My Brain Basket

The subject of taking supplements has often been hidden, avoided, and otherwise covered-up by many in the medical community.  From what I've heard, many doctors are afraid to recommend anything that either haven't been tested, or are not traditional medications.  This has been going on for many years!  The idea of taking supplements in the pre-symptomatic stages has always been of interest to a hopeful HD population, but professionals are reluctant to mention them, or prescribe doses.  Here is an excerpt from my entry in the Huntington's Disease Lighthouse Families nine years ago! (September, 2004):

Hi! I'm new to this board; at least, this is the first time I participated. I will be 50 soon, and just tested positive, with a CAG count of 42. I'm not symptomatic, according to the neurologist. Ever since I found out the results, in July, I have been taking 10 grams of creatine daily, and 2 grams of EPA fish oil. I've done some reading on both, and I think I'm doing the right thing. Since I'm taking a large dose of creatine, I am trying hard to exercise almost every day. I ride my bike 10 miles, and I have noticed that my bike riding muscles are really getting strong! I am a professional singer and music teacher, and my usual busy fall schedule of singing and teaching will be starting soon, and I just want to ask: has creatine had any kind of effect on anyone's voice? I know the vocal folds are controlled by the muscles in the larynx, and I am wondering if anyone has noticed any kind of change of vocal range or clarity? Thanks for your thoughts!

When I wrote that entry, I really had no idea if I was taking the correct amounts of fish oil or creatine, since it is usually used by body builders, in large doses, to build muscles.  Since I was "in the closet" at that time, I couldn't tell any other doctor what I was taking, and why.  Over the years, and mostly through my association with HDLF forum and my involvement in clinical studies, I have settled on a group of supplements, that I have labeled "My Brain Basket."  I take the following every morning:

1.   Creatine - 2 tsp. daily - I buy mine from The Vitamin Shoppe, because there is one nearby. Buy Micronized Creatine Monohydrate. Mix with water, trehalose, and chug down.

2. Trehalose (Neurocoat) - 4-5 tsp. daily - I buy from Brooklyn Premium online 

3.  Blueberry IQ (Fruit Fast) - 2 tablets daily (equal to one cup blueberries) - I buy from Brownwood Acres 

4.  CoQ10 - Recent studies show that you should be taking at least 1000 mg per day

5. Glucosamine 1500 mg - Chondroitin 1200 mg - 2 tablets daily - I buy mine from Costco, Kirkland brand

6. Vitamin E - 400 ATE - 1 tablet daily - I buy NatureMade at Jewel

7. Celexa Antidepressant (SSRI) - 20 mg - You need a prescription for this

8. Krill Oil (concentrated fish oil) -Recent studies show that you should be taking 2000 mg per day  - You can purchase it at PuritanPride.com

Applying for Disability - the New Time-Frame

As a singer, teacher, and church musician, it has always been my practice to have several part-time jobs, sometimes in addition to a full-time position. My husband is self-employed, and we have had no insurance since 2007, when I was released from my permanent teaching position. Unfortunately, it was also the year I lost my two most important singing jobs. During the next few years, I worked at a few part-time positions, including Columbia College, where I was on the adjunct faculty, a retirement home where I worked with Alzheimer's patients, and as a secretary in a church office. I hoped that one of those jobs would turn into a full-time position, with benefits, but that is not the way it worked out for us.

In February, 2013, I was suddenly and unexpectedly fired from the job in the church office, and I couldn't even collect unemployment. During this time, I tried my best to get job interviews, and I did get a couple. However I did not put on a very good show during the job interviews, and pretty much embarrassed myself. After a few weeks, where I continued to work on weekends and Mondays at the retirement home, I realized that it was time to apply for Social Security Disability. 

I sent a letter to my neurologist, telling about my job problems, and she invited me in to the office to start the process of applying for disability. During my appointment, we discussed my condition, and she wrote on my form: Judy should quit working and apply for disability. At this point, the social worker in her office became my "best friend," and was extremely helpful with information. Because HD had only recently become a Compassionate Allowance disease, no one I spoke with really knew what to expect. This is how it worked out for me:

• First, be sure to have at least two doctors, including your neurologist, who know that you have HD, and will vouch for the fact that you are applying for disability. I went to my family practice doctor about a year ago, and told her that I had HD, and was in a clinical study at that time. She also gave me a prescription for Celexa, which I was already taking through the study.

•  Secondly, fill out the online application found at:  My Social Security Home. Prior to 2012, everyone was told to follow the advice of Phil Hardt (who was a great advocate for people applying for disability). Now, after the Compassionate Allowance decision, some of Phil's information isn't applicable. But, while completing the online application, be sure to stress the devastating nature of HD (using the wording recommended by Phil Hardt), and that it is a Compassionate Allowance Disease.

• Next, Social Security will send you an email link to a more detailed application. Once again, this will mostly be information about your doctors, medications, etc. You won't have to answer any "function report" type questions, which were so stressed in the past. Make sure that you write "Adult Onset Huntington's Disease" and "Compassionate Allowance" as many times as you can. 

• After they have looked through your application, they will schedule a phone interview, letting you know either by phone call or email.

(Note: At this point, my application went the wrong way -- they scheduled an interview two months in the future. Since it is a Compassionate Allowance Disease, they should schedule the phone interview ASAP. If not, call them back as often as necessary, (daily!) to remind them of "Adult Onset Huntington's Disease" and "Compassionate Allowance." I left frequent messages, but it wasn't until I spoke with an actual agent that they gave me a good response. In Illinois, the office who handles Compassionate Allowance Diseases is in the Springfield office, so be sure to answer the phone if you get a call from a strange area code!)

• Once your application is in the correct office, at the state capital, they will contact the doctors that you listed. In just a few days, you should receive your phone call, from your local office, letting you know that you were granted disability. They will send a follow-up mailing via snail-mail, too. There is a five month waiting period for the first benefit check (for me it will be in December), but if you have financial need, they will ask you some questions about your cars, house, bank accounts, etc., to see if you qualify for extra financial help (SSI).

• If you are already employed part-time, you may be able to keep your job. I am still working 15 hours a week at the retirement home, where I work with Alzheimer's residents. Depending on your situation, you may be able to do it. Once again, my social worker was very helpful in getting me information about this. First, I revealed my status to my bosses at the retirement home, and asked that I not work more than 15 hours a week. I have to save my pay stubs from there, and submit them monthly to the Social Security Office, so they can make sure I don't go over the designated amount. My employers are very supportive, for the most part. 

Lord, keep me in the spirit of prayer

This summer, I had a very happy reunion with Jane, my best friend from my hometown, Morton. Besides being my dearest friend from school days, and the maid of honor in our wedding, she was also in the Chicago Symphony Chorus long before most of us. We had a great carpool reunion dinner here in Oak Park, as well as a wonderful visit, catching up with over 30 years of absence.  She presently lives in New York City, where she still uses her amazing voice to perform and teach. 

She and her parents were powerful witnesses to Jesus' love, and they were very patient and generous with me during our high school and college years.  Jane recently reminded me about the importance of prayer.  When we were in high school, we used to meet (in a practice room) to pray before school.  We had a little group of regular participants, and it really was an wonderful way to get through those difficult high school years.  We practiced "conversational prayer," where we took turns talking with God about whatever was on our hearts.

As an adult, I'm not really comfortable praying out loud, but I'd love to be able to relive the closeness that we felt both to God and to each other during those prayer sessions.

During the many stressful and demeaning situations that I have faced during the past few years, I often try to be in a constant state of prayer, starting with my first thoughts of the day, and continuing until I fall asleep at night. I thank God for helping me stay cheerful and peaceful in the face of difficult times.

Happy Birthday to You!

During the summer of 2004, I was feeling pretty confident that I probably had not inherited the HD gene from my father.  With several jobs to balance, including a full-time teaching position that I loved, and several singing gigs, I had faith in my own abilities and gifts.  The occasion of my daughter’s twenty-first birthday seemed like the perfect time to have the DNA test, so that I could share a clean genetic future with my family.  It was my intention to do it on my own, so that I could surprise my family with the good news.

Because I had already been following several HD-related online groups, I knew that it was important to “get our ducks in a row” before testing.  An insurance agent came to the school where I worked then. I purchased as much insurance as I could at the time, including long-term disability, an extra-large life insurance policy, and whatever the agent recommended.  It didn’t leave much in my paycheck, but I was planning on dropping most of the insurance when I tested negative for HD. 

 

I made an appointment with a neurologist at Rush, who was well-known in HD circles.  When I came alone, she and the psychologist who interviewed me were curious as to why I didn't bring a family member, as that is their protocol.  I said that I might just have the "results put on hold" for a while.  At the end of my appointment with them, they sent me to a genetic counselor to have my blood drawn.  After the appointment, for which I paid almost $2,000 in cash, I started planning the presentation I wanted to make at my daughter's birthday party…

Those were very busy days, and before I knew it, it was time for my results.  My job was close to Rush, so I planned on working before and after I got the word.  When I got there, the doctor and the psychologist greeted me, then said, "Last time you were here, you said you might like to put the results on hold.  Do you still feel that way?"  

Of course, I knew then that the answer was "positive" for HD. That knowledge really took my breath away for a while.  I did go back to work, but it was difficult that day.