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Bob Budack

My Ataxia Story

My name is Robert (Bob) Budack and this all began with me when I was about 15 years old (in about 1967).  I started having double vision occasionally. Since it was very sporadic at that time, I tried to ignore it as best I could. (Little did I know this was just a very mild pre-curser symptom of worse things to come.  However, there is no cure or even treatment, so it would not have mattered if I did know!)

I was able to get through and graduate High School and even earned a bachelor’s degree from a four-year university.  Then I got a full-time job with Washington State.  My symptoms kept progressing, but luckily at a very slow pace. (My double vision {and sometimes triple vision with periods of astigmatism} was worse and not really sporadic as it once was but was still manageable probably due to the fact that it had begun at such an early age and my body had adapted as best it could. Also, my muscle coordination and balance were starting to be affected, but both were very mild at that time.)

Finally, after working for 35 years, I decided to call it quits and planned on retiring from state work in 2011.  My overall symptoms were still not too bad.  In 2004 (about 7 years before I retired), I had an appointment with a neurologist to discuss my Epilepsy. I had it since I was 16 and the doctors were frequently monitoring me to ensure everything was OK.  This was a new neurologist, and he took one look at the astigmatism in my eyes, noticed my need to move my head back and forth to see clearly, and immediately ordered an MRI of my brain.

When the results came back, he showed the MRI to me and explained the diagnosis. He first showed me an MRI of a healthy Cerebellum. It showed the Cerebellum to be about the size of a full-grown erect walnut standing straight up.  My MRI showed a Cerebellum half the size of a walnut and laying on its side and slightly squished.  Apparently, all the time (since I was 15), he believed I had what was called Spinocerebellar Ataxia (SCA). According to the doctor, this is a genetic neurological condition that affects coordination, balance, some eye functions, speech at times, some breathing functions, and sometimes causes leg and walking issues, but this may be a part of the balance/coordination problem. He stated that it is progressive in different people (some get worse at an earlier age faster and others get worse later in life – even in the same families, like sisters/brothers and between people with the exact same illness) and he further said that I should consider myself somewhat fortunate (if you could really call it that) since I was able to complete public school, go to and graduate from a four-year University and earn a Bachelors of Arts degree in Business and Public Administration and work for 35 years.

The doctor was not an SCA expert and did not study this illness. However, he did impart a little knowledge that was useful but not really wanted at the time! (Except that it did give me an idea as to what I could expect.) He stated that SCA by itself is not usually fatal, but some of the side-effects can be in later life.  Breathing issues could often be problematic, and in later life, as the disease progressed, pneumonia was easier to catch and could be fatal in many cases. Also, with balance and coordination problems, falls could be much more prevalent and, therefore, riskier and possibly even fatal in certain situations.

However, I was now retired and everything changed. I don’t know if the slow progression I had previously experienced was due to my being active at work, but now I was only about 50% (or less) as active as before.  Therefore, my progression began to speed up – balance, coordination and leg/walking issues got steadily worse at a faster rate. 

The doctor tried to pin down the exact type of SCA (there are over 100 varieties with many sub-categories with symptoms slightly similar, but certain time periods were different {some are more prevalent and progress faster at younger ages, while others wait till later in life}. DNA Testing was required, and he took blood to perform the various tests. However, I was a member of Kaiser Permanente at the time, and they were unable to do the tests, so they were sent to the Univ. of Washington. SCA was a fairly new/rare disease and not all strains had even been identified yet, so the Univ. of WA could not identify it either).  The doctor also said that since he was not an expert in SCA, and since the DNA Testing was inconclusive, he could only make his best guess on the actual type of SCA I had.

I have now moved into my Second Senior Living Facility where most of my daily needs are met. (Weekly Housekeeping, three meals prepared and served daily, a shuttle run by the facility to get residents to medical appointments twice a week and to shopping once a week. My double/triple vision has not gotten worse (or better), but I can no longer walk more than 2 steps without a walker unless I hold on to walls, counters, furniture, grab bars, etc. However, my mind is still clear and according to the doctor SCA doesn’t really affect the mind and thinking. (Except self-consciously since I am personally aware that it is always there!)

I can no longer go outside for walks, but I do deliver weekly menus to all the rooms in the building and distribute periodic fliers about upcoming activities, so I am getting some walking (not real exercise, mind you, but still???) even though it is slow and sometimes halting and I have to stop and rest often. I play various card games and work jigsaw/crossword puzzles, so I’m keeping my mind engaged. I am still able to do easy household tasks like laundry and washing dishes (albeit slowly), I manage my own finances (including taxes, investments, bills, checking/credit cards, etc.) and I enjoy spending my evenings watching Hallmark movies, cop shows (NCIS, The Rookie, FBI, The Irrational, etc.), reading and watching some football on TV.

As long as my SCA doesn’t all of a sudden get a lot worse, hopefully I can live a somewhat passable existence (sic) and will have a fairly longish and half-way productive (??) life even though it is filled with many trials and some hopelessness.

One of my biggest concerns (wishes??) at the present time is as follows. All of the SCA specialists in the western WA area are in Seattle, WA or Bellevue, WA (I am in Tacoma, WA) over one hour away and I cannot get there to see them to either verify the diagnoses, get clarification on the exact type (including symptoms that may not have appeared yet), check for any treatments/research, or just try to keep up to date in general.

Also, I wonder at times, if it would really make any difference since there is no cure or treatment; thus, nothing to be gained!!!

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