Uncertainty as Progression Continues

General
1

Hi All,

Current Status and Question

Cut to the chase and fast-forward to 2013. I passed through all the known progressive indicators and reached a plateau 6 weeks ago. Four days ago, I've assumed I've reached the early stage of the "final stage" of muscle atrophy.

The progression now is pause for evaluation of the future. I've read that expected life-expectancy at my age could be 10 years--10 years from the onset (7 down), aka, 7 down and 3 to go. Or does the clock start its countdown now or after the continued weakness and atrophy. Please be candid in any rely--I do not fear death..I do not believe in the pearly gates and reincarnation.

Any comments, advice or insight? For those who know wear I'm headed, I already created a "Final Exit" and am a an ardent believer in the "Right to Die" with dignity.

Condensed Prelude

My name is Sid; 67-yrs-old. My first of 5 minor strokes in 2006 resulted in destroyed leg nerves and total imbalance--many falls. The first "N" and subsequent 2 didn't have a clue and siad "this good as it gets". The 4th of 7 Neurologists finally put me through the wringer, including the dreaded spinal tap. His X-Ray clearly showed a "dropped Cerebellum". He went as far to say that I had holes in my head and a cerebellum "disorder".

"N" #5 was the "Super-Doc" in Parkinson's Disease at NewYork-Presbyterian Hospital. Number 5 guaranteed a "bulls-eye" diagnosis by one of the top ALS specialists in the world--the elitist made it clear that he didn't see patients unless they were already diagnosed with ALS. Despite my low esteem toward elitist docs, he replayed the tune, "You have a Cerebellum Disorder, most likely caused by my minor stroke in 2006; no cure; no drug inhibitor to guaranteed progression: Sentence: Death from final stage of such disorders (energy drain, weakness and muscle atrophy). He had no treatment or therapeutic aid--his departing words were simply to continue eating nutritiously, weight-training, and to never attempt to drive again.

I will start over again next week with "N" #7.

Thank you all who have read this post,

Sid

2

Hi Sid,

I've just read your post. It saddens me because I can't offer anything constructive.

I applaud you for being so candid, and share your beliefs. Lots of love Beryl

3

I also share your non beliefs. Cant say anything else Sid, but the whole Ward family send their love.

4

I admire how you talk and how you have accepted the situation, my dad was exactly the same with a fantastic sense of humour. Its a year on tuesday since he happily went, he’d wanted it for a couple of years as he knew he had no quality of life. He died in his sleep after catching pneumonia for the 4th time in as many months, the image of him half smiling at the end will stay with me forever.

5

I was diagnosed with SCA in 1988. at that time I was told that I had a life expectancy of 10 years. For a brief period I went into a depression but then I realized if I only existed waiting to die I would be wasting what little life I had left. So I decided to live each day to the fullest .I was married in 1991 (I was walking with Canadian crutches at that time), moved from MA to FL (moved to a wheelchair), bought a home, have been involved in many political issues (from a wheelchair), volunteered my time to worthy organizations, and now am a member of a motorcycle association , ride in a sidecar (I last drove in 1989). I have I life better than I could have dreamed of because I chose to live one day at a time instead of waiting to die. Every day is Christmas and every night is Thanksgiving!

Tumbles

.

6

Dear Sid, I read your post with much interest. I must admit though, that I don't place much faith in what neurologists say about ataxia. Although I respect my neurologist (ataxia expert and researcher), even he admits so very little is known about ataxia. I am 59 years young and was diagnosed with Sporadic Cerebellar Ataxia (non-hereditary/unknown cause) 10 years ago, although I think I had small symptoms starting 7 years before that. My neuro has told me to be as active as possible, and to exercise for strength and balance at least an hour each day. I use a cane to prevent falls when I leave my home, although I'm able to walk (very carefully) in my home without it. I don't know where you're at physically and your ataxia was caused by strokes. My ataxia has progressed, and I don't know what the future holds, but do any of us? I prefer to live each day the best I can, as we don't know and the neuro's don't definitively know what our prognosis is! I prefer not to live with a self-fulling prophecy about all this. I hope you'll do the same! My best to you..., ;o)

7

I have been thinking all morning about your post. I admire your courage and realism.
But something does not add up here. Or Iam missing something.
If your ataxia was caused by a stroke, it should not be progressive. In your case, your progressive muscle weakness should be caused by the fact that you are wheelchair bound and probably cannot get much exercise. Anyone who is not moving enough will eventually have atrophied muscles and therefore weakness. If you ever broke a leg or an arm, you probably noticed how skinny that limb has became after a few weeks in a cast. That is because the muscle has not moved for that period of time.

Does that make sense? Have you ever had genetic testing done?
I am not a doctor, so do not take my word for granted. I am just trying to use my common sense. I think I have a little left. The stroke did not take that away. :wink:

My ataxia has not progressed, but I am certainly weaker than I was before the stroke. It is a terrible vicious circle to be caught into. Too weak to exercise enough to regain strength which would help us exercise more…

My best wishes to you, Sid. You are a strong man and will probably prove all your doctors wrong, All 36 of them :slight_smile:

8

There is no dignity in progressive ataxia either as I have found out.I think the mental anguish of this disease is the worst.

9

I agree Marie! If we only shut our mind off once in a while, and give ourself a break from thinking about it! It's exhausting! ;o)

10

Hi ALL,

I'm sincerely touched by your replies. I thank each one of you for the outstanding feedback. There a few questions asked that I might be able to qualify with this reply. With that in mind, let me "Cut to the chase" method to avoid any irrelevant narrative.

STATUS

Based on your input and and a recent event, I'm going to continue as before and do everything I can to maintain my acceptable quality of life. I'm trading in my speculation mindset for a "Let it be" (thanks Paul) mindset. I'm livin the good life one day at a time.


Background

Hooray! Number 7 must be my lucky number. Imagine, a "Neuro" who actually knows what Ataxia is and confirmed all of my speculation to date. Good listener, attentive to all my gibberish and clearly observed my inability to utter a word periodically. Definitely will use this guy to the "end".

To make a complete picture of my current condition in order to evaluate and make a WAG, aka, Wild-Assed Guess, of my life expectancy, he scheduled 4 MRI's to update 3-yr-old data. One MRI for the brain and 3 for my spine (takes 3 to capture full spine). While I'm a bit claustrophobic and subject to panic attacks, I'm not concerned about the closed tube since I've been in and out of various types of tubes every-time I seek out a Neuro who will specify a diagnosis other than a "Cerebellar disorder".

LOL, when Wifey called to make an appointment, the nurse was in shock that she was scheduling for one day--Nurse: "Let's try not to kill the guy prematurely". We're now set for 2 days, 2 MRI's each.

Honestly, I was very surprised this guy had Ataxia in his curriculum--BUT, he is the youngest of the previous 6, graduating from the Mount Sinai School of Neurology in 2002.

I'm totally cool! I'm actually happier now that a professional seems to really understand the pain and anguish of the "disorder" and the repercussions of the progressive downward spiral.

Some answers to previous replies:

By reviewing my history, the new guy traced the inception of the disease to the Psychotic Break I had in 2000. I was partially paralyzed on my right side for almost a year and spent some time in an experimental program in a NYC hospital. It took 2 years to create a drug cocktail that maintained stability. OK, that makes it 13 yrs.

When I suffered the "minor stroke" 7 yrs. ago and could not walk a straight line with nerve damage in my right leg, I ran to a Personal Trainer for help, NOT a Physical Therapist. My thinking was to build muscle around the dead nerves--it worked and I could still get around with a cane. When another minor stroke hit in Dec of '09, it resulted in Cervical Arthritis. Everything I gained in strength and endurance reversed dramatically. My answer to recovery was to go from a 4-day workout to a 7-day workout, including balance exercises.

May all of you keep truckin along--With Love, and a hug:



SID


11

Good for you Sid! With your attitude, I bet you will outlive all your doctors. Well, maybe not the youngest one…

A big hug to you too and my very best wishes. We are all in the same boat. Let’s keep rowing together, combat’s speed …
Take care!

12

What a positive outlook you have, Sid! You are truly an inspiration to all...,kudos! My best to you...,;o)

13

Sid, you are my hero, keep on posting! xB

14

Excellent outlook and truly inspirational. You’ve made a very sad day for me a lot brighter, thank you Sid. Love and best wishes.xx

15

What are the known progresssive indicators.I realise there is something wrong with my thinking and want to develop a more positive outlook on this disease.Any hints about being more positive.At the moment I feel negative like you did as there are so few who understand the psychology of a very fast and progressive diseaase.Unlike others it is very nebulous and we don't know where the end is;it is not finite so we don't know where we are.I must alter my thinking.Help Sid etc. How do you do it?

16

Hi Marie,

Sorry for not replying sooner. As I understand it, some of the progression indicators are relatively simple, others may be more subtle. Minor strokes that impact nerve functions like tremors--progression of tremors to a very heightened state is an indicator--very frustrating when you can't get a soup spoon to your mouth. Speech difficulty when you can't remember the next word and can't go on or difficulty speaking without stuttering. Most common is dysphagia (difficulty swallowing)--whereby drinking water is not blocked by your windpipe and enters the lungs which is a concern for pneumonia--Swallow therapy is a good way of controlling the water that is diverted to the lungs--I had 18 therapy sessions, but it was determined that further therapy would not improve the condition any further--the key to this battle is that you must drink Honey Consistency beverages, now conveniently packaged in small cups and bottles of flavorful juices (Apple, Cranberry)--AND you must eat differently...very small bites, masticated to the point where you will end up doing what I did...change food intake to soft foods like Yogurt and liquid nutritional drinks like Ensure--but you still must add a thickening powder (YUK, even in your coffee). Probably, the worst progressive indicator is a type of seizure, whereby your body is so cold and you experience rigidity and wild-assed shaking and lose consciousness (in my case, 3 hours on the floor and no one nearby). I sincerely hope that I have not frightened you, but the real-world sucks in our condition. In each and every situation, I simply put it on the shelf and move on, and I don't dwell on it.

It is possible (I hope) that you will pass through the progression without repercussions. I was reluctant to be detailed in my saga, but I wanted to give you honesty. As it turns out, I made it through every progressive rung on the ladder and I'm happier than a pig in you know what.

With love, hope and and empathy,

Sid



Marie Turner said:

What are the known progresssive indicators.I realise there is something wrong with my thinking and want to develop a more positive outlook on this disease.Any hints about being more positive.At the moment I feel negative like you did as there are so few who understand the psychology of a very fast and progressive diseaase.Unlike others it is very nebulous and we don't know where the end is;it is not finite so we don't know where we are.I must alter my thinking.Help Sid etc. How do you do it?

17

Hi Marie, Ataxia is extremely frustrating and challenging! The way I think positively is with my sense of control. For example: There is nothing in life that we truly have control over. Therefore, seeing how I have no control over having ataxia, I do have control over my attitude about it. I chose a positive attitude! Don't get me wrong, at times I do have mini-pity parties and feel sad about this. But they are short lived, as I focus on all the blessings in my life, as well as what I can do, rather than what I can't. I try to live the best I can each day, and although difficult, I try not to think about the future. There was a time when I really struggled with this, so I talked with a therapist. That helped give me the peace and acceptance I was seeking! I won't give up or give in though! I just realize I can either be miserable or not! I chose not, and it's refreshing! Hope this helps a bit..., ;o)

18

Rose darlin,

GREAT advice..Thanks

In your post, the operative word is Acceptance. On the other end of the spectrum is Denial. Yep, I'm using AA talk--the first and most important step is Acceptance that you are powerless over our condition. Almost 34 yrs ago I embraced Acceptance and life became much simpler.

Sid

rose said:

Hi Marie, Ataxia is extremely frustrating and challenging! The way I think positively is with my sense of control. For example: There is nothing in life that we truly have control over. Therefore, seeing how I have no control over having ataxia, I do have control over my attitude about it. I chose a positive attitude! Don't get me wrong, at times I do have mini-pity parties and feel sad about this. But they are short lived, as I focus on all the blessings in my life, as well as what I can do, rather than what I can't. I try to live the best I can each day, and although difficult, I try not to think about the future. There was a time when I really struggled with this, so I talked with a therapist. That helped give me the peace and acceptance I was seeking! I won't give up or give in though! I just realize I can either be miserable or not! I chose not, and it's refreshing! Hope this helps a bit..., ;o)

19

Hello Rose and Sid

Thanks for your advice.

I think what worries me is if my stress makes things worse.I have had depreession and also spent 10 years in AA.

I had good couselling from AA..I am worried the Neurologists will get fed up with me and tell me not to be stressed.

I cannot walk without some sort of aid,I struggle with speech and writing and have intention tremors and cannot look after myself as should anymore.I am not angry or cross with anyone just frustrated with myself.

I am not very good at accepting.I know Step 1 and quote it at others.But I did accept alcoholism and depression and fought my way out of both with a lot of help.

I have not had seizures tiredness or swallowing difficulties and no pain certainly no cognitive problems.

I think your psychology is right Sid and Rose.I think some one t o one counselling would be best as I need tailored counselling.I would like to feel that sense of peace that you both obviously feel. At the moment I feel stuck in a bereavement cycle.I would like to get out of this or through it as you have done.I do not want a reputation of being an old misery.People outside think I am positive yet my family see a different side.I do not want to be negative and am happy to accept advice and guidance from others with a progressive condition.

20

Marie,

Don't think for a moment that we have embraced our destiny or have blocked out uncertainty. I certainly think about it each day--I have just learned that I have reached the final stage--muscle atrophy and weakness.

My drive right now is to spend as much time with family and close friends.

Stress: OMG, if you felt little stress I'd be shocked. I have suffered from chemical depression and acute anxiety since my first Psychotic Break in 1990. My med cocktail includes Zoloft for depression and Xanax for anxiety. The rest of the cocktail is to put me through 2 cycles of sleep. I'm not in any way saying that this be your course of action. It simply worked like a charm for me.

As you know, we alcoholics (perpetually in recovery) are banned from taking highly addictive mood stabilizers (especially Xanax). What I did was seek out a Psychiatrist who specialized in addiction. It was he who put Xanax in my regimen--I was already sober 20 years, but he monitored me carefully nonetheless until he observed that Xanax had absolutely no effect (like a "high") on my mood--all it did was neutralize the runaway train of anxiety.

My strongest recommendation is that you seek the help of a Psychiatrist for both therapy and his/her assessment of taking meds. Think about it...wouldn't every member of our group be on line to get an Ataxia inhibitor (hand raised and waving)??

Based on your description of your current condition, that is, walking aids, speech impairment, no cognitive issues and happily, NO pain, I'm becoming envious. But gaining knowledge of your disease and the big possibility you will reach plateaus of peace is, in my opinion, a blessing in disguise.