Al’s Ataxia Blog

December 2, 2008

December 2nd, 2008

The blog really has two purposes.  One is to keep family and friends informed as to what is going on and the other is to allow people with similar conditions to see what it is like to go through the stemcell program and to keep expectations realistic.  Having said  that I would like to describe my symptoms for late onset ideopathic cerebellar ataxia.  I’m a 67 yr. old male, an artist, in otherwise good health and realizing that each person is different,  here are my symptoms:

The condition was first noticed when my golf swing deteriorated 5 years ago.  Next I was bumping into things and felt like I was going to fall over while walking.

Constant dizziness- what I mean by dizziness is akin to spinning someone around with their eyes closed and then opening your eyes and trying to walk.

Equilibrium – when the center of gravity shifts, one has a sense that they are leaning over too far and correct for it.  I don’t get that sensation that I’m too far over.

Gait – during a normal step, some muscles contract and some release making a step smooth and balanced.  I’m sensing that not all muscles are receiving signals from the brain in a proper manner.  Therefore, walking is more work than it should be.

Fatigue – constant fatigue even after a good night’s sleep.  Sleep is very important to ataxia patients because when one is tired, all symptoms are exaggerated or get worse.

Speech – my speech started to go within the last year.  (About year four into the condition.) It takes more effort to pronounce words, voice is weak and slurring of words.  I feel a tightness in the throat which raises the pitch of my voice and an excess of saliva when I talk.  This also appears to be common among ataxia patients.

Emotion – emotionally I am pretty good – no depression.  However in the past year or so I’ve noticed a tendency to respond emotionally-like crying.  The feeling occurs rapidly and then dissipates rapidly.  For me this is unusual since I am not an overly emotional person.  This phenomenon seems to be common to a number of ataxia patients.

Jumping – I have lost all ability to leap forward or jump in a coordinated manner.  This also is common to many ataxia patients.

Acid Reflux- I have experienced mild acid reflux this past year.  After hearing some other ataxia patients have a similar problem, I think this is a common symptom.

Libido – started to disappear five years ago which I interpreted as age-related but may also be a symptom of the ataxia.  Don’t know if this is a common symptom.  Most people are reluctant to discuss this.

Spatial judgment-I found myself while driving, I would stop and brake much before the end of the street or stop sign.  I also misjudged placing objects on shelves, many times having the object fall off the shelf because it was too close to the edge.

Fine Motor Skills- handwriting is illegible.  I used to be good typist but now I find myself missing the keys and hitting the wrong keys.  However, I can still can paint.

Muscle Weakness- It was just a few years ago when  I could rise up from a sitting position on the floor without using my hands.  Now I cannot do it.

Symptoms I don’t have include swallowing difficulties, double vision and muscle pain.

There is help for those who have been told they have no other options.  I hope this helps. – Al

Our next door neighbors are a Romanian couple – a woman with advanced MS and her daughter-in-law who is her caregiver.  All of the interpreters only speak Chinese and English which is quite a problem.  The daughter-in-law speaks French so Al was asked to help communicate with them.  He hasn’t spoken French in 40 years but it is coming back enough to help them out.  When the interpreters  are in a real pinch, they actually call someone in Romania to help with very technical material.  So many stories- Joanne

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