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John Harnett - My Story
SPINO-CEREBELLAR DEGENERATION (SCA) – MY STORY
November 2004
Table of Contents
Foreward
Chapter
1. What is Spino-Cerebellar Degeneration/Ataxia
2. My young Adult Experiences
3. Neurological Evaluation/Doctors Diagnoses
4. Work/University
5. Applying for Disability Pension
6. Living with Ataxia
7. Exercise for Flexibility
8. Coping with Irritability
9. Walking with a Cane/Walking stick
10. Update from writing in Nov 2004 to 2009
FOREWARD
I was diagnosed as having Spino-cerebellar Ataxia/Degeneration but because there was no family history of this disease in my case it was labeled “sporadic”. The word “sporadic” does not tell us anything about the way in which the disorder is inherited. Most adult-onset Spino-cerebellar Ataxia/Degeneration is inherited in a dominant fashion, but certainty in my case is not possible. This has been a source of frustration for me and has motivated me to write this book and complete a family tree for both sides of my family.
Ataxia is a rare neurological disorder that can cause a total or partial loss of coordination. In very basic terms, the area of the brain that controls balance and coordination is the cerebellum. Spino-cerebellar Ataxia/Degeneration is characterized by progressive ataxia due to degeneration of the cerebellum, brainstem, spinal cord and peripheral nerves. The disorder commences with gait unsteadiness and is followed by upper extremity ataxia and dysarthria. The progression of the disorder is extremely variable and difficulty standing steadily and running progresses to the stage where walking is no longer possible in many instances. Other more severe symptoms associated with the disorder include foot deformity, scoliosis, cardiomyopathy, sensory effect, breathing, speaking and swallowing difficulties.
I was diagnosed with Spino-cerebellar Ataxia/Degeneration in about November 1995, at the age of 36 but in retrospect the symptoms probably started some years earlier. After I was diagnosed I searched unsuccessfully for a book that would give me some idea of what I could expect in the future. Frustrated with the lack of information I could find I decided to document my own situation. I am very fortunate that the severity of the disease is reasonably mild in my case and that I do not have a family of my own to support. The latter means that financially I have been able to survive well and my accommodation in a SA housing trust house has helped considerably. I have been blessed with a brother and four sisters and some close friends that have been of considerable help, but this can not make up for having a family of my own. I hope that by writing this book it might help anyone that has a disease similar to mine to see how it has affected me and to develop positive ways of coping with it.
CHAPTER 1.
WHAT IS SPINO-CEREBELLAR DEGENERATION/ATAXIA
Spino-cerebellar Degeneration or Ataxia (SCA) is a type of Hereditary Ataxia (HA) which is a debilitating disease for which there is currently no cure. Ataxia seems to be a word commonly used in the United States while Degeneneration is more common in Australia. SCA is a progressively degenerating neurological disorder related to Parkinson’s and Huntington’s diseases, these other disorders affect different parts of the brain. Spino-cerebellar Ataxia/Degeneration is characterized by a slow disappearance of nerve cells in the brain. Thankfully, this neurological degeneration began relatively late in my life, (first appearing in my 36th year) and continues to progress slowly.
This is a dominantly inherited genetic disorder, which means that only one of my parents needed to have the defective gene for me to have the disease. I have no known history of the disease and it is thought that any previous family members with it probably died before manifesting any symptoms. The other alternative is that it is truly ‘sporadic’ and I am the start of the disease and it is just an accident that I have a damaged gene and as I have no children the disease will die with me. The area of the brain affected by this disease is the cerebellum and is evolutionary one of the oldest parts of the brain. The cerebellum is a fist sized round mass located just below the main cerebral hemispheres, at the back of the skull, just behind the ears. It is mainly responsible for balance and coordination. It can give us perfect penmanship or the potential to move like Fred Astaire.
Projecting downward from the brain is the brain stem. Here are found some of the oldest, brain centers that control life sustaining processes such as; temperature regulation, respiratory rate, heart rate, blood pressure, etc. SCA sufferers have a characteristics of movement known as ataxia. This may be anything from a slightly observable clumsiness in walking, to varying degrees of stumbling, lurching, weaving and bobbing. In addition to this physical ataxia, there comes, what is called an emotional ataxia which comes with having an incurable disease.
In the beginning stages of the disease, the most noticeable symptoms were its physical limitations. For example, I experienced a slowly advancing loss of control over my balance and coordination. In general I found that I was becoming more clumsy and awkward. I began to bump into things and stumble on steps. I could no longer carry a cup of coffee, without spilling it.(or a glass of beer) At this time, the simple act of going for a walk became difficult. My body would no longer ‘go’ anywhere in a straight line. For the first time in my life, I had to think about walking and police my movements, making corrections whenever necessary.
I continue to research the medical literature for developments in treatment of my condition. To date, the most exciting things are research in the area of stem cell transplants in the treatment of neurodegenerative disorders such as Parkinson’s or Huntington’s diseases. One day our own stem cells might be harvested to avoid the bodies’ rejection of foreign tissue. While results are promising, it is far too early to assume this technique will be successful in human trials. Nevertheless, it is very comforting to know that breakthroughs are being made all the time in our understanding of the mechanisms behind these neurodegenerative disorders.
CHAPTER 2.
MY YOUNG ADULT EXPERIENCES
The onset of ataxia symptoms may well have occurred during my mid-twenties, although technically I was not medically diagnosed until the age of about 36. Looking back to my childhood and teenage years, I was reasonably average at most things, not excelling scholastically and while I enjoyed participating in most sports I would not describe myself as being good at any of them. My earliest memories of any hint of this disorder are of clumsily clipping ankles in the action of running while playing sport. Although I was quite a good footballer a lot of this can be attributed to me being tall. In retrospect I was somewhat awkward and while I played football, basketball and water polo, I was not particularly good at them. My younger memories particularly my teens and twenties are all good but I do recall having knee problems in my late twenties that with the benefit of hindsight may well have been related to SCA.
CHAPTER 3.
NEUROLOGICAL EVALUATION/DOCTORS DIAGNOSIS
What started out as a normal Friday night session of drinking at the pub with friends and a close mate who had recently returned to Adelaide after a couple of years interstate. This particular friend noticed and suggested that I appeared more wobbly than I had in the past after a night on the ‘booze’. He made comment that I had always held my drink better and suggested that something might be wrong, and this started me thinking. I had previous knee problems and had always put increasing balance problems to my knees. I had four minor knee operations (two on each knee) which I thought would prolong my football career.
Anyway my first step was to see the General Practitioner who referred me on to see a Neurologist. After seeing a number of Neurologists I saw one that was very thorough and his investigations meant having numerous blood tests, an EEG (electroencephalogram, which records the electrical activity of the brain, sometimes referred to as a brain wave test) and a VER (visual evoked response). I also had a CAT scan; a MRI scans of both the spinal cord and the brain. All these tests took about 18 months and I was finally diagnosed as having Spino-cerebellar Ataxia/Degeneration in late 1996. My Neurologist had referred me to his partner in his practice for a second opinion and this confirmed his diagnosis. After my evaluation, the review by the Neurologist included tests of my reflexes, strength test by pushing down on my arms; walking heel-to-toe (sometimes with my eyes closed); nose to finger exercise (a test of repetition with increasing speed); taking the heel of my right and sliding it down my left leg, and repeating the same exercise on the opposite leg. All these tests checked my coordination and strength in my arms and legs. Each visit to the Neurologist ended with “You appear to be handling the situation well. As there isn’t a cure I will see you again in another 6- 12 months” The phrase “there is no cure” always left me feeling a bit depressed and very negative about things. This always frustrated me and combined with the failure to make a more precise diagnosis left me with pessimistic thoughts after my visits, but I was very grateful that the speed of my degeneration had been slow. On the research front, my particular version of the disease was particularly rare which not only made it difficult to find others with it to see what I could expect. In addition, because no-one high profile like Muhammad Ali or
Michael J Fox had the disease, not a lot of research went into finding a cure.
My basic understanding is that there are about 12 (more are being found all the time) different SCA’S and I have been tested for all known forms of the disease and have returned normal results. This and the fact that no family history exists means that a more precise diagnoses was unable to be made.
CHAPTER 4.
WORK/UNIVERSITY
I consider myself reasonably well educated. In 1977/78 I left school after benefiting from 12 years at a private college and although I received very average marks I found a job in an accountancy firm. My position was office junior and I soon realised if I wanted to move forward I needed to study Accountancy. I did so part-time finishing in about 1988 which enabled me to join a number of different professional bodies. I climbed the work hierarchy and moved between a number of different accounting firms over my 22 years in the profession. My fields of expertise varied greatly but I mainly concentrated on taxation and auditing. When symptoms started to have an effect on my work, I decided to go back to study an area that interested me. I was told by my doctor that stress from my work probably influenced the pace of progression of the disease I had. When the symptoms started to become obvious I decided my health was my most important priority and stopped work. I decided to study full-time at Adelaide University for a Bachelor of International studies, this comprised Asian cultural studies, Asian management, Japanese Society and culture, International Economics, Politics, and Labour studies. I finished and graduated in December 2001. I consider myself a bit of a plodder not exactly slow but more thorough, I earned good results in my studies because I was willing to spend twice as long as the brighter students to learn the same thing.
CHAPTER 5.
APPLYING FOR DISABILITY PENSION
I was very fortunate with all the help I received from the Muscular Dystrophy Association and the Multiple Sclerosis Society who made me aware of my entitlements and what government forms I needed to be complete. My accountancy skills assisted greatly with all the forms and all my dealings with the Public Service. Most application forms included medical declarations by Doctors and my Neurologist. This was most important when I was a full-time student and meant applying for a Disability Support Pension (DSP), a Pensioner Education Supplement and a Mobility Allowance. The DSP was the base pension and the Pension Education Supplement was an extra allowance paid to students occupying full-time study. Mobility allowance is paid to those in receipt of DSP who are either working, volunteering, or studying more than eight hours per week, this allowance goes part of the way to compensation for the fact that you are unable to use normal public transport and had to maintain a car. These allowances and Pension enabled me to pay all my rent and expenses particularly while I studied. Fortunately I was able to supplement my income with tax agent duties tax preparation until 2004 when my tax agent license expired. My frugal living expenses combined with all the benefits of the pension and allowances and my savings and inheritance money has allowed me to live comfortably. All this together with the very reasonable rental paid to the SA Housing Trust has permitted my budget to remain fairly stable.
CHAPTER 6.
LIVING WITH SCA
I would like to have a dollar for every time I have been told to ‘concentrate on what I can do and not what I can’t’ - but it really is true.
So is the ‘move it or lose it’ saying.
It is for both of these reasons I have become almost obsessive with my daily exercise routine and remain convinced that my mobility has benefited from this approach. Experience of falling a number of times and losing my balance has meant always focusing on what I am doing at the moment and to avoid hurrying.
When I hurry I tend to get very nervous and it takes me twice as long to do anything. It is very hard to explain examples to someone who has never had trouble getting coins quickly out of their pocket at a shop when a line of people is behind you, only to drop all the coins on the floor. Another example is not being able to access a building because it has a flight of stairs in front of it, or a picture theatre. I have learned to make a mental note of things that I should avoid. For example, I tend to lose my balance whenever I walk and turn around in one motion. I have fallen or lost balance often when changing direction too quickly. This is a common problem for those with ataxia but is just taken for granted by those that don’t have this disorder. When I walk I have learnt to really concentrate on walking. If I want to turn around I make a complete stop and slowly make a complete turn. This may sound elementary, but focusing on the task at hand works for me. I am more likely to have an accident when I stop focusing on exactly what I am doing. Fatigue is another common symptom of ataxia. Fatigue can only be controlled by getting plenty of rest. Irritability and slurred speech are indications that I’m tired. I have discovered various ways of coping or living with ataxia that works for me and I have grouped them into various categories.
Personal Grooming
I am very fortunate to have found accommodation with a Housing Trust two bedroom house and the shower in the bathroom has been modified for me. This work was completed in conjunction with occupational therapists. I have three handicap bars placed in the bathroom two of which in the shower. One in the toilet, one at the back door and I have placed another five strategically around the house to grab so I avoid falling. I regularly bounce off walls in the passage way when I get up at night to visit the loo. If I am traveling or visiting interstate friends where there are no handicap bars in the shower I lean on the wall for support or if there is nothing else to hold onto, I simply wash up using the face bowl until I return home. I always sit down to put on my clothing, shoes or to do anything that requires balance.
Housekeeping
I would like to avoid housekeeping altogether but I can’t. I clean the house in moderation. I tend to clean a little and rest as much as I need to. Because I live alone if I do not do the vacuuming and dusting it does not get done. This can be a both positive and negative. Because I am essentially lazy, I do cleaning when it starts to show, not that the house gets dirty I believe in the approach of doing things as you go. I tend to do things of a morning when I feel energetic by the afternoon or night I am starting to get tired.
Entertaining
Because I get tired easily when preparing a big meal, I seldom cook to entertain. Anyone who knows me will vouch for my cooking and entertaining skills, so I can’t remember the last time I cooked at home for anyone else, usually I visit others, but who knows what the future hold !
Gardening
I planned ahead a few years ago and put in a very low maintenance garden and have had help with spreading mulch but I still get out and pull out the weeds when the weather conditions are nice and I just do things at a slower pace.
Other ways I have learned to cope with ataxia
The following list includes other things I do to cope with ataxia :
• To avoid spills I drink tea and coffee from a mug with a lid (I am not a big coffee drinker any way).
• I avoid walking on wet, slippery floors.
• I exercise regularly to maintain flexibility
• I avoid driving in peak hours and use my handicap sticker which allows me to park close to the building when shopping etc.
• I walk up and down steps very carefully.
• I try to take my time when standing or sitting up from either a lying or seated position.
• I try to avoid alcohol (but still manage a couple of light beers on special occasions)
CHAPTER 7.
EXERCISES FOR FLEXABILITY
It’s commonly known and recognized that regular exercise is beneficial to us all. It is especially beneficial to a person with Spino-cerebellar Ataxia/Degeneration who is likely to experience muscle weakness and the loss of coordination in their legs and arms, as well as the loss of flexibility in the joints. I also have had speech therapy and while I no longer go to sessions with a speech pathologist, I use the exercises I received every morning, I speak aloud and to a time limit so I know if my speech has deteriorated. For example each morning while I am doing my twenty minutes on the exercise bike I count to seventy and ensure I do so within a minute, I do this twice. This is difficult as I am usually out of breath from exercising. Taking deep breathes while performing each exercise is very important. When oxygen is inhaled it enters the bloodstream and flows throughout the body. The muscles are nourished through this inflow of oxygen. I also do volunteer work as an adult literacy tutor, and while it is not rocket science, it probably assists with my vocabulary and articulation. I am convinced that my exercising every morning is the main reason I remain still able to walk, and muscle strength has stopped me from falling a number of times. Principally, exercise improves my self esteem. I feel that I am helping to improve my mental health while reducing the risk of having serious medical problems such as heart disease, diabetes, high blood pressure and many other ailments. I exercise each morning while listening to the radio, which serves the dual purpose of keeping me informed and also stops the boredom of exercising for over an hour. Fatigue is one of several symptoms of ataxia. Exercise and rest energize my body. Because I feel tired every day mid afternoon, I often have a bit of a nap on the couch in front of the TV.
FACIAL STRETCH
Objective : To stretch the muscles in your face and to stimulate the muscles in the tongue.
• Open your mouth as wide as possible
• Move your jaw up and down, round and round
• Stick your tongue out as far as it will go
• Circle your tongue around your mouth
• Stretch your eyes open as wide as you can
• Relax
• Repeat this exercise as often as you like
(This exercise can be done almost anywhere and from a seated position)
HEAD TWIST
Objective : To relieve tension in your neck
• Twist your head to the right, looking over the right shoulder holding stretch for fifteen to twenty seconds
• Relax
• Repeat the same exercise on the left side and repeat the total exercise as often as you like
(This exercise can be done almost anywhere from a seated position)
OVER THE HEAD ARM STRETCH
Objective: A total body stretch
• Sit erect or stand tall
• Pull stomach in for back support
• Slowly raise both arms high above head and pretend you can touch the ceiling
• Hold stretch for fifteen to twenty seconds
• Slowly lower both arms
• Relax
• Repeat exercise three times
BOTH ARMS ROTATIONS
Objective: To gain arm strength
• Sit or erect or stand
• Pull stomach in for back support
• Stretch both arms out (shoulder height), and pretend you can touch the walls on either side of you
• Make small circles, then gradually increase the size of the circle with each rotation
• Relax
• Repeat exercise three times
HAND AND WRIST FLEX
Objective: To exercise both hands and wrist
• Hold both arms out, waist high
• Stretch fingers apart
• Close and open hands
• Flex wrist up and down
• Relax
• Repeat exercise as often as you like
WAIST TWIST
Objective: To exercise hips and back
• Lay down on floor (on back) - I do this on my bed
• Pull stomach in to support back
• Stretch both arms out on either side of body
• Pull both knees up to stomach
• Roll from side to side
• Repeat exercise ten to fifteen times
• Relax
CALVES, ANKLES AND TOES FLEX
Objective: To exercise the calves, ankles and toes
• Sit down
• Take shoes off
• Sit erect
• Pull stomach in to support lower back
• Pull both feet toward you, then point feet away from you
• Hold for ten to fifteen seconds
• Wiggle the toes; stretch toes apart; squeeze toes
• Flex ankles up and down
• Relax
• Repeat exercise three times
THIGH STRETCH
Objective : To stretch the Muscles the thigh muscles
• Lie down on floor (or bed)
• Hold stomach in for lower back support
• Roll over on left side
• Bend right leg backward and grab ankle
• Press foot toward buttock
• Hold for fifteen to twenty seconds
• Repeat exercise for left leg
• Relax
• Repeat exercise three times
STOMACH TO KNEE CRUNCH
Objective : To help flatten stomach
• Lie on back
• Pull stomach in to support lower back
• Raise knees to stomach
• Grab knees with both hands and press knees to stomach
• Hold stretch for fifteen to twenty seconds
• relax
• repeat exercise three times
LEG LIFTS
Objective: To strengthen the leg muscles
• Lie face up on the floor (or bed)
• Roll to the right side
• Take the outer leg (left) and slowly lift it as far as you can to the side
• Slowly lower the leg (do not touch the floor)
• Hold for ten to fifteen seconds
• Relax
• Repeat with right leg
• Repeat exercise three times
DOG EXERCISE
Objective : Improve balance
• Get down on all fours like a dog
• Raise one arm and hold for twenty seconds
• Repeat with other arm
• Stretch one leg out behind for twenty seconds
• Repeat other leg
• Stretch out right arm and left leg hold for twenty seconds
• Reverse and repeat
FOOT EXERCISES – (use a small Volleyball type ball - 6 inch)
Objective : To stretch and control the movements of your feet
• Sit with a ball under you foot and
• Run the ball forward and backward (contacting all parts of your foot)
• Run the ball side to side (watch your knee and hold it if necessary)
• Circle the ball under your foot - change direction
• Rest
• Repeat other leg
BALL EXERCISES (on a larger exercise ball)
Objective : Improve balance
• Sit on ball (I use it up against the lounge to stop it rolling)
• Gently move side to side, back and forward
• Side to side forward and back, circle
• Put arms on knees and then arms out to side
• Transfer weight to right, shift left foot in and out
• Transfer weight to left, shift right foot in and out
• Walk forward and back
• Lift left foot off the ground and hold
• Lift right foot off the ground and hold
I know I have included a lot of exercises above, but I do not necessarily do them all everyday. They are exercises that have been given to me by Physiotherapists and Speech Therapists that I have seen. I have a dual action exercise bike (with arms that move) and every morning I do about 20 minutes on it and then about 40 minutes of other strengthening and stretching exercises each morning. My regular routine includes some I have listed plus sit ups, arm curls with a set of 6 kg dumbbells. A lot of the stretching and ball exercises are done in front of the television so I do not find them mind-numbing and I certainly notice the benefits.
CHAPTER 8
COPING WITH IRRITABILITY
I sometimes get depressed with my life, especially when people ask me what I do with my time now that I do not work. To be perfectly honest, I do not have any trouble filling my days, my day starts early at say 7 am everyday, I exercise for about an hour, by the time I have had a shower, breakfast, shave etc it is 9.30am. Often if I have to go somewhere like shopping, I like to beat the rush so this means getting up earlier. I usually schedule my doctors, physio, dental, dermatologist, neurologist, appointment in the late morning but this is often not possible so my days are often filled with seeing various medical specialists. As I no longer work and my tax consulting business has ceased my spare time allows me to pursue my hobbies of writing this book and creating a family tree for both sides of my family. I also like to keep up to date with world current affairs, this often includes watching and taping a lot of television
documentaries and current affair program’s. Ten years ago I was not interested in Politics, but after completing my Bachelor of International Studies Degree at University, I am interested in both international and domestic events. Perhaps the current era has provided us with a lot more events of interest, particularly on a world stage. I have been told that it is very important to exercise both your mind and body and not to dwell too much on what might happen in the future. I also research various websites on the internet in relation to my condition and communicate with a number of email contacts.
The 1990’s, particularly the late 90’s, were pretty tough years for me making the transition from walking to walking stick and employment to full-time study and eventually not working at all. In retrospect I was generally upset and an angry person. When I look back at my emotional state at that time it was pretty plainly a combination of grief and self pity. When I finished University and realized that full-time work was no longer realistic, I did some volunteer work for the Muscular Dystrophy Association. This was a real eye opener for me and I was amazed with how people a lot more severely handicapped than me seemed genuinely really happy and well adjusted. I imagined what they must have gone through in their lives and compared it to the stuff I had been through in my bad years and saw it that I had no right to adopt a woe is me attitude. The more I look into my disease I realize how mild it is and how lucky I should consider myself not to be afflicted with something much more serious. I remember having a discussion with the executive director of the Muscular Dystrophy Association who has a condition similarly in severity to mine. He told me of a woman he new in a wheelchair who had said to him that she had felt sorry for him! Puzzled by this, he asked her why, and she explained that as his condition was degenerative (as is mine) and she had always been in a wheelchair and had never known anything different, but he had that adjustment to look forward to ? I like to think a bit more positively than just accepting this as inevitable for me.
When I think about it, Mum bore the brunt of a lot of my frustration. I really regret my irritability which led to many arguments with her, and while she listened with great empathy to all my problems, I always got the impression that she never really fully understood the technicalities of my diagnoses. All this has prompted me to write this so family and friends are a bit more aware.
CHAPTER 9.
WALKING WITH A CANE/WALKING STICK
It took some time to get over the stigma of using a cane in public, I remember being told by different family members that I should use it if it helped stop me from falling. If I fell as a result of not using it I would be dependant on others and as I live alone this would be a bit stupid. Rather than looking like I was “drunk or on drugs” walking down the street I started using it and now I unfortunately need it. I was once told another way of looking at it was that people would see that you had a genuine medical problem and get out of your way. It is true, often people will give way to you and are much more courteous and make allowance for you when they see you have a medical problem. I have noticed a different approach when being served in department stores and basically any sort of retail environment.
When I was still working I saw a young women waking down the hall with a cane. I introduced myself to her and explained that my doctors say I will need a cane one day. She was very nice and endured my clumsy but sincere questions. I asked her how or what she did to prepare her self to walk with a cane. She answered by telling me she has terminal cancer and was pregnant. She continued by saying she also has a bad back and that she wears a back brace and walks with a cane for support. I thanked her and graciously walked back to my office feeling very embarrassed. Suddenly, the concerns I had about the stigma of walking with a cane seemed insignificant.
CHAPTER 10.
UPDATE FROM DATE OF WRITING IN 2004 TO 2009
I am very fortunate that my deterioration has been slow in the last few years. I no longer drive a car and now travel by Gopher. I stopped driving not because I had to but basically because I lost confidence in driving (particularly at night) and just found that I was only driving once a week to go shopping or special occasions. I decided to sell my car and travel by Taxi or get lifts from family or friends. I have found it is a lot cheaper too ! Another reason was that I obtained a dog in September 2006 and walking him became a problem as the walking stick was a dangerous option. The Gopher is ideal and he loves it. The dog (Chad)is a Labrador – and is a companion dog who was specially trained by a Sydney based organization WWW.assistancedogs.org.au
A companion dog is placed with individuals who would benefit from the emotional and physical therapy of having a well trained pet, and would like the companionship of a dog, but cannot raise and train a dog of their own.
He performs all the normal commands you would expect from a very well trained dog plus many others.
I am not a fitness freak or Gym junkie but I am convinced and have been told that because of my exercise routine and attitude I have been able to still walk, although aided by a walking stick and sometimes a 4 wheeled walker.
I spend 30 minutes each morning on an exercise bike strengthening my leg muscles each morning followed by some exercises that I have learnt over the years. I see a Neuro-physio at least twice each year plus I have a yearly review with my Neurologist. I am determined to remain as mobile as I can for as long as I can so that I am able to take advantage of any advances in medication or ultimately a cure. My personal circumstances (the fact that I live alone) means that I am lucky in that I do what I want when I want (just a little slower these days) but at the same time I do have help. A now have a cleaner each fortnight plus a lot of help from family and friends.
Don’t let anyone tell you just because no cure exists for SCA you can’t do things to slow the progression.
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