[INTERNAF] Introduction
Bill McNeil
Hello Everyone:
Please let me introduce myself; my name is Bill McNeil, my wife's name is
Eileen. She is the afflicted half of this combo and we're not too terribly
sure of exactly what type of ataxia she has. The diagnoses seem to vary from
doctor to doctor and some of the doctors even offered more than one
possibility. The leading candidates, at the moment, are spino cerebella
degenerative and olivopontocerebellar atrophy.
Her symptoms are severe loss of balance and stiff ataxic gait, periphial
neuropathy, particularly in her feet, vision difficulties and minor
dysarthria (We didn't even know that word until someone on this net
explained it to us). She doesn't have any difficulty in speaking clearly,
the problem is calling up the appropriate word from her mental hard drive.
Most of the symptoms seemed to be on a plateau for the last year or so but
in the last few months her balance problem has worsened noticeably. She has
been evaluated by several nuts and bolts neurologists in both suburban
Philadelphia and here on the Eastern Shore of Maryland and also by Dr. Paul
Fishman at Johns Hopkins.
They vary slightly in approach and diagnosis but the conclusions are the
same; whatever it is you've got it and there isn't anything we can do for
it, at this time.
Eileen has a sister, several years older, with similar problems. The
diagnosis she got was hereditary ataxia. In the short time I've been
monitoring this net, I've found out that that covers a host of different types.
Eileen and her sister have racked their brains and quizzed all the living
relatives but nobody can come up with knowledge of any close family member
in this or the previous generation, with this disease. Is there any body of
information about this skipping a generation as diabetes has been known to do ??
We are both in our late sixties and we live in Salisbury, Maryland. I'm
semi-retired; stopped the conventional rat race at the end of 1995 and now
run a part time consulting business, out of our home. We have four children
and five grandchildren none of whom, thankfully, have shown any signs of the
problem so far. We are however getting very concerned, paticularly about the
grandchildren. If anyone has a similar family situation we would be most
grateful for your input.
I know there is lot of traffic on this net and I don't want to risk
overload. I think the foregoing gives the basics of our situation. We are
both delighted to have found this group and we look forward eagerly to more
helpful information and hopefully to contributing.
With kindest personal regards
Eileen & Bill McNeil
paul hellyer
In message <1996120219...@shore.intercom.net>, Bill McNeil
<wmc...@shore.intercom.net> writes
>Hello Everyone:
>
>Please let me introduce myself; my name is Bill McNeil, my wife's name is
>Eileen. She is the afflicted half of this combo and we're not too terribly
>sure of exactly what type of ataxia she has. The diagnoses seem to vary from
>doctor to doctor and some of the doctors even offered more than one
>possibility. The leading candidates, at the moment, are spino cerebella
>degenerative and olivopontocerebellar atrophy.
>
>Her symptoms are severe loss of balance and stiff ataxic gait, periphial
>neuropathy, particularly in her feet, vision difficulties and minor
>dysarthria (We didn't even know that word until someone on this net
>explained it to us). She doesn't have any difficulty in speaking clearly,
>the problem is calling up the appropriate word from her mental hard drive.
>
>Most of the symptoms seemed to be on a plateau for the last year or so but
>in the last few months her balance problem has worsened noticeably. She has
>been evaluated by several nuts and bolts neurologists in both suburban
>Philadelphia and here on the Eastern Shore of Maryland and also by Dr. Paul
>Fishman at Johns Hopkins.
>
>They vary slightly in approach and diagnosis but the conclusions are the
>same; whatever it is you've got it and there isn't anything we can do for
>it, at this time.
>Eileen & Bill McNeil
>
Here is a suggestion. Have you had Eileen's
blood tested for its vitamin E level? My daughter had similar symptoms
and after much investigations it was discovered that she had a gene that
stopped the absorption of vitamin E and thus caused the Ataxia.
I hope I have been of some help.
Best regards
PAULK . . . . (England)
--
paul hellyer
greg david mcglaun
Hello,
My name is Greg McGlaun and I am a mechanical engineering student
at the University of Illinois at Urbana-Champaign. I am presently
involved in a senior design project with two classmates. We are trying
to make a device/method/whatever for therapists to test arm coordination
of those with ataxia. Actually, we are almost done building a prototype
that was requested by our project sponsor who is an occupational
therapist. The device tests movement speed, movement accuracy, and
tremor of the arm.
Although my project team has learned a lot about ataxia and
movement control, our limited knowledge is out of books and telephone
calls to people. We still have never seen a person with ataxia or what
the effects look like. In addition, we do not have a sense of how useful
the work that we are doing is in the real world. We are just following a
design that was recommended to us. However I have gained an interest in
the project and plan to continue working on it next semester and possibly
beyond.
We would appreciate any feedback that we could get regarding the
following matters:
1. How do doctors or therapists know that one has ataxia? Does a
doctor listen to a list of symptoms that the patient describes and make a
judgement call or are there objective tests involved?
2. How do doctors or therapists know if symptoms are improving or
getting worse? Again, is this a judgement call or are there objective
tests involved?
3. Has anyone been in a therapy room and undergone coordation
tests?
4. Does rehabilitative therapy help?
5. Would it be useful to have an objective test of movement control
of the arms?
Thanks in advance for any feedback.
bye.
greg.
Ann...@aol.com
Hi everyone,
My name is Nigel and I have MSA (multi-system ataxia) and I have been
wondering if there is any of my name sakes on the list out there. The family
name is Molesworth and I have a daughter who has the symptoms of ataxia and
we are trying to trace any of our family to find out if it has been passed on
through the genes.
I would like to hear from anyone who knows any of the Molesworth family, not
only in GB but in any country.
Best regards to all.
Nigel.
irvin f eder
Hello, everyone!
I would like to introduce myself. My name is Irv, (Irvin). I am an 84 year
old male living in northwest Florida.
I first noticed a loss of equilibrium at 65 years, but continued to be very
active. I was diagnosed as having mild cerebellum ataxia at about 78, and
as having peripheral neuropathy at 80, after which I started walking with a
cane. I was diagnosed as having polymalignia rheumatica, (PMR), about 9
months ago, and am on a low maintenance dose of prednisone, 5mg per day, but
hope to withdrawal completely in a year.
There is no history of ataxia in my family; so it is assumed that I have
acquired both the ataxia and the neuropathy as a result of my longtime
exposure to heavy metals and organic solvents in connection with the
industrial surface coating business I owned for many years.
I am the principal caregiver for my wife of 62 years. She is 86 years old
and has been house bound for about 10 years. I have excellent respite care
for 48 hours each week. I still drive my car, work out three times a week
and do what needs to be done around town. I continue to actively trade in
the stock market, but much of my day is spent in physical therapy in an
effort to maintain my strength and range of motion.
I have noticed a distinct loss of ability to manage things in recent weeks.
I speak less distinctly, have trouble seeing and some trouble swallowing and
less control over my motor nervous system.
I know that there are many of you out there who are much worse off than I,
and my heart goes out to you; since I know a little about what you go
through by day and by sleepless night.
I hope you will respond to my wish that you correspond with me by a posting,
or by Email, to let me know how you compare to my profile. I am particularly
concerned about the anticipated progress of my maladies, and my prognosis.
I wish you the best, now and in the New Year!
Irv.
Fraser J. Goodmurphy
> My name is Greg McGlaun and I am a mechanical engineering student
>at the University of Illinois at Urbana-Champaign. I am presently
>involved in a senior design project with two classmates. We are trying
>to make a device/method/whatever for therapists to test arm coordination
>of those with ataxia. Actually, we are almost done building a prototype
>that was requested by our project sponsor who is an occupational
>therapist. The device tests movement speed, movement accuracy, and
>tremor of the arm.
> Although my project team has learned a lot about ataxia and
>movement control, our limited knowledge is out of books and telephone
>calls to people. We still have never seen a person with ataxia or what
>the effects look like. In addition, we do not have a sense of how useful
>the work that we are doing is in the real world. We are just following a
>design that was recommended to us. However I have gained an interest in
>the project and plan to continue working on it next semester and possibly
>beyond.
Hi Greg, your project is very worthwhile. See my comments below.
Best,
Fraser
> 1. How do doctors or therapists know that one has ataxia? Does a
>doctor listen to a list of symptoms that the patient describes and make a
>judgement call or are there objective tests involved?
As I had an unusually thorough diagnostic work-up, I can comment about how
a diagnosis OUGHT TO be made. Unfortunately, a significant number of MDs
rely on their judgment alone. I had numerous standard Neurological
Examinations to test sensation, perception, and coordination followed by
EMGs, MRIs, and CAT scans, concluding with a spinal tap and a muscle
biopsy, which my neurologist screened under an Electron Microscope for a
pattern of demyelinization and deaxonification specific to the type of
ataxia that she diagnosed.
> 2. How do doctors or therapists know if symptoms are improving or
>getting worse? Again, is this a judgement call or are there objective
>tests involved?
Degeneration is almost impossible to quantify without yearly Muscle
Biopsies or MRIs. Because the former is extremely intrusive and the latter
is typically classified as an unnecesary expense, MDs rely on their
judgment. Because I have a type of Ataxia that is well-known to remit, my
Neurologist has never claimed that I am 'better' or 'worse'.
> 3. Has anyone been in a therapy room and undergone coordation
>tests?
I haven't personally, although I gather that training simulations in VR
environments have been developed.
> 4. Does rehabilitative therapy help?
A significant proportion of the Medical Establishment doesn't seem to think
that rehabilitation for degenerative neurological disorders is worthwhile.
I get the impression that my neurologist feels that all the physiotherapy
in the world won't halt the destruction of nerves. On the other hand,
there is a lot to be said for strengthening what remains.through exercise.
> 5. Would it be useful to have an objective test of movement control
>of the arms?
Yes, I think an objective test of arm coordination would be useful. My
neurologist gauges my coordination with the standard pointing test. I can
point to my eyes without too much difficulty, but I've almost blinded her
(semi-intentionally) when she urges me to speed up.
Perhaps you could mail n...@mr.net about their progress on the Unified
Ataxia Scale? I remember seeing a brief article about its development in
Generations last year. Fitting your device into standard diagnosis seems
very wise.
