You just keep going!
Your life with Spinocerebellar Ataxia is affected by one of worst kinds of handicaps you could ever have. It took away all my dreams and desire to go on – in the prime of my powers. And everyone says that it is incurable. But someway you find the courage and determination to make the most of the life you are dealt with. At least I had someone on my side who understood what I was going through. And most of all they knew how to deal with me in this situation.
Advocacy was an answer to the horrible lifestyle I was forced to live and forced my partner to deal with. My website gave me a chance to put a spotlight on the many ways people can be made aware of the disease and participate in the solution of finding treatments and a possible cure.
At age 36 I was diagnosed with Ataxia. All associations with singing, golf, independence and self confidence came to an end. Over the years the medical profession, charities and attempts to inspire people to become actively engaged in the neurological movement disorders were dwindling away from me. The longer the progression continued my confidence that mainstream medicine would have an answer to the Ataxia problem was being chipped away. Here I was , a 3’d generation Ataxian – and still no solution!
There had to be a solution. Everything was pointing to gene therapy. Once again Ataxia and movement neurological disorders were finding HOPE! All my attention was focused on finding a gene therapy solution. Hopefully now at 72 years old I can find more people to hop on this train I call hope!
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Oh ! To be Rare but Remarkable in 2025
5 Big Lifestyle changes control my SCA progression
The greatest gift I could give to this miserable condition of hereditary Spinocerebellar Ataxia are lifestyle changes. This definitely slowed down the progression of the disease.
1)Climate location –
moving from cold, wet, slippery Germany to the dry, warm , sunny conditions of southern Spain definitely helped my mobility
2)Sleep –
in Germany due to my theatre work lifestyle I was only getting 6 hours of sleep. Now in Spain I’m getting 8-10 hours sleep. I am always in bed by 10:00 pm and don’t get up the next day before 7:00 am .
3)Diet –
changing from the sauce covered portions of noodles, spätzle and knodel in the German diet versus the lighter Mediterranean diet of Spain has benefited me during my more than 20 years living there.
4)Stress-
The work stress and the continuous level of production excellence involved in theatre life in Germany played a huge factor of my overall health. Since the discovery and progression of hereditary Spinocerebellar Ataxia made my lifestyle significantly more sedentary and immobile.
5)Emotional happiness –
After many years of emotional instability in Germany my life now has found peace in Spain. Finding the right caregiver/partner has comforted and calmed my situation.
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Rare and remarkable – employment!
In most people with Ataxia the ability to still be a part of the workforce is a great part of their personal identity. Depending on the severity of the disease type and the stage of the disease – Ataxia should not be a reason for not achieving gainful employment.
You might be slowed up a bit – but the brains still function! Your personal situation and the understanding and knowledge of employers , help people with different stages of the disease. Employment can be empowering to an Ataxia patient. Not to mention the ability to raise awareness while on the job ! At some point it may all stop !
I was very fortunate to have an employer who was willing to “ go with the flow “ and both parties had to be flexible to change. To have a total understanding of the disease was a rare but remarkable thing ! The progression of your Ataxia will determine your abilities. Stay in the game until you have to get out !
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Pick and choose your battles !
There are times in life when you need to decide what is important and what is not ! Ataxia makes everything that also comes your way small by comparison. Decide to help Ataxia research and become an advocate for a cause you can really relate to.
Get all your friends and family and your contacts to stand beside you and “ put their money where their mouths are “ . They can all be supporters of a funding cause they can all get behind.
Being an advocate for Ataxia makes you Rare and Remarkable!
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Ataxia in the twilight stage of the progression
Ataxia in the twilight stage of the progression , requires a caregiver that can deal with the harsh realities of every day living. It is not an easy thing to experience someone losing their function capacity.
The degree to which someone looses control over their mobility, bowles, speech, dexterity, mood swings and swallowing abilities is hard to watch and deal with. Unfortunately late stage Ataxia puts the patient in such a position. But having to deal with all this is beyond depressing – especially if the caregiver is a family member you know and love.
Great understanding, comfort and having knowledge of this condition predicament needs a very special person. It’s a 24/7 job! But there are great websites available to help you cope. Visit website: miracle-answer.org. It is a great information hub for all thing’s having to do with Ataxia.
Being a caregiver for someone with late stage Ataxia makes you Rare and Remarkable!
Thank you to all those people who help people with late stage Ataxia. Without a cure you caregivers are our last line of defence.