Day 8

It is the little things...

Today is the last day that I have to take 1/2 tab of Azilect! I am hoping to see results in a couple weeks from tomorrow when I start taking the full dosage.

I think that it is the little things that drive me crazy about this disease. Having to use two hands to take my cell out of my pocket, spilling coffee on myself while trying to open my office door with one hand & not being able to wear flip flops.

Well, my family and I woke up in our own home today and that is good news!

'Cause you can't jump the track,
We're like cars on a cable
And life's like an hourglass, glued to the table
No one can find the rewind button, boys
So cradle your head in your hands

And breathe, just breathe
Oh breathe, just breathe

There's a light at each end of this tunnel
You shout 'cause you're just as far in as you'll ever be out
And these mistakes you've made, you'll just make them again
If you only try turning around

Breathe (2 AM) 

Anna Nalick

Day 7

4:15 am: Woke up, took another half tab of Azilect and headed into Manhattan to teach my two spinning classes. Good thing that staying active will not be a problem!  Afterwords, I met up with my friend Monica and her staff at the Manhattan School of Music http://www.msmnyc.edu. We chatted about student involvement & I offered some advice.  I am really not certain that my advice helped at all, but it was nice to see her and meet her staff. I will right it off as a mental health day!

We moved back into our home today! This relieved some stress but caused a little as well. Overall, it was far more positive than negative.

I stumbled across this and found it to be helpful.
Guide for the Newly Diagnosed 

There is so much misinformation out there and I wonder if I should be more worried. For now I am taking my therapist Nicole's advice, "If you doctor does not seem worried & if she does not, then neither you should you."

Anxiety, Depression and Parkinson's...

Day 6 (since diagnosis)

Woke up and took another half tab of Azilect...


About the same time that my symptoms appeared, my anxiety level went through the roof. I actually considered asking a psychiatrist to prescribe something.

This morning, I was so anxious that I was almost paralyzed. I was not a nice person to be around and must apologize to my wife and son. I am hoping that when my dopamine levels increase, much of this anxiety will go away.

Day five (since diagnosis)

Yesterday, I sent an email to certain friends and family members letting them know about my condition.  While I generally prefer telephone or face-to-face conversation, this time I opted for the control that email allows. When I say/write control, I am referring to the ability to get the entire story out prior to receiving any verbal or nonverbal reaction.  I have decided not to burden my parents with this information because I will be symptom-free for the next 30 or 40 years.

This was day four for medication and I cannot wait for the week to go by so that I can start taking full tablets. Yesterday, I also I also signed up for a program with a company called Opus that will reimburse me for much of my deductible for Azilect. With this program, my deductible will go from $107. to $15.00 (every three months). It is "drug company" money, but I will take it.

 I remain hopeful.

Monday, July 27, 2015

Bad things happen in threes

I took another half tab of Azilect with some iced coffee this morning and later I would schedule my first physical therapy appointment.

I flashback several weeks ago in which I bit down on a pit-less olive and found a pit!   On Wednesday, June 24,  I was in Charlie's office. Charlie has been my dentist for over 20 years. "I am afraid that the tooth is cracked in half down the middle John," Charlie said. (That is number one.) I am off to the surgeon for an emergency extraction, which will be followed in four months by surgery for a dental implant. I get halfway out of his office, look over my shoulder and see Charlie headed towards me with a concerned look on his face. "John I  have known you for over 20 years, so I'm just going to say this. Something is seriously wrong with you. You have lost weight and not in a good way, something in your voice has changed, you are walking in an odd way and your right arm does not swing naturally." I explained to Charlie and I had been going to physical therapy for frozen shoulder and that the way in which I was holding my arm was probably throwing my gate off. "You may have had frozen shoulder, but the rest of that is just bull shit." He asks if I have a neurologist and when I answer yes, he says, "Go back to her and tell her you have a friend who is a doctor and he feels that something is seriously wrong with you." I get home and my head is throbbing along with my jaw, so I pop an oxy in my mouth and float  for a little bit.

In a few days, I am off to Delaware County, New York with my wife and son to spend a week swimming in a pond and watching the cows. We get there, unpack and sit on the couch for a moment when the phone rings. It is our downstairs neighbor who explains that there was water leaking into her apartment from above. (That is number two.) To make a long story short, we soon find out that the leak was coming from the apartment above ours and end up staying in the sublet while a construction crew rips our place apart, removes the mold and puts it back together again.

If you have been reading this blog then you know that the next thing that occurs is the Parkinson's diagnosis (That is number three.) 

The frozen shoulder injury which managed to mask some of the symptoms of Parkinson's was  probably caused by Parkinson's in the first place! This is not uncommon in Parkinson's patients. I am a little bit angry about the lost and time and the wasted visits to the shoulder specialist and his misdiagnosis, but "when you have a hammer…"

Sunday, July 26th,

Wake up, take the half dose of Azilect left from the day before and wash it down with some coffee. Next week, I will begin taking one full pill instead of half.  As of Friday, I am weighing in at 142lbs. Somehow, in the last six months, I lost 13lbs.  The least that I have ever weighed in my adult life was 147lbs, but that was when I was teaching eight spinning classes and taking three trapeze classes a week. I look in the mirror and I know that I am not as "cut" as I once was and I wonder if this weight loss is related to Parkinson's disease?  

Saturday, July 25th
I wake up split a dose of Azilect in half and wash it down with coffee. I may be in denial, but I feel hopeful. I cannot wait for my current symptoms to go away.

Friday, July 24, 2015:
I am diagnosed with Parkinson's disease.  I cried a little bit and then I asked the most pressing question, "Can I pass this on to my son?"  The doctor answers, "Your son has the same chances of getting this disease as anyone in the general public and no more." 

When I walked into the NYU medical center, I knew that the prognosis would not be good. I was holding my right arm and awkward way, my right foot felt like it was stuck to the floor, people kept saying "what?" after everything I said and my handwriting was getting smaller.

Flashback:
The neurologist I was seeing for my, "carpal tunnel" had blurted out, "these are all the classical signs of Parkinson's" when I told her about my symptoms. What the fuck I thought, she keeps me waiting for over two and a half hours and then just blurts out "Parkinson's" without any feeling or emotion. She then follows up with, "but I am not qualified to say..." So two hours and thirty-seven minutes later (that's right, after blurting out "Parkinson's" she spends less than 10 minutes with me), I leave the neurologist office with a script for movement disorder specialist.

The next day, I call NYU and try to get an appointment with a movement disorder specialist. I am told at the nearest appointment is over a month away. So I go back to the web and after hours of searching, the Michael J Fox website and the national Parkinson's website I find a specialist at NYU medical center who has an opening within two weeks. I hate to be trite but, the next two weeks felt like the longest two weeks of my life.

Back to the appointment:
The doctor spends over two hours with me. This is the more time that anyone in the medical profession has ever spent with me. The diagnosis is garden variety Parkinson's disease.

The doctor says,
"You do not deserve this. Nothing you did made this happen. You will never be as bad as Michael J Fox is now. You will probably never suffer from any cognitive impairment.  If we keep changing your medications up you can live a very long, symptom free life. With medication, the symptoms you have right now will most likely dissipate. You mentioned that you knew something about deep brain stimulation surgery and I think you would be a excellent candidate for this, but that is a ways off for now. You should start physical therapy soon as you are ready This is a disease that can be managed around your life and not a disease that you manage your life  around."

I get about a months worth of samples of Azilect, schedule my next appointment.  I tell my wife and inform the handful of family and friends.  I may be in denial, but somehow, I feel lucky.