Coming Out of the Closet Times Ten

I just celebrated my 61st birthday! It doesn't sound old to me, for some reason -- probably because I work with people in their 80's and 90's and 100's. They make it easy to feel young!

Coming out of the closet two years ago, when I started keeping this blog, has been accomplished gradually. At first, the blog itself was hidden (by me), and I just shared it with a few people. The latest setting that I have makes it "google-able," and that is a bit frightening to me! I have also started calling myself a "Huntington's Disease Activist" on Twitter and LinkedIn. In order to keep my part time job, I had to reveal my status to my employer, but at that time it was a secret.

Why did I keep it a secret for so long? One big reason is that my husband, who is an insurance man, thought I shouldn't tell anyone. In addition, when I was applying for jobs, I didn't share my status, because my biggest fear was that "people wouldn't take me seriously." I also did it for my daughters, so that they wouldn't have to face discrimination in the job market. And, of course, each of them may decide to be tested at some point in the future. I also tried to protect my untested brother, who happens to share my last name. Now that I am coming out of the closet times ten, the names of my loved ones may be more easily found in relation to Huntington's Disease. That's a chance I am afraid to take, but I will.

This is definitely a great time for me to become an activist for Huntington's Disease. Many important clinical trials are getting underway, including gene silencing trials, which I learned about from the many Facebook HD groups that I have joined. In order to learn more about participation in clinical trials, I called my neurologist a few weeks ago. It's easy to put off visits to the doctor, especially since, at this age, becoming symptomatic for Huntington's Disease is a real possibility. So, when I called to schedule an appointment, I learned that it has been two years since my last examination. That's a long time to claim I'm pre-symptomatic.

My husband accompanied me to my appointment, and I was surprised by his lack of knowledge about HD and me; in particular, he didn't even know my CAG count (which is 42). When I got tested eleven years ago, I did it on the sly, and I think he has pretty much been in denial for many years. This time the doctor did a complete neurological  exam, mostly for the benefit of the five residents, nurses, social worker who were crowded into the little examination room. Happily, I passed with flying colors, and will be starting a couple of clinical trials in a few months. So, I will stay out of the closet (for the time being).

Over His Dead Body

My father was the first one to be tested in our family, literally over his dead body!

When Dad was in his late fifties, he got in trouble by hitting his second wife, who was weakened by breast cancer at the time. She called the police, and he was taken to a downstate jail, near where they lived. 

At the time, our little family was getting ready to take a summer camping trip. When my father called us from jail, we ended up taking a week-long vacation downstate, where we camped in my mother's driveway in our home town. The whole family gathered during this time, and all of us adults were trying very hard to protect our children from too much knowledge of Grandpa's delicate condition (Huntington's Disease), which really had not been named in respect to our father. The family of our stepmother also rallied to defend their mom, who was afraid that he might do it again!

In preparation for meeting with the judge, we decided to tell him that our father did, indeed, have Huntington's Disease, and that we would see a medical specialist as soon as possible. As we spoke to the judge, Dad said,"I do not have Huntington's Disease!" and he gave me a "sidewinder glance," as we called it. Every time think of that conversation, I always remember his "sidewinder glance!" and how guilty I felt to be the one betraying him. The judge released him, as long as he agreed to seek a medical expert.

Dad and his wife moved to Wisconsin so they could be near his mother, who was still living at this time. He promised that he would try not to hit his wife anymore, and that he would go to a Wisconsin doctor that I selected. In retrospect, I now realize that I should have contacted a Chicago Huntington's disease specialist, but I ended up setting up an appointment with the neurologist that had seen a cousin of ours in a nearby town. This is the first time that I got to witness a neurological exam, and Dad's symptoms were quite obvious to me. At the end of the exam, the doctor said that it was probably Huntington's Disease, since his father and cousin had it, but recommended that he get the genetic test, which had just been developed. Of course, my Dad never returned to that doctor; he was there under judge's orders! He also never had the genetic test, while he was still living. He also never admitted that he had Huntington's Disease.

My stepmother eventually died from the breast cancer, and my father lived alone, near his mother in Wisconsin for the next year. We went to see them almost every weekend, and took both of them shopping for his staples - pinwheel coffee rolls, Big Macs, and bananas! Every time we saw him, he asked that we take him fishing in Hayward, which was one of his favorite vacation spots when he was younger. We always had to refuse, which made us very sad! But we were pretty busy with our family at that time, and his mom was still alive, too. So we never got to take him on his dream fishing trip.

Dad also rarely answered his phone, so when Grandma couldn't reach him one hot summer day, we thought he was just ignoring the ringing of the phone. Finally, after a few days of not reaching him, my younger brother, who was there helping Grandma, used his key to let himself into our father's house. He found Dad's body where he had fallen in the hallway, apparently a few days earlier. My brother was very young (in his twenties) at this time, and many years later said that this was the most terrible thing that he had ever experienced.

During the following days, we spent lots of time with our Grandma, trying to plan a memorial service that would ease some of her pain. Since the body was somewhat decayed by the time we found it, we decided to have him cremated. We didn't let Grandma see his body, and I didn't see it either. My husband did the official identification, and it was something that haunted him, too. 

Then, I had the brilliant idea of having his DNA tested, so that at last we would know the answer. My brothers both agreed that we could do it, but it also delayed the cremation process. The genetic test for HD at that time required two test tubes of blood, and it was the coroner who had to take the sample. It wasn't easy, but he got enough for the test and sent the sample to the lab that I instructed him, and the answer was sent to our pediatrician, who was our family doctor at the time. So, we finally had an answer, even over his dead body! He was positive, with a CAG count of 42.

Like It's My Job

I came out of the Huntington's Disease closet when I went on SSI disability, more than a year ago. Since then, I have been using my "work days," or days when I used to work, to exercise my body and my brain to fitness, with the hope of delaying the onset of symptoms of HD. In fact, I have accepted this new use of my time and energy like it's my job, because that's what it has become - my occupation and my daily grind. 

Besides exercising physically and mentally, I spend quite a bit of time (and money) in the purchasing and consumption of nutritional supplements. Maintaining a higher body weight seems to help, as well as these supplements that I take each day: 

Con-cret Creatine - Very easy to take, one capsule a day

Blueberry IQ - Two capsules daily 
(equals 1 cup wild blueberries)

Ubiquinol Concentrated CoQ10 - 
One 100 mg capsule daily 

Omega 3 Fish Oil - One 500 mg capsule daily

Trehalose - Two tablespoons daily

Turmeric Extract - One 300 mg capsule daily

Vitamin E - One 400 mg daily

Citalopram Antidepressant - One 20 mg tablet daily

What about my part-time employment, working with Alzheimer's patients? Well, in anticipation of getting rid of me entirely, when I lose track of just one more person, they have hired someone to take my place, and I only work one day a week -- Sundays, of course, since no one else wants to do it! Before I lose this position completely, I hope to solicit a few new music students via my new website

A few months ago, I put a website together for myself (like it was my job!) It is my hope to attract a few piano and voice pupils, since I have always been a music teacher. Using some you-tube videos that I made from old family movies, I included some samples of my work over the years. I asked family members for input on the site, and it looks pretty good now. I then invited a few former students and colleagues to write a recommendation, and some were kind enough to do it. 

The somber truth is, though, that the people I asked for a testimonial all know that I am on disability for Huntington's Disease. Most of them have not seen me for a long time, and are probably afraid to put their name on a recommendation, for fear that I am already symptomatic. 

By the same token, any prospective students might have the same issue. What if they fear that I am already deep in the mental and physical decline that happens with advanced Huntington's Disease? 

Bring on the self-doubt! 

Another Holy Week Reflection!

"Aus Liebe Will Mein Heiland Sterben"is a hauntingly beautiful soprano solo from The Saint Matthew Passion, which was the greatest work composed by J. S. Bach. Here it is sung by one of my favorite divas, Kiri te Kanawa. Please feel free to listen to her rendition as you read. This was from the CD made when she recorded it with the Chicago Symphony Orchestra and Chorus in 1990, when Sir George Solti was the conductor, and I was in the chorus! Here is a translation of the words:

Aus Liebe,
Out of love,
Aus Liebe will mein Heiland sterben,
Out of love my saviour is willing to die,
Von einer Sünde weiß er nichts.
- Of any sin he knows nothing -
Dass das ewige Verderben
So that eternal ruin
Und die Strafe des Gerichts
And the punishment of judgement
Nicht auf meiner Seele bliebe.
May not remain upon my soul.

I have a younger cousin (at least younger than me!) who is even a bigger fan of music than I am, and he is a published writer as well! This week Tim shared a lovely reminiscence with me, including his last meeting with my father, who had Huntington's Disease. Cousin Tim lived with his parents in Beloit, Wisconsin at the time, and my father lived there, too.

"About 30 years ago, you dropped in to eat at the restaurant where I worked. You were with your dad. I got a message from the waitress; you had written me a note on a napkin that you were Kiri te Kanawa offering to leave behind an autographed bra. I must have been telling you around Thanksgiving that I was listening to her records. So I went out and sat with you and your dad at the Toot-N-Tell. This was the first time I had seen your dad in years and probably the last time I saw him at all. I was really happy to see him. Melanie and I always have said he reminded us of Andy Williams.

It seems like you and I concocted a plot to see te Kanawa for her upcoming concert at the Auditorium Theater. I forget the exact date, but it was in March of 1985. I was so excited! For one thing it was a chance to see you outside of Thanksgiving, and for another, it was my first time seeing an opera recital.

I remember taking the bus in from Beloit to O'Hare. This was back in the days before cell phones or internet, so I  don't know how Wayne found me with a lack of specific place to meet but he did! I always chalk it up to intuition and people skills.

We got into downtown where I met up with you and Candace at Berghoff (I walk by there most work days and always think of you).  I couldn't have been more excited to eat dinner with you and another soprano. For me it was unforgettable. Then we made our way to the theater. I can't remember te Kanawa's whole program but I remember "Depuis le jour" from Charpentier's "Louise," an aria from Bellini's "I Capuletti e i Montecchi," the famous aria from "Tosca," and the haunting "L'altre notte" from "Mefistofele."  It's engraved in my heart.

I just wanted to write as a sort of anniversary remembrance. Funny how time moves! At that time Heidi would not have been 2 and Gretchen had not arrived at all. Now they are grown and here we are a little older too. It is such a special memory, spending time with both the family diva and an international diva. I just wanted to remember this with you before March actually ends. I just got in under the wire.

I hope you've had a good winter. I am ready for some warmer weather. I used to be indestructible as far as cold temps go, but the older I get the harder they are to endure. Not that I am complaining. Just observing... ;)

Andy and I were looking at photos from last year, and every time we saw you, he exclaimed "I like them, they are such lively!" Despite an advanced degree, I could not say it better myself. We're having coffee at the moment, and Andy asks me to be sure to say hello.

Happy Kiri te Kanawa anniversary!

Love,
Cousin Tim"

My Mom and Jane Fonda

My mother, who is still trim and healthy at the age of 80, was one of those girls who purchased Jane Fonda's original VHS tape when it first came out in 1983. And she's been doing the workouts faithfully ever since! 

There was a time when I snickered when Mom mentioned using the Jane Fonda exercise video, thinking that it couldn't possibly be good enough to keep a person in shape. In fact, I'm pretty sure that, even though it was a very important part of her life over the years, she didn't often mention it to me, probably fearing my scorn. 

Well, I recently started doing the early video, beginner's level, and many of the movements are much too difficult for me! Especially the "cool-down," where one has to actually do a shoulder stand, with the legs extended behind. Oy! If my mom is still doing that portion of the video, she's a great example a flexible senior! And what about those presto tempi??

When she first started doing Jane Fonda's workouts, Mom was recently divorced, and Jane Fonda's message of personal empowerment rang strong with her. Now that I've become a Fonda devotee, I've discovered many new videos that she has made, including two levels of Total Body Workout and a Walking Cardio Workout, which can be found on YouTube. She stresses having a posture of preparation and power at all times. She also mentions her recent hip and knee replacements, and how they have given her a new lease on life. I'm proud that my mother, like Jane Fonda, has been able to stay in such good shape. She's usually on some kind of diet, besides doing the exercises, and she has set a great example to her family.

Unfortunately, I did not inherit my mother's constitution. Instead, I inherited Huntington's Disease from my father. Hopefully, I will be able to continue to do a variety of exercises, including Jane Fonda's workouts, with the goal of delaying the onset of Huntington's Disease. My father had already been symptomatic for several years when he was my age, sixty, and he died at sixty-five. He spent his last few years living a very sedentary lifestyle.