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."
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