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!
 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 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  !
 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.
 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 !
 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.

February Newsletter


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.



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.


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.


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



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 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.


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.


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.


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 !!

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.


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  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 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.


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.   



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

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.


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.


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

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

“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

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.