23 and Me

Day 66

Today is the 57th day of taking a full dose of Azilect and the 16th day on a full dose of Pramipexole.


The Pramipexole is beginning to kick in and I am feeling better.  My right arms seems to be swinging in a more natural way and my gait has improved. Using my right arm, however, to write or type still feels awkward and occasionally, I do shuffle a bit when I walk. All in all though, I am making good progress.

My test kit from 23 and Me arrived yesterday. This is a company that informs you about your lineage/ancestry and will help you find lost relatives. The cost generally is $99, but it is free for anyone with a Parkinson's diagnosis. The company is doing Parkinson's research and apparently making some headway.



Paul Cannon, PhD from 23andMe Parkinson’s Community:

"The deal with Genentech is a collaboration to whole genome sequence approximately 3,000 individuals with Parkinson’s or with a first-degree relative with PD. (The ratio is yet to be determined.) It’s a unique opportunity to learn more about the genetics of people with Parkinson’s disease and hopefully identify novel targets and biological pathways."

Once the kit arrives, all you have to do is spit into a little vial, put it back in the box and mail it out. Shipping is prepaid, which makes it pretty simple. The reason that I described the testing method (other than to gross you out) is that it took me several attempts to fill the vial. This proves that I do not have sialorrhea, the excessive saliva symptom that many Parkinson's patients suffer from.

While it will be interesting to learn more about my ancestry, I am not assuming that hidden relatives will show up on my doorstep.

Goodbye for Now PT!

Day 61

Today is the 52nd day of taking a full dose of Azilect and the 11th day on a full dose of Pramipexole.

I said goodbye to my PT today. Over the course of four sessions, I learned enough stretches to help keep my flexibility along with excercises to improve my arm swing and balance. OT is over as well, although there may be one Assistive Technology session in the future. I am happy that I will not be taking a half day (sick day) on Fridays any more.

From now on, I take my meds, do my exercises and stretches and see my doctor once every three months. This is the part of the post in which I do NOT use some trite catch phrase with positive affirmations...

Fox Insight Program

Day 60

Today is the 51st day of taking a full dose of Azilect and the 10th day on a full dose of Pramipexole.

Yesterday, after watching the Fox Foundation Webinar, I signed up for the Fox Insight program. It is

"an online research study to gather the world’s largest collection of data about life with Parkinson’s. Whether you have PD or not, your information – held safe and confidential"

Basically, you answer a questionnaire about your health, height, weight, symptoms and medications and check in every 90 days so that the online system can track your progress. This data, minus your personal info, can potentially be shared with hundreds of researchers.

I am also on the shortlist for next year when the Fox Insight Wearables program comes out with a device for the iPhone! Basically, it is watch that does everything that the Apple watch does, but also sends info on your medication, gate, heart rate, etc in real time to hundreds of researchers. This has incredible potential to improve the lives of Parkinson's patients. Imagine being able to record the improvement of a patients arm swing after X number of days on a particular medication? I am really excited about this!

Today, my right arm is swinging more naturally and other than feeling a little jittery (plus another inconvienant, but not really unpleasant issue) there are no troublesome side effects.

As a bonus, I am finding that since my diagnosis, I have stopped sweating the small stuff like when the schedulers at NYU fcuk up my appointments.

"Got to pay your dues if you wanna sing the blues. And you know it don't come easy," Ringo Star

Day 58

Today is the 49th day of taking a full dose of Azilect and the 8th day on a full dose of Pramipexole.

On the way to work today I began listening to  Always Looking Up: The Adventures of An Incurable Optimist by Michael J Fox. I was struck by his positive attitude, but based on the work that he does with his foundation, I was not really surprised. He wrote about his dystonia causing his feet to curl under and having to put a pair of loafers on just to walk to the bathroom in the morning.

I now remember how my feet kept curling under making it impossible to wear flip-flops this summer. At one point, I was at the park with my son at a place called the "Splash Zone." It is essentially a giant sprinkler. The water was up to my ankles and my toes just kept curling under.  If this has never happened to you, it is maddening. I got out of the water, picked up my cotton slip on sneakers and wore them in the sprinkler, which made the situation with my feet more bearable. Back to the present, somewhere around week three of taking my Azilect this problem went away. It somehow just slipped by me unnoticed. Inspired by Michael J Fox, I realized as I got out of the car and walked toward my office that I had something to be grateful for! So I am taking a moment to feel good about the way my treatment is progressing and while the warm weather is still with us, I must try to wear flip-flops at least once.

While I recognize and am grateful for the fact that I could have a much worse disease, I am assuming that life with Parkinson's will not be easy When I think about my life, however, I realize that it has never been walk in the park. I was an extremely unhappy child (most of this was my fault) and I started drinking at age 13 and just kept going until I was a full-fledged alcoholic (all of that was my fault). I have been clean and sober for over 15 years and but, "...you know it don't come easy." I have never been the smartest person academically, but somehow I managed to earn a Masters degree, write a dissertation and earn a doctorate. There are no guarantees in life. My medication may eventually fail in suppressing my symptoms, the latest brain surgery may be of no help to me and overall, I could get worse. Looking back on my life, I can remember that there was no guarantee that I would pass my certification exam (for the second time) and be given permission to write my dissertation. I did pass, however, due to a great deal of hard work. What I am trying to convey here is this is the way that I will deal with Parkinson's. In fact, it is the only way that I know how. I will take my medication, do my stretches and exercises and see my doctor every three months. I will keep a positive attitude and remember that, "It don't come easy." (For the record, yes, I realize that quoting Ringo Starr is extremely cheesy.)

For right now, however, I am just grateful that my toes are no longer curling under.













 

Day 57

Today is the 48th day of taking a full dose of my Azilect and the 7th day on a full dose of Pramipexole.

It could just be my imagination, but my right arm feels looser and my gate seems a bit better. Brushing my teeth with my right hand still feels awkward and I still instinctively reach for things with my left hand. Well, maybe  I will see some additional changes in two weeks, but I have heard that Pramipexole works differently with different people and can take up to 3 months to really kick in.

I remain patient.  

PT & OT Finishing Up

Day 55

Today is the 47th day of taking a full dose of my Azilect and the 6th day on a full dose of Pramipexole.

Today, I went to my last OT session as well as a PT session. My last PT session is next week. I will also go to my first and only Assistive Technology (AT) training for the Dragon software package.
I will be glad to have some of my time and sick days back, but I will have to remember to do my excercises and stretches.

Denied for the Transcranial Magnetic Stimulation (TMS)

Day 54

Today is the 46th day of taking a full dose of my Azilect and the 5th day on a full dose of Pramipexole.

Unfortunately, my application to take part in the Transcranial Magnetic Stimulation (TMS) trial was denied. It was denied for two very good reasons. First, I have only been on the medication Pramipexole for five days and it is preferred that research subjects be on medication for at least 30 days prior to taking part in the study. Second, my symptoms are too mild and it is too early on in the progression of the disease for me to take part in the study. I am taking this is good news. Hopefully, if they get my medication adjusted correctly, my symptoms will always be too mild for me to qualify for the study!

On a completely different note, it has been nice receiving email, text messages and phone calls from friends in the South and I hope that this continues. It is always nice to talk with friends when life throws you a new challenge.

Transcranial Magnetic Stimulation (TMS)

Day 53

Today is the 45th day of taking a full dose of my medication (Azilect) and the 4th day on a full dose of Pramipexole.

A few weeks ago,  I filled out an profile on Fox Finder, which is an online program designed to place patients in clinical studies related to Parkinson's disease. (The Michael J Fox Foundation is really amazing.) Today I received a phone call from a research center doing a clinical trial of Transcranial Magnetic Stimulation. They are reviewing my medical records and will let me know tomorrow if I am accepted for the study. Please keep your fingers crossed!

TMS is:

“... applying strong magnetic field outside the skull, without invasive intervention. Special coils that generate magnetic fields are just powerful enough to penetrate the skull and may change the way that the brain responds to stimuli,” 

Research increasingly shows that a new treatment, Transcranial Magnetic Stimulation (TMS), a non-invasive method of stimulation of the brain, has the potential to help control motor symptoms of PD  non-invasively.

Yes, I know that it sounds/looks hokey and the research results on this method are mixed at best, but it couldn't hurt. When it comes to the field of medicine, changes come slowly. Keep in mind that washing your hands before examining a pregnant woman was once a radical concept! Two things appeal to me about this method. First, it is noninvasive and second it is designed to work with the motor symptoms of Parkinson's disease. My three main symptoms include shuffling gait, micrographia and bradykinesia which are all motor symptoms.

Do you think that I should ask for a trim while I am there?

Hopefully, I will have something positive to post about tomorrow.

And just like that...

Day 51

Today is the 44th day of taking a full dose of my medication (Azilect) and the 2nd day on a full dose of Pramipexole.

And just like that, Parkinson's Disease was gone! (For forty minutes anyway!) Watching my four year-old son fly a kite for the first time was the the best medicine!

How does that make you feel?

Day 48

Today is the 41st day of taking a full dose of my medication (Azilect) and the 6th day on a half dose of Pramipexole. My assumption is that I will not see effects until 2 to 3 weeks from the day that I begin to take the full dose. I am very hopeful because I just cannot accept that my current condition will be the "new normal."

Warning: My train of thought has always been a roller coaster and today's post jumps around a great deal.

How does that make you feel?

Last night my therapist, Nicole, asked me,
"How do you really feel about the diagnosis and having Parkinson's?" 

 I responded,
"Well, I am relieved that my symptoms are not worse and that the prognosis is pretty good and…"

  Nicole cut me off and said/asked,
 "You seem to be more honest in your blog, so other than the prognosis, which is pretty good, how do you really feel?"

 I replied,
 "I am fucking angry. Yes, I am pretty lucky for someone with Parkinson's, but I still have Parkinson's. It sucks. It is a major inconvenience and the cause of way too much stress in my life. I go out of my way to plan and prepare in order to avoid stress and anxiety, because I do not do well  with either and now, I have a disease in which one of the actual physical symptoms is anxiety and it sucks. This disease is expensive, time-consuming and completely inconvenient."

 So if you were interested in how I actually feel, there it is. 

For the past year , I have had trouble falling back to sleep and after I woke up and this problem appears to be getting worse. Apparently, this is a common symptom of Parkinson's disease. I hope that the medication will eventually help with this because people used to be jealous of my ability to fall asleep anywhere anytime.

Another thing that I have blogged about prior is lower back and butt pain. I have always worked out and I have never had lower back problems and while my muscles have been sore in the past (especially after a trapeze class), my glutes never were. Below you will find a quote on lower back and glute soreness from a spinal health website.

"Parkinson’s Syndrome Sufferers may present with various combinations of back, buttock and leg pain, numbness and muscle weakness, Symptoms are often aggravated by an abnormal asymmetrical gait arising from loss of spatial awareness muscle spasm and loss of limb control."

It reminds me of that old joke, "Does your face/ass hurt...  ...because it's killing me!

This morning I contacted NYU and left a message indicating that I was interested in participating in the Transcranial Magnetic Stimulation study

Transcranial Magnetic Stimulation (TMS). TMS uses a small (palm sized) powerful magnet to generate a localized magnetic field. This magnetic field passes through the skull and into the brain without pinching the skin; it interacts with brain cells and has the potential to change the function of these cells and/or their connections and possibly improve Parkinson’s symptoms. 

Update: next Friday, September 18, I will receive training on Dragon software at NYU. Currently, I am using it only for dictation, but I want to learn how to use it to open files, save documents and enter passwords because using the mouse is  is way too frustrating.

I want a new drug - one that won't spill. One that don't cost too much, or come in a pill.

Day 47

Today is the 40th day of taking a full dose of my medication. Today is the 5th day on a half dose of
Pramipexole. I am looking forward to Saturday so that I can begin taking the full dosage. 

 

Today, I volunteered for three studies on Fox Finder. This is the online tool that links volunteers with research studies related to Parkinson's disease. Two of the studies are web-based and observational in nature and the third is for trials for a new drug. I only signed up for the drug trial because it is taking place out of NYU where I receive treatment for Parkinson's as well as OT and PT. Of course, before I start taking anything, I will check with my doctor.

Tonight, I am back in therapy after a three-week break. I look forward to seeing Nicole and updating her on my progress.

 

Billy Connolly

Day 46

Today is the 39th day of taking a full dose of my medication.

I am keeping today's post brief. Here is a clip of Billy Connolly from a few years back on the Conan O'Brien show. The talk about Parkinson's disease starts 1 minute and 20 seconds into the clip.

 

 I am happy that I do not feel the urge to gamble.

PD Smart Watch and App?

Day 45

Today is the 38th day of taking a full dose of my medication.

 About a year ago, Intel teamed up with the Michael J Fox foundation to produce a PD smart watch and app.  Unfortunately, this seems to have stopped at the pilot study.  This is a shame because the idea seemed to have so much potential.  Imagine being able to see if your arm was swinging more naturally as you increased, added or changed medication. Now imagine what could happen if doctors and patients had access to these changes in others.  We could see, for example, that adding a dopamine antagonist aided 24% of patients in improving their gate or the natural swing of their arm(s).

There is some indication  that exercise slows the progression of Parkinson's disease. With this in mind, you would think that there was money in Apple or Fitbit developing a product for Parkinson's that would be paid for through patient's insurance.

I get cold easily and lately, it seems to be getting worse. There is some indication that people with  Parkinson's disease  often feel too hot to cold.  If you hear or read anything about this as a symptom, please let me know.

Day 42

Today is the 35th day of taking a full dose of my medication.

I went to both OT and PT today at NYU. I cannot say that I am enjoying the experience, but I think it will help and I like both therapists. In OT, I did some excercises to work against the Bradykinesia. I also received  a weighted pen, knife, fork and spoon. In PT, I worked on balance and getting my arms to swing more naturally when I walk. The physical therapist also thinks that trapeze will be helpful with balance and slowing the progression of the disease!

Another update on the Pramipexole, they shipped the drugs without my authorization and therefore, they waived the copay!  If the drug works as well as my doctor thinks it will, the next order will be placed at an online Canadian pharmacy. I cannot believe that the retail price of the drug in Canada is cheaper than my co-pay! We really need to fix the America health care system/industry.

The Yellow Jersey!

Day 41

It is the 34th day of taking a full dose of my medication. 
Today, I taught my last two spinning classes at Credit Suisse for 9 months while they remodel the gym.  It was a happy occasion with prizes and confetti. I played the songs that were "the greatest hits" from the last 15 years of teaching and Rob, one of the great people who has been there from the beginning, awarded me with the yellow jersey.

Rob, while I know it's only temporary, I greatly appreciate it.

Parkinson's disease can go to hell!  I will never willingly give up my classes!

Yesterday an old friend Don, from USC, contacted me with some words of encouragement. If you are reading this Don, thank you! I miss my friends from the South and I must make a trip to Colombia SC as soon as possible, but as  Stevie Ray Vaughn sings,  "Money's tight, nothing free
won't somebody come and rescue me..."


On the subject of money, I may look to the Great White North to fill one of my prescriptions. With a little luck, paying retail online from a Canadian pharmacy may be even cheaper than my copay! I will post information as soon as I pick a pharmacy.

While the optimist in me is counting on the Fox foundation, I have very little faith that they will ever find a cure for Parkinson's disease. Why? There is no money in a cure, the money is in the medication.

 Here is Chris Rock on AIDS and medication:

That Hurt My Feelings

Day 40

Today is the 33th day of taking a full dose of my medication.


Please excuse the following non-Parkinson's disease related post.

When trying to get my 4 year-old son to take a bath, eat, go to bed or get dressed, a debate often ensues. Often times, during the course of one of these debates, he will simply say, "you just hurt my feelings…" I was thinking about what a wonderful way this is to end an argument. I encourage you to try this with friends, family and colleagues.

One time, at my last job, a colleague was playing the blame game and I was on the receiving end. She began the email argument by copying everyone and their brother and blaming me for something that I can no longer recall. These email communications went back and forth and the number of people copied just kept increasing. At one point, I responded to her alone, "what you just wrote has nothing to do with the topic at hand, it was simply a personal attack and it hurt my feelings…" The next thing I know there was a knock on my door, my colleague stepped in and apologized. By the end of that business day, an email went out from her apologizing to me and explaining that she had had a bad day. In addition, she copied all of the people on the original email. So try it, because it works!

Words of Encouragement!

Day 39

Today is the 32th day of taking a full dose of my medication.

In the days of texting, email and Facebook messenger, it is both rare and wonderful to receive actual phone calls and written cards or notes. Yesterday, my brother called to see how I was doing and my friend Cindy sent me a card with some words of encouragement.  These two communications really brightened my day.

Update on the Pramipexole my deductible is going to end up being $1680 for the year! Getting sick in this country is not cheap. I have found two sources of reimbursement for my Azilect, which normally  has $107 deductible under my plan. The first is the Azilect Co-pay program in the second is the Assistance Fund. Depending on which one of these funds you use, it can bring your co-pay down somewhere between $5 and $25 a month.

That is all for now