Been awhile....

Day 141
Today is the 132nd day of taking a full dose of Azilect and the 24th day of taking a 1.5 mg dose of Pramipexole (after 68 days on a .75 mg dose).

I am in Florida on vacation with my family and soon, we will be heading to the Summer Solstice Celebrartion in Lake Wales Florida. I am hoping that a few days of Yoga and meditation will help my lower back to feel better. We had our rental car upgraded as well as our room. Originally, we had a studio and now, we have a two bedroom suite! Credit for both upgrades goes to my lovely wife.

I am happy to report that I am feeling so much better! My gate has improved and I am less rigid! Today, I walked around in flip flops!  I wish that my arm swing was better and that my lower back did not hurt so much, but this may be the new normal and if this is the case, I can live with it. I am the luckiest guy with Parkinson's Disease! 

Special thanks go out to friends in South Carolina for their emails, thoughts and prayers.  They are greatly appreciated. One of my few good qualities is that I remember almost every kindness shown to me. I am truly greatful to everyone who has ever helped me out. Here is a story to illustrate my point. In the Spring of 1991, I went to ACPA in hopes of finding my first professional position. We ( the USC contingent) were all broke and I think that 5 of us shared a room, which was a meeting room complete with a board table. The conference was a bust for me and to make matters worse, I had spent every penny that I had and maxed out my only credit card. When we got to the lobby to check out I had nothing left and could not even tip the bellman. Michael West graciously came to my rescue and turned the bellman' glare into a smile. Thank you Michael, I owe you one. (In fact, I owe you many.)

Someday, I will post about how I also remember every stupid, cruel or thoughtless thing that I have ever done, but that may take a little more courage than I have today.

“One's dignity may be assaulted, vandalized and cruelly mocked, but it can never be taken away unless it is surrendered.”

MICHAEL J. FOX

Good News

Day 119
Today is the 110th day of taking a full dose of Azilect and the 2nd day of taking a 1.5 mg dose of Pramipexole (after 68 days on a .75 mg dose).

In the way of a confession, I now must admit a few things which I have previously denied. What I originally told myself was aging is most likely some degree of masking caused by Parkinson's disease. People have commented that this appears to have improved since I have begun taking medication. In addition, as someone who dreamed of being an announcer, I was disgusted to hear how low and slow my voice has gotten. My point is that if you are a friend or family member who has been dancing around these subjects, it is now okay to be direct with me.

I arrived at NYU at 8:35am for a 9:00am appointment and the intern took me in to check my vitals at 8:45! Thank you NYU! My doctor was a little late because her train was held up due to a "suspicious package." Just another day in NYC.

Apparently, my gate has improved by 2 points and my is rigidity is also better (by 2.5 points). I am not certain how this point system works, but I understood the doctor (Jori) when she said, "You are walking like a completely different person!" I did ask about further improvements in my gait and arm swing and we decided to wait and see what happens after a few more weeks on the 1.5 mg dose of pramipexole.

We discussed the possibility of some upcoming clinical trials including the one using the leukemia medication I discussed in yesterday's post. I asked, "Do you have to be further along in the progression of the disease to take part in the clinical study?" She informed that this is not the case. I also answered some questions for research study (which I will complete over the phone this morning).

When asked if Kate had any questions my wife responded, "We have been told what the best case scenario is. What I would like to know is what is the worst case scenario?"  Jori responded, "In John's case, I do not think we are looking at a worse case scenario." Kate responded, "If we were, what would it look like?" Jori's answer was, "20 years down the line he may need a cane or walker." (In fairness, Kate only heard the doctor say walker). Jori reiterated that I was responding well to the medication and at some point, we may have to switch to levodopa. I asked about the dyskinesias associated associated with the use of this drug. The doctors answer was, "While long-term use of levodopa does cause dyskinesias which seem frightening to others, most patients, believe that the results are worth it." Jori also reminded us that I would be a good candidate for DBS surgery. The techniques used to perform this surgery seem to be improving daily and according to my doctor, in many cases the surgery does improve the patient's gait. 

I will close out this post with a few good words about the hospital and my doctor. The level of service provided by the NYU Medical Center is simply amazing. It is possible, that this is simply the level of service that the medical profession should be providing and that years of neglect have caused us all to lower our expectations. Dr Jori Fleisher is truly the best medical professional that I have ever encountered. In Kate's words, "I feel better knowing that you are in such good hands."

Tomorrow is the big day...

Day 118
Today is the 109th day of taking a full dose of Azilect and the 1st day of taking a 1.5 mg dose of Pramipexole (after 68 days on a .75 mg dose).

Tomorrow is my second appointment with the  Movement Disorder Specialist. My doctor offered to allow my wife to attend this appointment and Kate is going to take her up on the offer. At my first visit, the doctor told me that the best case scenario is that they get my medication adjusted to the point that I could be symptom-free for the rest of my life. Kate is preparing some questions for tomorrow and her number one question is, "Now that we know the best case scenario, what is the worst?" I do not have much to add on this topic other than to indicate that I am also interested in the doctors answer.

Now that I have gone from .75 mg of pramipexole to 1.5 mg, I am hoping for better results. For example, while my arm is now hanging down at my side, as opposed to being continuously flexed and glued to the right side of my body, I would like it to swing more naturally. I would also like my shuffling gait, which has improved, to go away entirely. As I have mentioned several times prior in this blog, at least my toes have stopped curlinging under! I also seem to be gaining back my sense of smell. Could this be from the drugs? As far as muscle tightness is concerned, my lower back and glutes are killing me. I am wondering there is anything that can be done as far a needling or acupuncture that my insurance would cover. The above issues will all make for good questions tomorrow.

On other news, a new study provides some evidence that a drug used to treat leukemia may actually reverse the effects of Parkinson's.

"The study marks the first time a therapy appears to reverse the “cognitive and motor decline in patients with these neuro-degenerative disorders,” Fernando Pagan, a neurology professor who helped oversee the trial at Georgetown University Hospital, said in the statement."

I personally, am not holding out hope for a cure. I think that it is much more realistic to hope for a new drug that will provide symptom relief and therefore, this study seems very promising to me.

 More tomorrow…

Unselfie

Day 108
Today is the 99th day of taking a full dose of Azilect and the 58th day on a full dose of Pramipexole.

"Giving Tuesday" is December 1st.  The premise behind this is simple, between today and "Giving Tuesday", make a small donation to the charity of your choice and change your profile picture to an unselfie!

The Unselfie above is in honor of the two friends from the NYC swing scene that I referenced in an earlier post.

I do not have much to post about today and not much has changed in my condition. On Tuesday, November 24, I have my second visit with the Movement Disorder Specialist and soon I will begin taking a double dose of pramipexole.

For now, I leave you with this Michael J Fox quote:

"One's dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered."
‪

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.