I came out of the Huntington's Disease closet when I went on SSI disability, more than a year ago. Since then, I have been using my "work days," or days when I used to work, to exercise my body and my brain to fitness, with the hope of delaying the onset of symptoms of HD. In fact, I have accepted this new use of my time and energy like it's my job, because that's what it has become - my occupation and my daily grind.
Besides exercising physically and mentally, I spend quite a bit of time (and money) in the purchasing and consumption of nutritional supplements. Maintaining a higher body weight seems to help, as well as these supplements that I take each day:
A few months ago, I put a website together for myself (like it was my job!) It is my hope to attract a few piano and voice pupils, since I have always been a music teacher. Using some you-tube videos that I made from old family movies, I included some samples of my work over the years. I asked family members for input on the site, and it looks pretty good now. I then invited a few former students and colleagues to write a recommendation, and some were kind enough to do it.
The somber truth is, though, that the people I asked for a testimonial all know that I am on disability for Huntington's Disease. Most of them have not seen me for a long time, and are probably afraid to put their name on a recommendation, for fear that I am already symptomatic.
By the same token, any prospective students might have the same issue. What if they fear that I am already deep in the mental and physical decline that happens with advanced Huntington's Disease?
Bring on the self-doubt!
Besides exercising physically and mentally, I spend quite a bit of time (and money) in the purchasing and consumption of nutritional supplements. Maintaining a higher body weight seems to help, as well as these supplements that I take each day:
Con-cret Creatine - Very easy to take, one capsule a day
Blueberry IQ - Two capsules daily
(equals 1 cup wild blueberries)
(equals 1 cup wild blueberries)
Ubiquinol Concentrated CoQ10 -
One 100 mg capsule daily
One 100 mg capsule daily
Omega 3 Fish Oil - One 500 mg capsule daily
Trehalose - Two tablespoons daily
Turmeric Extract - One 300 mg capsule daily
Vitamin E - One 400 mg daily
Citalopram Antidepressant - One 20 mg tablet daily
What about my part-time employment, working with Alzheimer's patients? Well, in anticipation of getting rid of me entirely, when I lose track of just one more person, they have hired someone to take my place, and I only work one day a week -- Sundays, of course, since no one else wants to do it! Before I lose this position completely, I hope to solicit a few new music students via my new website
A few months ago, I put a website together for myself (like it was my job!) It is my hope to attract a few piano and voice pupils, since I have always been a music teacher. Using some you-tube videos that I made from old family movies, I included some samples of my work over the years. I asked family members for input on the site, and it looks pretty good now. I then invited a few former students and colleagues to write a recommendation, and some were kind enough to do it.
The somber truth is, though, that the people I asked for a testimonial all know that I am on disability for Huntington's Disease. Most of them have not seen me for a long time, and are probably afraid to put their name on a recommendation, for fear that I am already symptomatic.
By the same token, any prospective students might have the same issue. What if they fear that I am already deep in the mental and physical decline that happens with advanced Huntington's Disease?
Bring on the self-doubt!
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