Taking Supplements on the Sly

 

The fact that a few of the above supplements have been removed from our recommended list just makes me want to continue, as a renegade rabble-rouser!

Sadly, recent studies have shown that Creatine and Ubiquinol/CoQ10 didn't make enough difference to enough people to make them worth recommending. For me and most other presymptomatic people, we will continue to follow the things that have been successful for us! We will maintain our daily ingestion of a variety of pills, capsules, and liquids! We've been doing it for a long time, and they seem to have been working!

Here is a list of the supplements that I currently take - 

(as they say, “Can’t hurt, might help”):

Con-cret Creatine - Very easy to take, one capsule a day
Blueberry IQ - Two capsules daily (equals 1 cup wild blueberries)
Ubiquinol Concentrated CoQ10 - 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 Antidepresant - One 20 mg tablet daily

I encourage my readers to continue taking the things that have helped you in your conquest of Huntington's Disease!

What Do We Do Now?

For me, and for many other Phd’s (People with Huntington’s Disease), the recent news of upcoming gene silencing trials has brought more questions and quite a bit of concern. For the first time, I am without a clinical trial! All of the ones in which I participated are over, and there are no new ones to take their place! I really did enjoy participating in the trials that I was able to do, and the folks who were running them really did make me feel like “queen for a day!” When the gene silencing trials finally start, it will be in Canada and Europe, not the good old USA!

I really enjoy reading Marsha Miller’s advice on the HDLF forum, where she was asked a similar question, “What do we do now?” In response to that question, Marsha wrote:

     In short, this just might be the beginning of the end but we are not there yet and clinical trials take years. We need to make sure that we in the HD community stay as healthy as possible, eating well, exercising our bodies and brains, and avoiding stress so that we can be ready for the treatments in the works. This applies to those at risk and HD patients but also to caregivers because we are going to need to be at our best to advocate.
     And for those who at risk and who have tested positive, don't let HD rob you of your hope and joy in life. If you allow the prospect of getting the disease in the future to stop you from achieving your dreams and being happy now, think of how sorry you will be if the future brings the cure instead.

As always, Marsha's advice is so well-written, and full of positive energy! So, I'll try to follow her suggestions, keeping as upbeat as possible. And waiting for the next step...

Too Soon to Be Disabled

A year and a half ago, I suffered the loss of a job that plunged me into applying for disability at a time when I didn’t quite feel disabled. With the knowledge that I would have to someday apply for disability, I had done lots of research. The thing that I was most afraid of completing was the Function Report form that Phil Hardt wrote about, where he stressed how we must make ourselves sound totally incapable of handling the ADL’s (Activities of Daily Living). When I applied for disability, I was never asked to complete any type of questionnaire like that. 

After speaking with the social worker at our Center of Excellence, I did complete one of those types of forms (which was supplied by the social worker, not the SSI Administration), and I had my daughter do one too. I sent it separately, after the initial on-line application. I thought that the swiftness of the Social Security Administration's decision was based on the fact that Adult Onset Huntington’s Disease had just become a Compassionate Allowance Disease, but it could have helped that I sent the follow-up form. I also wrote a blog about it at that time, Applying for Disability – the New Time Frame.

I have often thought that perhaps I applied for disability too soon, since I really don’t have any physical symptoms. But, just when I started to feel all full of confidence and good brain health, something bad happened! Last week, I lost track of someone who was in my charge at work, and I’m on the verge of losing that part-time job. Being on disability, I am only allowed to work fifteen hours a week, and the employer has been supportive to this point. But, now that they know that I might be having problems counting people, my days there may be numbered.

And I still have a year to wait until Medicare kicks in. So, I guess I didn't apply too soon.

My father, a white collar employee, worked for a big company for many years. He retired early, long before showing any symptoms of Huntington's Disease that were obvious to us. But, later some of his former coworkers told us that the job was becoming too difficult for him. He held a grudge against those who had expressed their concern for a very long time! I sometimes feel that way, too.

The Family that Bursts into Song

A few months ago, I mentioned that my father would frequently burst into song, often singing the bass line of some of his favorite choir pieces at wonderfully inappropriate times. After spending a week with my two brothers and their families, I can honestly say that we all do it! I’m so proud that my brothers and their wives have made music a priority for their kids! They all know how to read music (or are learning), have beautiful, pure voices, and aren’t afraid to try something new. Here is our latest (and only) recording, where we out-do the famed Von Trapp Family Singers (in my opinion).

When my older younger brother and I were children, it was our Grandma Ellen who inspired us to learn piano. She gave us her piano and paid for our lessons. In return, she asked that we perform occasionally for her church or her Rebekah’s Lodge. From piano, we both graduated to playing in band and singing in chorus, and I ended up majoring in music. We have both sung in choirs our whole life. My brother and his wife have sung in many types of mixed voice ensembles, including barbershop and Sweet Adelines. One of the wonderful things about my brother marrying his wife was that the family finally had an alto!

Folk music is really their forte, and our nieces are both dulcimer players. A lot of talent and patience is required, because it is difficult to keep them tuned, and lug them from place to place. We went to a folk music festival with them, and my brother brought his harmonica along in case he got inspired to "jam."

Recent research has shown that participating in musical endeavors helps those with dementia, including Alzheimer’s Disease and Huntington’s Disease. In our family, it keeps us happy and upbeat, and I think it is helping our minds stay pure and our spirits strong.