Friends With PD

Day 93
Today is the 84th day of taking a full dose of Azilect and the 43th day on a full dose of Pramipexole.


While, in general, I have been feeling better, I would still like my right arm to swing more naturally and to have less shuffling in my gate. Next month, therefore, my dose of pramipexole will go from .75mg to 1.5mg. My doctor and I had originally agreed to go up to 1mg, however, they do not produce 1mg tablets in pramipexole extended-release. Since the pramipexole has helped so much, I am confident that increasing the dosage will improve my situation. I should note, that there have been side effects and that my doctor warns me that the side effects will most likely increase as the dosage goes up. It is not something that I want to get into on this blog, but if you are a friend, you can ask me and I will let you know what side effect I am experiencing. The co-pay  for pramipexole on my prescription drug plan is $420 for a 90 day supply. I can buy a retail from Canada, however, for only $178 with free delivery! What is wrong with our country? 

On other news, I spoke with a friend, from back in my swing dancing days, who was diagnosed a few years back and he gave me some good advice on websites and services (including some services that I should avoid).  Then on Saturday, I spoke to another friend, also from the NYC swing dancing scene, who was recently diagnosed. I find it shocking that three people in such a small group of individuals were all diagnosed in the last few years, but at the same time, research indicates that one out of every hundred people will be diagnosed with Parkinson's disease. I hope that in the future the three of us will be able to help each. It is so important to build a network of supporters after being diagnosed.  So far, I have used the website  Patients Like Me as a support group.  While I have found this website to be very helpful, it is nice to speak to real people about your problems and challenges. I should clarify that I would rather use an online support network then to have anyone I know diagnosed with Parkinson's, but I hope that goes unsaid/untyped. 

Thursday, I have dental surgery scheduled. I am having a hole drilled in my jaw so that an implant can be put in. If you have never had this procedure done, when it is over, you feel as though someone has drilled a hole in your jaw! Luckily, I have five or six oxycodone pills left over from my last surgery. I do not intend to suffer needlessly! After surgery, I will be headed to Revolution 55 spin studio. I will be teaching a 6:15am sunrise spinning class on Monday mornings and I have paperwork to fill out. I am excited about this new class for two reasons, first and foremost this will allow me to walk away from my Sunday morning class and give me a full day to spend with my wife and son. Second, in over 17 years of teaching spinning, this is the very first time that I will teach in an actual spinning studio! (I generally teaching gyms.) 

Enough for now.

Technology

Day 84
Today is the 75th day of taking a full dose of Azilect and the 34th day on a full dose of Pramipexole.

There has not been much to blog about lately. I watched a few recent videos of my son and I playing on the beach and I noticed that while my right arm is no longer glued to my side, it is not swinging naturally. At my next appointment, or when it is time for a refill, I will ask my doctor to change my script from .75mg to 1mg of Pramipexole. 

Last Wednesday, October 14, I experienced my first "off episode." This is when, for whatever reason, your medication just stops working. It can be caused by how much you did or did not eat, the half life of the medication and many other reasons. It was a bit scary, but like most things in life, it quickly passed.

I finally had my Asstitive Technology (AT) session on Friday, October 16th. I learned several new commands for the Dragon software package. The "grid" command is very cool. The OT also taught me about click lock, which will make it easier for me to drag and drop documents. She (OT) recommended a better mouse and microphone, which they will get for me at work. 

I also learned that it is fine for me to use the mouse with my left hand. Everyone else told me that my right hand would get worse if I did not use it. It turns out that this is not true. I am going to have to reprogram the mouse, but that does not seem like it will be too challenging. 

That is all for now.

End of November

Today is the 67th day of taking a full dose of Azilect and the 26th day on a full dose of Pramipexole.

At the end of November, I will have my second appointment with the Doctor (Movement Disorder Specialist). I have so many questions to ask. The results of the medication have not exactly been what I had expected. Things did improve, however, after taking the Pramipexole, so I am wondering if I should go from .750 mg to 1mg? I am also wondering if this increase would make the side effects become worse? I only have one inconvienant, although not really unpleasant side effect. (It is not E.D.)

The doctor has also offered to speak with my wife and answer any questions that she may have. Kate has decided to take her up on the offer.

In the mean time, other than while doing my excercises and stretches or trying to type, I do not think of PD that often.

Random Thoughts....

Today is the 62nd day of taking a full dose of Azilect and the 21st day on a full dose of Pramipexole.

Today's post will be a small collection of random thoughts.

Something My Father Once Said
I have a vivid memory of driving in the car with my father when he told me something that had happened to him.  For the life of me, I cannot remember what it was, but I do remember it being something that would have greatly upset me. 

I asked him, "What did you do?"

He looked at me like I was crazy and responded something like, "What do you mean what did I do? I had a wife and children to provide for. I woke up the next day and I went to work. That is what I did." 

I now see the logic behind what my father said. He had a wife and at the time, three children (some years later my younger brother Paul would join our clan) to provide for, he did not have any time to sit around and feel sorry for himself.

I thought a lot about that day in the car immediately after I was diagnosed. The doctor gave me the news on a Friday and my wife and son were already gone away for the weekend. I did a lot of walking that weekend, saw a bad movie and tried to form a plan on how to handle the situation. Then, early on Sunday morning, I had a flashback of  that day in the car with my father and I realized that I had a family to take care of, a career that I loved and a life that would keep going on. I immediately decided to get up on Monday morning and go into the office. That was my plan.

Cause Time
Warning, Politically Incorrect Rant
Well, it is that time of year again.  It is time for Breast Cancer and Domestic Violence Awareness  Day, Week or Month. Raising money to help victims and to fund research projects is extremely important. I wonder, however, what "awareness" campaigns actually do. On college campuses we have a bunch of students standing around with faculty and staff making it clear that they are " Against Domestic Violence" or "Against Breast Cancer."
What does this actually accomplish? I am aware that I am being more than just a little bit snarky here, but this is a legitimate question. Why do we do this? Is there a place somewhere on the planet in which people gather together and support domestic violence or breast cancer? Should I feel compelled to gather up a few thousand of my closest friends, block off a street somewhere and hold up signs that read "Down with Parkinson's Disease!"?

Rant Over

Feeling Better...

Day 68

Today is the 59th day of taking a full dose of Azilect and the 18th day on a full dose of Pramipexole.

For the first time since my diagnosis I am beginning to feel better. I credit this to the fact that the Pramipexole is kicking and to my OT and PT exercises. Logically, there was no reason that I should have felt worse immediately after the diagnosis. After the initial relief of finally finding out what was wrong with with me, however, a period of mourning did set in.

 Early Warning Signs
 I thought that might be helpful to list some of the early warnings in order from the date of diagnosis.

1.  Depression, 10+ years
2.  Frozen shoulder, 2 years
3.  Anxiety with some related insomnia, 18 months
4.  Holding my right arm and awkward way, 1 year
5.  Shuffling gait, 1 year
6.  Toes curling under (dystonia?), 6 months

While I have struggled with cyclothymia for roughly 25 years, real depression set in about 10 years ago. My doctor thinks and I now agree, that this was the first early warning sign.   Although my life's circumstances were certainly not good at that time, after having been diagnosed with cyclothymia many years prior, something made me give in and finally start taking medication. I now think that the depression (which is half of cyclothymia) really escalated. I also now know that depression and anxiety are NOT the results of being diagnosed with Parkinson's but actual physical symptoms of the disease itself.

Due to the fact that the other symptoms/early warning signs are more self-explanatory and have been described in this blog previously, I will not re-examine them in this post.

Back to the Present
Today, I am feeling much better. When anxiety sets in, I label it "not real" and this allows me to move on. My right arm is swinging more naturally when I walk, I am shuffling less and my gait has improved. Of course, with the drugs come side effects and the one that I am currently experiencing is inconvenient but not entirely unpleasant and I will leave it at that.

Final Note
Medical marijuana is beginning to show some promise with Parkinson's patients. It relaxes the patient, reduces tremors and has other positive effects. If I get to that stage in the disease, I am buying some edibles and chowing down!