Re: IAAD - My email sharing my story with my coworkers

[Guest guest]

excellent ! what a way with words . Thanks B.

[Guest guest]

excellent ! what a way with words . Thanks B.

[Guest guest]

Excellent ! You have a real flare for writing. Dave Barry couldn't

have done better.

Love,

Pam

IAAD - My email sharing my story with my coworkers

> Greetings everyone!

>

> I just thought I would pass along an email I sent to my workmates about

the

> International Ataxia Awareness Day. Yes, I know this is the MSA support

> group, but hey! Lots of us start this disorder with 'just' Sporadic OPCA.

>

> Anyway, I thought I would share this. As you can see, I'm starting to

deal

> with my last visit to my neurologist. This is just another journal entry

> from another journeyman. Hope it helps in some small way.

>

> <>< <>< <>< <>< <>< <>< <>< <>< <>< <><

>

> Did you know an estimated 150,000 people in the USA are affected by

> hereditary and sporadic ataxias? No, 'ataxia' isn't a foreign cab! It

> means incoordination. It also describes a group of chronic and

progressive

> neurological disorders, which impact coordination and other learned

> activities. This includes balance, writing, typing, walking, driving, and

> even speaking and swallowing! It strikes without regard to age, gender,

or

> race.

>

> See? Out of more than 275 million people in the USA, I have this. My

> mother was right. I am at least one in a million! Well okay! Out of

every

> million people, 546 have inherited or sporadic ataxia.

>

>

> International Ataxia Awareness Day:

>

> So, with the awareness day this Monday (September 25, 2000), I thought my

> own continuing saga might help share this story. Consider this a worms

eye

> view of an international effort to raise awareness of Ataxia and related

> disorders.

>

> I was diagnosed with Sporadic OPCA (Olivopontocerebellar Atrophy, also

> somtimes called Spinocerebellar Ataxia). You do not know that name off

> hand? I would be surprised if you knew that DoctorSpeak. It indicates a

> rare set of progressive neurological disorders due to loss of function in

> certain parts of the brain. The 'Sporadic' part says no one else in my

> family has or will get this condition (Thank God!).

>

> Well, since my last neurologist visit I developed additional symptoms. My

> neurologist indicated I may have multiple systems atrophy (or MSA, also

> known as Shy-Drager Syndrome). Or it may just as easily turn out to be

> something else. It's just too early too tell.

>

> Okay, right. I can't help but remembering ... " Sticks and stones will

break

> my bones, but names will surely confuse me! " Come again? That's not the

> right verse? This old dog sure thinks it works.

>

>

> So what does this all mean for me?

>

> Well, this name dropping just means my symptoms now include autonomic and

> parkinsonian features. Don't you just love this DoctorSpeak?

>

> A couple examples of autonomic problems: I rarely drive, due to blurry

> vision. Okay, I can deal with that. I work from home. So, not driving

> isn't a real problem. A definite blessing from God! But on the down

side,

> when I get a chest cold, I get asthma-like attacks that asthma medications

> do not touch. Not even a prednisone taper touches it. Why? Apparently

one

> part of my autonomic system clamps down the airway, but the part that

opens

> it up isn't working well.

>

> Some parkinsonian features: Well this includes stiff and tight muscles,

> stooping posture, feeling as if I move through molasses, and sometimes

feel

> as if my feet are 'stuck' on the floor. Unfortunately, medication for

> parkinson disease only rarely helps these symptoms. Fortunately, it's not

> constant. Yet.

>

> Don't forget coordination problems (after all, this is about International

> Ataxia Awareness Day): In addition to things I already mentioned, let me

> share a 'stupid ataxian' trick. If I watch a movie with lots of visual

> action (such as Star Wars or Gladiator), my ataxia symptoms get a LOT

worse.

> What? You heard that shout of glee? That was my wife saying " Great! Now

> you don't have any excuse to avoid my 'Chick Flicks'! "

>

>

> So how am I handling this?

>

> Hmm... Well, I try to be proactive. So, we moved to a more accessible

> house. I am training my dog to help act as a service dog to help me as my

> ability to balance and reach for things deteriorates. So, things are

under

> control, right? I even try to keep a sense of humor. Okay, okay! You're

> right. Perhaps it is stupid humor, but it helps.

>

> These new symptoms just concerned me. After all, I was trying to adjust

and

> adapt. That is, I was just concerned until my doctor said " You're not

sick

> enough yet to make a definite diagnosis of MSA. " !!?? Now, that I do NOT

> want to hear.

>

> How do you deal with the fact this will just get worse? How do you handle

> it when very few medications help, and none can stop this? I'm supposed

to

> be in the prime of my life ... my kids are still in school ... middle

school

> and high school! How do you help your wife and kids face this?

>

> Overwhelmed? Depressed? You betcha! In fact, I spent the past eight

> months in a pretty severe funk. But... " When life hands you lemons, go

> make lemonade! " So, I work on the depression. I lean on friends, my

church

> and a support group. I even share the story. I have a faith that helps

me

> see this as just a different road... a road less traveled. Life is about

> making the most of the Journey. Oh, don't get me wrong! I expect the

> lemonade to be sour occassionally. And sometimes sweet. But that, after

> all, is how life works.

>

>

> So how can you help?

>

> Though I appreciate the thought, I really do not need advice on what this

> might be. In the past two years, I had more medical tests than most

people

> have in a lifetime. Heavy metals, diabetes (fasting and glucose tolerance

> ... twice), DNA tests, 6 MRIs, vitamin B12 and E deficiencies, detailed

> opthamology exams (twice), lyme disease (twice), a sleep study, and so on.

> My doctors are sure what this is not. Unfortunately, there is no

definitive

> test for MSA. Only time, as my neurologist indicated, will tell.

>

> Nor do I need Aunt Margret's cure. It might help with colds, I'm sure.

It

> might even clean tar right off of my car. But no matter how much we

insist,

> those damaged neurons will resist ... Eh? Oh, okay. I'll be serious!

> Sigh! ... I really am working with a very talented group of doctors and

> physical therapists. We're doing what can be done.

>

> But there is something you can and even should do. When you see someone,

> who appears drunk, please do not rush to judgement! That just might be

> someone, who needs your understanding and acceptance. After all, they may

> have just heard " You're not sick enough yet to make a definite

> diagnosis... " .

>

> Excuse me? Sure! Please, feel free to share this. Perhaps it will help

> someone along the way.

>

>

> Regards,

> =jbf=

>

> B. Fisher

>

>

> Want to know more about ataxias and multiple systems atrophy?

>

> http://neurologychannel.com/msa/

>

> http://www.ninds.nih.gov/health_and_medical/disorders/shydrger_doc.htm

>

>

http://health.yahoo.com/health/Diseases_and_Conditions/Disease_Feed_Data/Shy

> _Drager_syndrome/

>

> http://internaf.merseyside.org/

>

> http://www.ataxia.org/

>

> http://parkinson.org/autonomicns.htm

>

>

>

>