One Year

"...every breath that you take is a miracle..."

Switchfoot

So, a year has gone by since the diagnosis. Many things have happened since then. The drugs
are working, but so are the side effects. My gate is pretty good, my right arm is not so stiff, and
my toes no longer curl under. I have done a biopsy, a genetic study, completed more online
questionnaires than I can count and I am currently taking part in the Fox Insight study.

My parents both became octogenarians! My mom's stage two cancer diagnosis quickly changed
to stage four, but surgery and Ibrance, the newest miracle drug, will keep my mom going for
many years to come. Avoiding traditional chemo and living for many more years is good news,
but my father is still very depressed. I get, I really do, my mom is the love of his life and the best
thing that ever happened to him and this was a close call.

Ocean, now 5, is becoming quite the soccer player and currently fascinated with masks, dogs,
designing his own games and mazes and with origami. Kate has been completely supportive and
really just wonderful. Not only does she have to put up with me and my tangential roller coaster
train of thought, she now has to deal with me on PD medication. In general, I am surrounded by
understanding family and friends, so I consider myself lucky.


Last week I spent three days training to be a Research Advocate with the Parkinson's DiseaseFoundation (PDF). In an NJ hotel and conference center, I joined patients, spouses, medical
doctors an researchers to learn about PD, advances in treatment and how to critically review
published research. My doctor spoke about her project to bring care and kindness to shut in
New Yorkers with PD. I was reminded by more than a few people present how lucky I was to
have such a great doctor. My fellow parkys and I had a range of different symptoms in varying degrees of severity. I felt a little guilty when answering yes to questions like,

"Are you still working?" or "Are you driving your own car?"

Ultimately, I was reminded that I have nothing to complain about.

Back at work, a colleague from the central office pointed out that I was not just the advisor the
the Committee for Disabled Students, I was also a member. I quickly pointed out that PD was
only a disability when it became debilitating and that I was not there yet and may never be.
Please do not misunderstand me, I am not embarrassed to have Parkinson's nor would I be
ashamed to be disabled, I just cannot put on the suffering of others like a coat. I may end up
with a cane in 20 years and I do not look forward to having another accessory to match with my
bow tie, pocket square, lapel flower and cuff links!.

Ultimately, a year with PD has taught me that I am lucky. My symptoms are mild and I have
loving and supportive family and friends. I have a good career and an intact sense of humor. I
have a life to live and PD is just part of it. Now please excuse me while I take a hand full of pills
and swim in a pond! I will leave you with something a fellow parky recently said to me,

"Any morning you open your eyes and see the ceiling is a good morning!"

"The wound is where the light shines through"

Switchfoot

Good News, Bad News

Good News:
My medication is really working effectively. Since being diagnosed, I went from a 16 on the Parkinson's scale to about 12. People who know that I have Parkinson's have commented on  the improvement in my gate and the lack of rigidity in my right arm.

Bad News:
The side effects have not diminished. These are very personal side effects, so if you are a friend (and really bored) call me and ask. For those that keep asking: No, it is not E.D.!
 
Regardless of the drugs, exercises and stretching, my lower back still hurts. The hardest part of my day is often getting out of the car in the morning. Note to self: "your next car will not be a Honda Civic!" My good friend Sam informs me that this is old-age, but somehow, I can tell that it is the Parkinson's.

Bad News:
On April 20, my soon to be eighty-year-old mother had a mastectomy. while the doctor informed my mother and father that she did not think it was in the lymph nodes, after 3 1/2 hours of surgery, she did not need to come out to tell us it was.

Good News:
At her last visit, the doctor informed her that she is healing very well.  She will definitely need radiation and assorted pills, but after the meeting with the oncologist, she will have to decide if she wants to undergo chemotherapy. My mother and father have requested that I attend the meeting with the oncologist and my younger brother wants to go as well. If chemotherapy is recommended, the question that my mother will have to wrestle with is "How long can I live without it?" Having this question answered, may make it easier to decide.

In the category of good news, my mother has had great life so far. She has lived 80 wonderful years, spending the majority of it with a man who loves her greatly. I can honestly say that I have never seen anyone love anyone like my dad loves my mom.


"That's all folks!"

I am well. How are you?

Day 212
Today is the 203rd day of taking a full dose of Azilect and the 95th day of taking a 1.5 mg dose of Pramipexole (after 68 days on a .75 mg dose).

When people who know that I have Parkinson's, ask "how are you?" I always respond "I am well. How are you?"  I do this because I am actually feeling pretty good.  The cold weather, however, seems to counteract my medication. In the fact, the colder it is, the stiffer my right arm becomes.

Last week, I was at Frost Valley, which is a great YMCA camp in upstate New York. You basically get pretty nice accommodations, three meals and four activities a day for very reasonable rate. My wife, son, and I along with a friend and her daughter, did some snow tubing, archery, hiking and rockclimbing. When rockclimbing, however, I was reminded that I still do Parkinson's. My left arm was working great as well as my right and left feet. In order to keep my balance, I was able to quickly change my left hand from handhold to handhold, but when it came time to move my right arm in the same way, I failed. There is of course a harness, so while I failed I did not fall.  The way I got around the slow reaction time in my right arm was to make two moves instead of one. In other words, if under normal circumstances, I would have reached up quickly with my right hand, I reached with my left for that same handhold first and then changed to my right in a slower more controlled movement and then place my left hand back on its original handhold. I estimate that this increase my climbing time by about 30%. Is this the end of the world? No. In fact, one could surmise that the fact that I could climb the rock wall at all was what was important.

So if you ask, "how are you?"

The answer still is, "I am well. How are you?"

A Toast To Luck & the Swingers and Shakers Club

Day 165
Today is the 156th day of taking a full dose of Azilect and the 48th day of taking a 1.5 mg dose of Pramipexole (after 68 days on a .75 mg dose).

2015 was a lucky year for me. It was not, however, without its challenges. Construction in our home went on for far too long and then, of course, there was the pit in a pitiless olive that cost me a tooth and several thousands of dollars for an implant. Next came the crazy neighbors who knew that they had a leak and neglected it causing our newly renovated home to be ripped apart for mold removal. Finally, there was the Parkinson's diagnosis.

You may be asking, "where is the luck in all of this?" Well, construction ended, insurance paid for the mold removal and the broken tooth caused me to go to the dentist who convinced me that something was neurologically wrong with me. So what about the Parkinson's diagnosis? I will not suffer any cognitive impairment, my medications are working and the worst case scenario is that in 20 years I may need a cane.

On Christmas Day, our home was filled with 13 friends and family members. I have a career that brings me joy and fulfillment. I work with and for people who I admire and respect and I have a wife and son that I adore. Therefore, I am not just the luckiest guy with Parkinson's Disease, I am the luckiest person I know.

So I raise my glass of seltzer and drink a toast to luck. "May 2016 bring us as much luck as 2015....   ....without all of the challenges!"

Swingers & Shakers Club

On New Year's Day,  I went to my friend Amy's place for her annual New Years Day party and met up with my two friends with PD. We are calling our group the Swingers & Shakers Club since we all used to go out swing dancing. More on this as it develops.

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…