My Confidante

It's amusing to try to understand our personality quirks...

One thing that I have often had is a best work friend, or confidante. When I learned that I had Huntington's Disease, I was employed at a special ed school in Chicago. The school was suffering from administrative difficulties, and the teachers and staff were very unhappy. One of my coworkers, Miss Pat, also became my confidante as we worked together to try to save the old ways that made that school so extraordinary. At that time, I had not even told my family about my positive gene test. They still thought that I had put the results "on hold." I told Miss Pat about HD, and she promised not to reveal the secret, and she kept that confidence for many years! Unfortunately I had to leave there suddenly, as we attempted to lead a mutiny against the principal. (But that is another story!).

My next confidante was Cheryl, who was a fellow employee at another job. I felt compelled to share my HD story with her, and she was willing to listen! Even though I am no longer employed there, we still share a camaraderie via phone calls. Other colleagues who had served as confidantes are my carpool friends from the Chicago Symphony Chorus. As we drove together for almost thirty years, we definitely shared many things. My carpool buddies knew about my decision to be tested in 2004, and gave me what support they could at that time.

In the cases where I didn't have a workplace confidante, when faced with difficulties, I tended to withdraw to my office, thus avoiding conversations with other teachers and students. This was not a healthy practice, and often led to new problems. 

At my present position, I work fifteen hours a week doing music therapy with Alzheimer's patients. As a recipient of disability, I am only allowed to make a certain amount of money, but I was allowed to continue doing activities with the residents. When I applied for disability, I had to "come out of the HD closet," informing the administration at the retirement home about my situation. Since then, a few people have asked why I can't work more hours, but most of the other employees there just accept my situation. Two RA's have become confidantes, though, and have asked for more details about my condition. They have been both supportive and sympathetic!

On Becoming a Recluse

 

Sometimes the winter weather takes a toll on everyone! I spoke to a nurse on Wednesday, and she said that, thanks to the constant snow and cold in our area, everyone is gaining weight, forgetting all about exercise, and feeling a bit like they need some comfort food.  Obviously, she mentioned it to me, because I was demonstrating all of those symptoms! Since my trip to the doctor, our family practitioner, I am considering becoming a recluse, like Boo Radley in To Kill a Mockingbird. He was the one who never set foot outside his house. At this time, staying inside seems like a good plan!

Yesterday was the first time I felt like a second-class citizen, a person inferior to everyone else and the object of discrimination. The doctor knows that I recently went on disability for Huntington's Disease, and insisted that I am eligible for Medicare immediately. Well, I have attempted to keep up to date with all of the changes, but I know that there still is a two-year waiting period for patients with Huntington's Disease. The doctor spoke to me as I might speak to a child, or someone with a developmental disability, "All of my other mentally ill patients are able to get Medicare right away." Well, I am not a mental patient, at least not now. That tone of voice hurt, as the doctor sighed and marked my form "no charge," advising me to apply to ObamaCare.

It's so appealing to just stay home and not deal with the stupidity of others! My husband, who is by nature a very outgoing person, has been afraid that I will turn into a recluse, since my diagnosis. It is tempting…

Bad Things/Good People

In October, shortly after I wrote about my brother's great genetic news, his mother-in-law suffered a massive stroke, and died just a couple of weeks later. Just when we were enjoying a wonderful time of celebration, we got the horrible news. Her children were very close to her, and she and her husband were really enjoying being loving grandparents of three energetic children. She is already sorely missed by all who knew her. This brings to mind the eternal question - "Why do bad things happen to good people?" 

Mind you, I don't consider myself one of the victims of this adage. In fact, I thank God every day for blessing us with a healthy and happy family life. We are so proud of our two beautiful daughters, and eagerly anticipating the coming blessed event of the birth of a granddaughter! And my own mother is happily ensconced in her new condo, looking forward to a very important birthday next month. 

But we all know that circumstances can change very quickly! I try to continue to keep in a spirit of prayer, mostly in thanksgiving for the blessings of life.

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