Holy Week Reflection

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     Here is a link for a You Tube recording of "Wir setzen uns mit Tranen nieder,"

the closing movement of Bach's St. Matthew Passion.   

It is one of my favorite choral pieces. 

(I'm sorry that it may include a commercial on you-tube, 

but you can tell it to skip the ad.)

       

       The translation is:  We sit down in tears and call to you in the grave: 

rest in peace, peacefully rest,rest in peace, peacefully rest! 

Rest your exhausted limbs! Rest in peace! 

Your grave and tombstone will be a comfortable pillow 

and a resting place for the soul and for the fearful mind.

Filled with pleasure, the eyes can sleep there. 

We sit down in tears and call to you in the grave. 

Rest in peace, peacefully rest.  

       The music during Holy Week is so tragic and haunting. This is only the second year, in my entire life, that I haven't had a church affiliation. I really miss the frantic, feverish rehearsals, where we would combine the somber music of Lent and Holy Week with the joyous, very elaborate music for Easter Sunday. Resurrection Sunday was one day that I could always expect a nervous stomach!
  
      My dad was a bass in the church choir, and we both sang in the adult group when I was in high school. He loved to sing the bass part just about any time. I remember once, the choir was preparing to sing The Seven Last Words of Christ by Theodore Dubois. Dad especially loved the movement that went: "He is death guilty! He is death guilty! Take him! Take him! Let us crucify him!" He sang it while swinging my brother back and forth, only changing the words to "Take him! Take him! Throw him in the water!" What fun! 

    My father was a staunch Christian, as a youth, and continued to attend church for most of his life. There came a time, though, when he turned his back on his faith. During the last few years of his life, when he was already symptomatic for Huntington's Disease, he decided that he wasn't going to continue to be a believer. His mother, a very prayerful woman, was very unhappy with my father's choice, but she knew that it was part of the disease. She continued to pray for his soul, even after he died.

My "New and Improved" Brain Basket

I've noticed that there has been a great deal of interest shown in my previous blog, "My Brain Basket." Recently, I have made a few changes in the supplements that I take, so here is an updated list. 

Doctors are still reluctant to pass this information on to the hopeful HD population. These supplements, along with exercise, give me the feeling that I am taking control of my HD self! At this point, I don't follow any special diet, and I am still on the heavy side. Maybe that has something to do with my late onset of symptoms. There is a Facebook site dealing with HD and Proper Nutrition/Exercise/Lifestyle, from which I have gotten some great ideas.

Here is my new list of supplements, and where they can be purchased:

•  Concrete Creatine - Take one capsule daily

•   Coconut Oil Capsules Source Naturals - I buy from Vitamin Shoppe. At this time, I take 2 capsules daily. A full dose is 4 capsules, but I also use some coconut oil in cooking.
  

•   Trehalose (Neurocoat) - 4-5 tsp. daily - I buy from Brooklyn Premium online. Halo Brand trehalose water is also available at your local Meijer

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

•   Turmeric - 450 mg daily - I purchase from Costco. 

•    Pearl Probiotic - one tablet daily - I purchase from any pharmacy.

•   Vitamin E - 400 I.U. - 1 tablet daily - I buy the Kirkland brand.

•   Celexa Antidepressant (SSRI) - You need a prescription for this.

•   Fish Oil - Fish oil is very important, and I take 4,000 mg daily.

•   Krill Oil (concentrated fish oil) - 1 gelcap daily.

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.