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.