Clinical Studies

 

Nine years ago, when I first learned that I had tested positive for Huntington's Disease, I was very interested in participating in clinical studies. At the time, I did quite a bit of research, and found several sites that are kept updated. The Huntington Study Group website always has updated information on trials that are presently enrolling, as well as the Clinical Trials.gov site. When you find a study that sounds like one for which you might be interested and qualified, click on the link that will show the study locations. At first, I didn't qualify for many studies, but that changed as time passed.

My first study was "Citalopram to Enhance Cognition in HD (CIT-HD)," which took me to the University of Iowa. I called the phone number given on the website, hoping to be accepted in the study. When I enrolled, the study had been going on for a while. This particular study required frequent visits, for which I was paid transportation and food expenses, as well as putting us up in a hotel in town. At the beginning and end of the study, they required an MRI, (which gave me claustrophobia), took many vials of blood and a urine sample each time I came, always checked blood pressure and weight. Each visit, they had the same computer exercises to do, as well as going through mental and motor exercises. After the study ended, I learned that I had taken citalopram, not the placebo. I have continued to take it since the study, and I feel that it helps my thinking and mood. As that study ended, I was asked to join the PREDICT-HD study (also at University of Iowa, and many other locations), which had already been going on for a few years.

PREDICT-HD  - For this study, only an annual visit is required. Each year, they take several vials of blood, a urine specimen, check my blood pressure and weight, and conduct oral and paper questionnaires. In addition, they check my walking and motor skills. For the past few years, they have done an MRI each time, but they always give me a great drug that makes it very enjoyable! They are also attempting to do a spinal tap, in order to start collecting spinal fluid from participants.  They weren't able to do one for me this past visit, but they did a PET scan instead. The PET scan shows a lot about the brain, including sections that are dwindling. 

Creatine Safety, Tolerability, & Efficacy in Huntington's Disease (CREST-E) - I'm excited to be starting the CREST-E study, which takes place in Chicago (and other locations), in December. I'll write more about my experiences there!

Enroll HD - One study that is recruiting right now, at lots of locations, is Enroll HD, which accepts everyone - whether they are HD positive or HD negative. If you are already participating in PREDICT-HD, as I am, your last visit to your study site should facilitate your "rolling into" Enroll HD.

Exercising to Fitness

We have been told that we should exercise to fitness in order to delay the onset of symptoms of Huntington's Disease. While this is good advice, "fitness" is a very personal condition.  I remember when my daughters were participating in high school and college sports, "fitness" described a very highly developed combination of strength, endurance, agility, and power that took months of conditioning to develop. I never had the opportunity to take part in girls' sports while in school, so I really never experienced that sort of fitness.

While I was in college, though, I started the practice of taking very long walks (several miles), often including my trek to various jobs around town. For the most part, I have continued this practice ever since, sometimes adding long bicycle rides as part of my routine. For me, this custom has given a very good aerobic workout throughout the years. Nine years ago, when I tested positive for Huntington's Disease, I really started to make exercise a priority. I know some friends and family members wondered why it was so important to me, but I believe that it has accomplished the goal of postponing the development of signs of HD. In the winter, I go to the gym, and spend as much time as I can, usually about an hour, on the arc trainer, treadmill, and recumbent bike. Last year, I started to add weight training, using the machines at the gym. My workout is mostly aerobic, though. 

This past summer, I started to take much longer walks, from two to three hours, and I started taking large doses of ibuprofen and arthritis strength Tylenol, to keep my joints from causing pain. When I went for my medical check-up, I had high blood pressure (for the first time in my life). Since then, I have almost totally cut out painkillers, and my blood pressure has gone down.

The long walks and other exercise give me a great appetite! Maintaining a slim frame has never been my priority. Some feel that having a slightly higher body weight might postpone symptoms. Taking creatine does help your body maintain water in the muscles, making weight loss more difficult.

Nearly One Hundred Percent of the Possible Sun

We are having a string of beautiful, unseasonably sunny days, to which I have heard more than one weather man describe as "one hundred percent of the possible sun." I love that phrase! In fact, having been warmed by the constant sun for the last week or so, I can say that it has affected my soul, too, in a very positive way; also as a result of some very wonderful news that we received last week.

On Friday, we were at the neurologist's office, with the same cast of professionals that gave me my cloudy diagnosis nine years ago. We were there to learn the results of my baby brother's DNA test. He is the father of three, and has the love and support of his wife, but it was still a difficult decision for him to be tested. One look at the happy smiles on the faces of the doctors, nurse, and even someone passing in the hall, and we all knew that my brother's results were negative for Huntington's Disease. I've been smiling ever since!

I'd love to illustrate this blog with a photograph of my handsome brother, with his beautiful wife, sitting beside the twin five-year old boy and girl, with their seven year old big sister. But I can't do that, because now my brother will have to put HD on a back-burner, since it won't affect him or his offspring.  He can still participate in fund-raisers, but he doesn't have to worry about being an activist. Of course that's a great blessing, and we thank God for answering our prayers!  But, there's one small part of me that will miss having my brother able to do clinical trials with me.

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.