many may be very interested in
getting their medication from. Who knows, they may be very keen to
get in Ferriprox which I know several are very keen to purchase for
themselves.

http://ar43.com/important.php?opjID=93g0

And just in from Lihanda’s mom, Marie, in South Africa is the following
story to make your heart stop for a couple of seconds.

Remember, everyone needs a friend..
Someday you might feel like you have no friends at all.
Just remember this e-mail and take comfort in knowing that
Someone out there cares about you…..
And always will.
 
Dave

 

June Newsletter

Welcome

We farewell some and welcome others. This time its hello to Jon in

England. Jon is 50 years old a was diagnosed with SS some
15, or so, years ago. His trigger was from the removal of a tumour on
his brain in infancy. Of course Jon supports a large number of side
effects, using a walker indoors, and a chair outdoors. Thats all I
know, not even his surname to enable me to distinguish him from our
other Jon.

Membership

I see by my map, the United Kingdom and Ireland now boasts 19 members.
We have members in both Irelands, Scotland and England. The only
country not to have any members is Wales. One thing is for sure, there
will be some struck down with SS in Wales , we just haven’t been in
contact with them, or should that read – they with us ! I gave up
distance mind reading when SS came to stay.

Q & A with Dr Levy

The question concerns ceruloplasmin and whether it has definite SS
connections. My questioner thought that is it was connected, every
single SS person should be tested.

ANSWER : “Ceruloplasmin is a protein your body uses to store and buffer
copper. When you have excess copper in your body, your ceruloplasmin
level is low, it means your copper level is too high. A lot of
experimentation in the 1990s proved that copper binding mechanisms are
unrelated to iron binding mechanisms in the body so diseases of copper
toxicity and iron toxicity are therefore unrelated to SS. Michael.”

PLANKING

Every day we seem to hear of complete idiots in this world seeking
their 15 minutes of glory. So much so, I think even Wikipedia are
struggling to list them all. An absolutely bird brained clown got into
our regional newspaper by getting himself photographed lying on his
stomach on a 10 inch round disused wharf pole. A pity he hadn’t
fallen in, stupid twit ! He could book his cloud to zoom around on
for ever and a day if only he helped the affirmed in his local area.

My pet dog read the paper and said’ “I can do a long way better than
that.”

Telephone Exchange

I read somewhere the other day that the cerebellum is just like a
telephone exchange, answering both in-coming and out-going calls
then passing them on. Unfortunately the SS phone exchange operates
with all too many stuffed-up connections, getting dozens of no
responses, and it eventually closes down .

May we all do our very best to keep our own phone exchange operational
for as long as we possibly can.

Tornadoes

Eva reports one tornado came to within 2 miles of their place, but
decided she was too nice a person to drop in. You and George were
exceedingly lucky there Eva.

They are closely looking at things as Eva had had three good falls over
two weeks and George has to lift her up again. I’m concerned you will
do one while George is off to work Eva. In typical SS style Eva is
experiencing sense breakdowns – anger, etc. I’ve told Eva she is no
different to many of us. Mister SS really has his say here.

Both Eva and Michael in Dublin, Ireland have commented how their eyes
are playing a huge part in their SS highway struggle.

Since my Easter Monday disastrous day I’ve been experiencing a book
full of continual SS complications and I’ve been twice to our local
hospital in 5 days with the inability to pass urine. One was at 11 pm
a couple of nights ago. Today is another ghastly Easter Monday-type
experience, so I hope I can get through rough enough.

I hear late in the month of more destructive tornadoes. Joblin in
Missouri’s destruction has good airing on tele. You poor things down
south USA.

7 Ways to help your brain

I took this out of a magazine a couple of years ago and it has just
resurfaced. Very important info to all of us as early dementia is
one distinct SS side effect open to us all ( 1:4).

Research shows that your lifestyle could greatly affect your risk of
contact diseases like Alzheimers and Early Dementia. There are 7
steps to adhere to, to help yourself in the fight.

1. Drink alcohol in moderation. A US study of older women found that
those who reported drinking two or three drinks a day had a 40% lower
risk of cognitive decline than those who claimed to drink nothing at
all.

2. Eat apples. Fresh apples have a high concentration of quercetin,
an important antioxidant that lab studies say may fight the damage
done by free radicals to brain cells. Remember the quote I gave you in
days gone by – An apple a day doesn’t just keep the doctor away, it
keeps the neurologist away.

3. Eat your greens. A study of men aged 50 – 85 in the US city of
Boston showed that those with more folate in their blood showed less
decline in verbal fluency. Folate comes in leafy green vegies such as
spinach, brussel sprouts and brocoli.

4 Eat oily fish. Experiments on mice bred to develop Alzheiners in
them shows that feeding them DHA, an omega-3 fatty acid found in
mackerel, halibut, salmon and sardines reduced by 70% the built up of
blood plaques that are a hallmark of the disease. Also found in
almonds, walnuts and soy.

5. Eat less. Its generally considered that obese people are at a
greater risk. And another mouse study found that animals who have
their food restricted by 40% compared to those which can eat all they
want, again have a reduced level of blood plaque.

6. Exercise. It doesn’t take much. A Hawaiian study shows that
elderly men who walked at least 3 kms a day halved the risk of dementia
compared to men who only did one sixth of that distance – 500 metres.

7. Look after your ticker. High LDL cholesterol, high blood pressure,
smoking and diabetes are all well known factors to create heart
diseases, but a study of 9000 Californians found that they also raised
the risk of dementia, 46% for diabetes, 42% for high cholesterol, 26%
for smoking and 24% for hypertension. These are cumulative – if you
have all four your risk is boosted by a whopping 237%.

Have a real good think about where you are heading yourself.

Myelopathy

Yet another of those confusing medical terms used with describing SS
side effects and one which you possibly skim over until it is clearly
diagnosed in you personally. It is one of the top three or four side
effects most commonly referred to in medical ‘guff’ on SS.

This is what Mr. Wikipedia says about it:

“Myelopathy refers to pathology of the spinal cord.[1] When due to
trauma, it is known as spinal cord injury. When inflammatory, it is
known as myelitis. Disease that is vascular in nature is known as
vascular myelopathy.”

I guess in our cases it is known as myelitis. With myelopathy in
SS, the lower spine is noticeably affected because excess
hemosiderin ( or iron salts) are not wanted higher up the Central
Nervous System ( mainly the areas close to your brain) and the
unwanted iron trickles its way down until it can’t go much further.
This will display itself as fairly permanent to permanent lower back
pain, bowel and/or bladder clearance complications.

Apart from bowel and bladder, it first started displaying itself in me
from both knees down, initially in the feet, but for some months now
I’ve noticed my calf muscles were going on holiday. For several
weeks now I have found while showering the calfs were getting unaware
of really hot water, yet move the hand piece around to the shins and I
wanted to scream !

Of course 9 /10 of us have had some balance troubles right from the
start of our SS career, but once myelopathy takes a firm hold, ataxia
is noticeably worse.

Don’t quote me, but I firmly believe that myelopathy usually takes
some time to show itself up in SS patients. I guess if it were in the
very early stages of SS, it would be an excellent indication of a very
large amount, or else long term bleeding. In my own case myelopathy
first showed itself in bladder , then bowel complications some 5 to 6
years post-SS, and the constant lower back pain has only arrived this
past few weeks, sufficient for my local GP doctor to immediately
confirm my own diagnosis of myelopathy a month, or so, ago.

Most websites on myelopathy are spinal cord injury/quadraplegic /
paraplegic-orientated, but there are many other ways to contract it
other than trauma.

Some people incorrectly think that because they have difficulty
walking because of ataxia, it must be myelopathy caused, but in fact
ataxia is cerebellum ( telephone exchange ) related. What this does
full confirm is that every one of us have landed ourselves firmly into
probably the most variable medical complaint known to man, and
although many ( or should that read most ! ) of us get frustrated at
the assistance we are given, it is outstandingly ( for want of a worse
word !) technical.

Meanwhile every single one of us needs to be almost punishing our
brains by overloading it with exercise, be it crosswords, Sudoku,
reading the daily newspaper, emailing, whatever. (a) it keeps your
brain occupied and stops it being all self pitied, and (b) you are
teaching other departments to compensate for those slowly shutting down
due to SS. You see WE CAN HELP OURSELVES !

THAT White Stuff

Many, if not all, of you with catheters will be aware of a white
substance in your pee. At times this can be quite considerable.

I asked several medical people what it actually was and every single
one pawned me off by saying ” oh, thats something relevant to
catheters.” That explanation is not good enough for me, and my
Continence Nurse, Phiona, soon worked that out in reading our monthly
newsletters, so she she set about finding out precisely what formed it.

Phiona advices me it is salts from the bones which forms as calcium in
the bladder and in prevalent when not undertaking sufficient weight
bearing exercises. A bit like osteoporosis, it is normal, but usually
peed out and not seen. It has been known to block catheters from time
to time.

Enter Dave Hill, a very short strawed SS person. For months I’ve been
getting untold ‘white stuff’. In fact twice recently my night and day
bags would not drain out via the release valves. but by putting my
hands on both sides of the bag and pushing I would get a firm white
substance to fly out at speed. Twice this was thin pure white solid
‘stuff’ about the size of the old New Zealand thrupence or one cent
piece, but quite square in shape.

Phiona assures me of the huge importance to drink Cranberry juice for
this very reason, and while this was happening I was actually drinking
very watery Ocean Spray cranberry drink, but I have returned to
buying large bottles of juice and making up my own brew. Sometimes I
have it cold, sometimes hot. Now I only see a very small amount in
the night bag line which I hope is un-restrictive.

Thank you Phiona.

Different Terminology

It tickles my fancy how we get considerable variations of terminology
from one country to another. Admittedly, those of us in the little
group of islands away down near the Antarctic are probably still back
in 19th century times, but the more one has to do with people from
‘over yonder’, the more examples display themselves.

‘Mom’ and ‘mum’ is an excellent immediate example. I often say that
we need a sand blaster to get at the concrete lining of hemosiderin
off our SS brains. That apparently confuses many of you. I’m sorry, I
should use the term cement. In New Zealand ‘cement’ is the powdery
stuff you mix with water and gravel to make ‘ concrete.’ There goes
another one – we say gravel roads, meaning stones that have been
through a grinder and broken down and spread on back country roads. I
forget what you stars and stripers call this compound.

For umpteen dozen years we have talked ‘solid plastering’ here,
meaning another form of the mixing of cement and water which is then
spread with a trowel over the outside of a building. Most of you,
including our Aussie neighbours give it some other title.

Being a motor vehicle freak, I get continual variations of terms also.
This on more than one occasion has created problems when ordering
parts from America for my restorations. One has to really think
yankee-style, or get something you most certainly do NOT want.

Just more of life’s ‘curve balls’ as I’ve become used to hearing from
you people who drive on the right hand side of the freeway – highway
to us thank you !

CI Hook-up

This just in from Craig in Christchurch, NZ after his CI hook-up just
2 days ago.

Hi,Dave

Thought I’d give another quick update before the newsletter goes out.
I had another successful day I’m understanding speech well without
looking @ the speaker  also voices are sounding almost natural and I
can pickup difference  in sounds of voices.  Last night I spoke with
mum on the phone and was able to understand around 80%  also spoke with
Penny ( the CI Clinic Rehab Officer ) using the phone today, Penny
told me there very few people who can use a phone on the first day.
Both Penny and Leonard ( the CI Audiologist ) are very pleased with the
way everything is progressing.
Sako ( Craig’s little lady ) and I have been enjoying a more natural
flowing conversation in the car and at  home ,Sako has afew days off
work and has been coming along with me to the clinic everyday.

I’ll let you know how thing are progressing again in afew days, my
brain has been working overtime so time to call it a night.

Cheers Craig

This is fantastic Craig and yes to use a telephone so quickly is out of
this SS / CI world. Keep it up forever and a day.

Dave

May Newsletter

This month we must say welcome to Christoph, a french speaking Belgium
man who lives close to Brussels. He is 56 years old, had a motor
cycle accident in 1973 to set the SS ball rolling. Christoph lost
his right arm in the prang also. In 1999 he had spinal surgery to stop
phantom right arm pain – Drez surgery on the neck’s nerves . His SS
was diagnosed at the end of 2007 thanks of course to the value of
MRI’s. – ( who was the lovely person who invented these ) He is ever
grateful to his dear darling wife for her very close attention to his
troubles as she is a doctor and 3 years ago Christoph went to John
Hopkins for an appointment with Dr Levy whom he found fantastic.For two months now Christoph has been permanently on Ferriprox which is
available in Belgium and he believes it is responsible for changes
within himself.

T’other to say welcome aboard to is 46 year old Bill in Fife, Scotland. Bill was officially diagnosed in February, just 3  months ago.

I know little else about Bill at this stage. So Heather,
you are no longer the sole Scots member in our international clan.
Bill actually lives quite close to where one of my great grand fathers
was born and bred, a stone’s throw from the infamous Lockerbie, site
of that terrible Pan Am air crash, a bombing ordered by that no-good
Gaddafi currently featuring daily in our news.

These two gentlemen make members # 75 and 76, not that we are hell-
bent on getting large membership, rather the contary, but we want you
to know there are many others traveling the SS highway with all its
steep hills and sharp corners.

There are several other potential new members hanging around in the
backstage curtains also. One man has twice made contact with me, but
despite me trying to reply something like 12 – 15 times, his email
server rejects my emails every time, so we remain unconnected. I’ve
even had other people try on my behalf. Sorry Robert and your un-named
dad, but I have tried until I go blue in the face fellas.

More International Turmoil

Not wanting to be ignored ( now thats a laugh ) the land of Stars and
Stripes have hit the headlines with massive tornadoes and I sincerely
hope non of our members were in the thick of their paths as even more
international destruction was created. Each night on the tele news
we hear of hundreds of deaths in the south-eastern states and our
thoughts are certainly with those very unfortunate people who suffered
from yet another natural catastrophy on our planet.

I have heard from members who received minor troubles by the
tornadoes, but I really hope that has been the worst of it for our
members.

The Eye Department

After my comments in the last newsletter, several have said about me
describing identical visual symptoms to them. So much so, I’ve
created a file on this. Before long I may contact every single one of
you to see just how prevalent eye troubles actually are. The
following email from B. and B., sisters of Carolyn in
Minneapolis is very typical.

“Dear Dave– thank you for this newsletter packed full of such good information.   You blow us away in the good work you do for all SS sufferers, especially knowing how hard it must be for you given the
problems you are having with your vision.

Our sister Carolyn has suffered years with the eye problems just like you mentioned and has had some surgery, but she was just told this week
she has “nystagmus” which you spoke of in the newletter.  The clinic referred her on to another doctor whom she will be seeing in a couple
of months.  If anything comes of it, we will let you know..

Our
thanks and best wishes to you–B and B from Minnesota. “

Kathy, our resident physiotherapist, and her man friend, generously
invited Trish and I out to an evening meal in a new local restaurant
the other night and I was telling Kathy that sometimes my eyes have
been pulsating in and out, but Kathy assures me the eyes are actually
rotating, not pulsating, to give that feeling. Thankfully, in my case,
I’ve only experienced it twice as it wasn’t at all pleasant while
happening ! The second time I’d swear I was heading for a migraine,
however this didn’t eventuate. ( see later on in the newsletter under
Oh No.

Why me

As some of you know I have for several years had my own little theory
about those of us who have been blessed with SS, and that the illness
came as a result of certain ‘instances’ which was often in very
historical times, but affected our mental ability to fight internal
complications. These complications may have even taken place in
infancy or young childhood, or over a period of time as it did in my
own case. This led to me sending an intimate letter and request to 6
fellow members I thought I could trust to be fully honest.

Of those six, two failed to reply, two admitted to instances which
left major mental scars on them and two tried to nicely tell me I was
living in fairyland. ( see Case Reports later on it in the newsletter
)

Cruisin’ along

It was interesting that next day after writing up about Kerry going for
another ocean cruise, that our local regional papers said that since
2006 New Zealanders have increased their participation in cruising by
62%, a whopping 36% increase last year alone.

The Whats Ever’s Next File

The japanese, nowadays, are a nation set on creating great new
inventions. A huge change from the days when they copied everything
that overseas countries were producing. Our local regional newspaper
the other day showed these way-out pink gumboots.

The ‘art’ is supposedly called Chindogu and Wikipedia says this is
the japanese inventing everyday gadgets which should go under the title
‘unuseless’ – i.e. not useless, not useful. I really shudder to think
what could be next !!

The newspaper says you never need to worry about stepping into puddles
that may be a little too deep, anymore. With the jumboots the water
will simply drain out the front. Oh, very nice !!

Locating People

As many of you know I’m obsessed with knowing EXACTLY where people
live and my USA, United Kingdom, Australia and New Zealand maps are
tending to get many stickies on them. I’m in need of a Canadian one
next, now we have three members living up there.

Roy of Massachusetts said he came from S. and no way could I
find it. After several emails to his darling Jeanne, I have now
worked out almost exactly where they are. Being a very small town of
only 824 souls, none of my Atlas or full page map shows them.
S. is in a the middle of quite an area with not an awful lot but
dirt around it, however there are some indian reservations close-by to
add color to the landscape.

Oddly enough Rich lives only 120, or so, miles away as the crow flies
and I’ve insisted the two men get together so that they can both be
transformed. Wives as well. At least Rich’s M. got itself
onto a map.

Gosh, another person living in a very geographically ‘different’ spot
is Bob in the mountains between Denver and Salt Lake
City. They are on the banks of the famous Colorado River.

I guess it is to be expected that as numbers increase in our group,
those living in ‘out of the normal’ places simply must appear. I’ve
been again asked about where all everyone lives in America, so I guess
I should construct a USA geographical lesson one of these days ! I
can’t talk, in a 3 mile radius of here, we have probably only 100 souls
and that may be well over-estimating.

Another Cochlear Implant

Craig on the South Island is now in the CI brigade. He does look a bit
groggy in the photo though taken soon after his transfer from the
surgery into a ward room.

Mike of California

Please give a prayer and a thought for Mike in California
who is getting a real hard time at present. Laurettia, his wife, has
just enlightened me to the fact Mike had several strokes 11 months ago
and since then had been struggling with life. So much so Mike can’t use
the computer. Many times I have wondered why Mike was no longer
sending me daily ‘funnies’.

All the best to you both as you fight in the SS war.

Dysarthria

As we all know with our SS, there are dozens of medical terms which
often are well and truly over our heads for plain understanding.
Dysarthria is one such term, it actual means a motor speech disorder
resulting from neurological injury primarily characterized by poor
articulation – aphasia i.e. a disorder of the contents of speech.
Other subsystems are also vulnerable such as respiration, phonation,
prosody and articulation. Many of us, me included, have one or more of
these imperfections.

Dysarthria hinders control of the tongue, throat, lips and lungs.
Often swallowing will be included in with this also and I remember 2 or
3 of you saying this was a real problem for you. The general area
of breakdown in our SS case is that the cranial nerves are well coated
in hemosiderin. Those affected are the 5th, 7th, 9th, 10th and 12th
cranial nerves.

Case Reports

Thanks to Martha for putting me onto a website with a report written
with the exact same thinking that Martha and I have shared for quite
some time. i.e. that some alterior, but to date acknowledged trauma,
which in days gone by has affected our brain’s ability to fight
internal iron overload to the extent that personal defense is close to
zero.

I know there will be many trained medical people say ” don’t be silly
Martha and Dave ” but maybe we are the ‘SS carpenters’ who have the
ability to think outside the square. After all why do so few
contract SS when thousands, if not hundreds of thousands, of the
world’s population get into the exact same situations that us ‘short
strawed’ people get into and SS forms within us, but not them. Perhaps
one day we’ll be made Sir SS Dave and Lady SS Martha (rather unlikely. The Queen)!!!!!!!!!!

Its fantastic to think that there are others thinking ” why those, why
not them.”

Superficial siderosis – mechanism of disease: an alternative hypothesis
Sudip Nanda1, Shree Gopal Sharma2 and Santo Longo3

1 Department of Internal Medicine, St Luke’s Hospital, 801 Ostrum
Street, Bethlehem, PA 18015; 2 Department of Pathology, University of
Arkansas, Little Rock, AK; 3 Department of Pathology, St Luke’s
Hospital, Bethlehem, PA, USA

Superficial siderosis is an increasingly common diagnosis due to
advances in imaging. Resulting from the presence of blood in the
subarachnoid space, it leads to progressively debilitating ataxia,
deafness and myelopathy. Magnetic resonance imaging has revolutionized
diagnosis and management of this condition. In one-third of patients
with this diagnosis, no subarachnoid bleed can be identified. A lack of
sensitivity in our ability to detect subarachnoid bleed is a possible
explanation in this group of patients. A novel approach would be to
consider defects in the body’s defense against intracranial iron
overload as a possible cause of this disease. A disproportionately few
patients develop superficial siderosis compared with the number who
develop subarachnoid bleed from various clinical conditions. Normal
physiological protective mechanisms exist in the central nervous system
to protect it from damage by blood, haeme or free iron. Deficiency and
defect of these protective mechanisms can provide insight into the
pathogenetic mechanism of the group of patients where no subarachnoid
haemorrhage is identified.

Martha is currently working with Dr Nanda about the question of other
family members being open to catching SS also. She wants her brother
and son to both get MRI’s carried out on their heads to be certain they
haven’t been blessed with the ailment.

One day people, all will be revealed about the craziness of SS.

Thats this month’s educational exercise folks !

SS/ CI’s
Michael in Ireland is getting on famously with his new implant and
last night phoned my wife Trish, to talk to her. They both got on very
well together as Trish has 12.5% irish blood in her. His Rehab Officer
has him introducing music back into his brain again as well. You are
doin’ famously Michael.

Oh No

The last 10 days of March have been hell on wheels. After me preaching
the value of the ming blue glasses to stop migraines and double
vision, I was hit two days in a row with migraines, then on Easter
Monday I came down absolutely lousy, but migraines stayed away, only
just. I have no explanation to such an abnormal occurrence. It was
another noticeable step down on the SS ladder though, and since then
I’ve been deeper down in the SS pit. One hopes there is a bottom to
put the feet on !!

It is supposed to be ‘ up from the grave He arose’ on Easter Monday,
not trying to climb into it !

I have since read on Google that migraines are often caused by
sinusitis and as my sinusitis is extremely lousy and painful, that is
the most obvious cause of two migraines, two days in a row with ming
blues on. I’ve been waiting since December last year to go see the
Ear Nose Throat Department at our Regional Hospital, but they keep
putting off my appointment and sending replacement times. I think I’m
down to about June now. Never mind, my 1940’s model Chev hearse is
nearly finished !

Googling SS

I don’t normally have the time to spend Googling Superficial Siderosis
but recently I did. One site made mention of studying a 55 year old
man with Wilsons Disease. We have only one member with the honors of
that ‘trigger’ and as Rich in Massachusetts is 62 this year, I can
only assume it was a study done on him in days of yore. Great to see
though Rich, it all adds to the edecation..

Ferriprox Trial # 2

Martha emailed Dr Levy and asked when the second, and this time a 12
month, trial would take place. Dr Levy replied to say the FDA has
advised no conclusion to their investigations yet. Keep hoping fellow
members.

I hope you had an interesting read.
Dave