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
