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.

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!
 

23 and Me

Day 66

Today is the 57th day of taking a full dose of Azilect and the 16th day on a full dose of Pramipexole.


The Pramipexole is beginning to kick in and I am feeling better.  My right arms seems to be swinging in a more natural way and my gait has improved. Using my right arm, however, to write or type still feels awkward and occasionally, I do shuffle a bit when I walk. All in all though, I am making good progress.

My test kit from 23 and Me arrived yesterday. This is a company that informs you about your lineage/ancestry and will help you find lost relatives. The cost generally is $99, but it is free for anyone with a Parkinson's diagnosis. The company is doing Parkinson's research and apparently making some headway.



Paul Cannon, PhD from 23andMe Parkinson’s Community:

"The deal with Genentech is a collaboration to whole genome sequence approximately 3,000 individuals with Parkinson’s or with a first-degree relative with PD. (The ratio is yet to be determined.) It’s a unique opportunity to learn more about the genetics of people with Parkinson’s disease and hopefully identify novel targets and biological pathways."

Once the kit arrives, all you have to do is spit into a little vial, put it back in the box and mail it out. Shipping is prepaid, which makes it pretty simple. The reason that I described the testing method (other than to gross you out) is that it took me several attempts to fill the vial. This proves that I do not have sialorrhea, the excessive saliva symptom that many Parkinson's patients suffer from.

While it will be interesting to learn more about my ancestry, I am not assuming that hidden relatives will show up on my doorstep.

Goodbye for Now PT!

Day 61

Today is the 52nd day of taking a full dose of Azilect and the 11th day on a full dose of Pramipexole.

I said goodbye to my PT today. Over the course of four sessions, I learned enough stretches to help keep my flexibility along with excercises to improve my arm swing and balance. OT is over as well, although there may be one Assistive Technology session in the future. I am happy that I will not be taking a half day (sick day) on Fridays any more.

From now on, I take my meds, do my exercises and stretches and see my doctor once every three months. This is the part of the post in which I do NOT use some trite catch phrase with positive affirmations...

Fox Insight Program

Day 60

Today is the 51st day of taking a full dose of Azilect and the 10th day on a full dose of Pramipexole.

Yesterday, after watching the Fox Foundation Webinar, I signed up for the Fox Insight program. It is

"an online research study to gather the world’s largest collection of data about life with Parkinson’s. Whether you have PD or not, your information – held safe and confidential"

Basically, you answer a questionnaire about your health, height, weight, symptoms and medications and check in every 90 days so that the online system can track your progress. This data, minus your personal info, can potentially be shared with hundreds of researchers.

I am also on the shortlist for next year when the Fox Insight Wearables program comes out with a device for the iPhone! Basically, it is watch that does everything that the Apple watch does, but also sends info on your medication, gate, heart rate, etc in real time to hundreds of researchers. This has incredible potential to improve the lives of Parkinson's patients. Imagine being able to record the improvement of a patients arm swing after X number of days on a particular medication? I am really excited about this!

Today, my right arm is swinging more naturally and other than feeling a little jittery (plus another inconvienant, but not really unpleasant issue) there are no troublesome side effects.

As a bonus, I am finding that since my diagnosis, I have stopped sweating the small stuff like when the schedulers at NYU fcuk up my appointments.

"Got to pay your dues if you wanna sing the blues. And you know it don't come easy," Ringo Star

Day 58

Today is the 49th day of taking a full dose of Azilect and the 8th day on a full dose of Pramipexole.

On the way to work today I began listening to  Always Looking Up: The Adventures of An Incurable Optimist by Michael J Fox. I was struck by his positive attitude, but based on the work that he does with his foundation, I was not really surprised. He wrote about his dystonia causing his feet to curl under and having to put a pair of loafers on just to walk to the bathroom in the morning.

I now remember how my feet kept curling under making it impossible to wear flip-flops this summer. At one point, I was at the park with my son at a place called the "Splash Zone." It is essentially a giant sprinkler. The water was up to my ankles and my toes just kept curling under.  If this has never happened to you, it is maddening. I got out of the water, picked up my cotton slip on sneakers and wore them in the sprinkler, which made the situation with my feet more bearable. Back to the present, somewhere around week three of taking my Azilect this problem went away. It somehow just slipped by me unnoticed. Inspired by Michael J Fox, I realized as I got out of the car and walked toward my office that I had something to be grateful for! So I am taking a moment to feel good about the way my treatment is progressing and while the warm weather is still with us, I must try to wear flip-flops at least once.

While I recognize and am grateful for the fact that I could have a much worse disease, I am assuming that life with Parkinson's will not be easy When I think about my life, however, I realize that it has never been walk in the park. I was an extremely unhappy child (most of this was my fault) and I started drinking at age 13 and just kept going until I was a full-fledged alcoholic (all of that was my fault). I have been clean and sober for over 15 years and but, "...you know it don't come easy." I have never been the smartest person academically, but somehow I managed to earn a Masters degree, write a dissertation and earn a doctorate. There are no guarantees in life. My medication may eventually fail in suppressing my symptoms, the latest brain surgery may be of no help to me and overall, I could get worse. Looking back on my life, I can remember that there was no guarantee that I would pass my certification exam (for the second time) and be given permission to write my dissertation. I did pass, however, due to a great deal of hard work. What I am trying to convey here is this is the way that I will deal with Parkinson's. In fact, it is the only way that I know how. I will take my medication, do my stretches and exercises and see my doctor every three months. I will keep a positive attitude and remember that, "It don't come easy." (For the record, yes, I realize that quoting Ringo Starr is extremely cheesy.)

For right now, however, I am just grateful that my toes are no longer curling under.













 

Day 57

Today is the 48th day of taking a full dose of my Azilect and the 7th day on a full dose of Pramipexole.

It could just be my imagination, but my right arm feels looser and my gate seems a bit better. Brushing my teeth with my right hand still feels awkward and I still instinctively reach for things with my left hand. Well, maybe  I will see some additional changes in two weeks, but I have heard that Pramipexole works differently with different people and can take up to 3 months to really kick in.

I remain patient.  

PT & OT Finishing Up

Day 55

Today is the 47th day of taking a full dose of my Azilect and the 6th day on a full dose of Pramipexole.

Today, I went to my last OT session as well as a PT session. My last PT session is next week. I will also go to my first and only Assistive Technology (AT) training for the Dragon software package.
I will be glad to have some of my time and sick days back, but I will have to remember to do my excercises and stretches.

Denied for the Transcranial Magnetic Stimulation (TMS)

Day 54

Today is the 46th day of taking a full dose of my Azilect and the 5th day on a full dose of Pramipexole.

Unfortunately, my application to take part in the Transcranial Magnetic Stimulation (TMS) trial was denied. It was denied for two very good reasons. First, I have only been on the medication Pramipexole for five days and it is preferred that research subjects be on medication for at least 30 days prior to taking part in the study. Second, my symptoms are too mild and it is too early on in the progression of the disease for me to take part in the study. I am taking this is good news. Hopefully, if they get my medication adjusted correctly, my symptoms will always be too mild for me to qualify for the study!

On a completely different note, it has been nice receiving email, text messages and phone calls from friends in the South and I hope that this continues. It is always nice to talk with friends when life throws you a new challenge.

Transcranial Magnetic Stimulation (TMS)

Day 53

Today is the 45th day of taking a full dose of my medication (Azilect) and the 4th day on a full dose of Pramipexole.

A few weeks ago,  I filled out an profile on Fox Finder, which is an online program designed to place patients in clinical studies related to Parkinson's disease. (The Michael J Fox Foundation is really amazing.) Today I received a phone call from a research center doing a clinical trial of Transcranial Magnetic Stimulation. They are reviewing my medical records and will let me know tomorrow if I am accepted for the study. Please keep your fingers crossed!

TMS is:

“... applying strong magnetic field outside the skull, without invasive intervention. Special coils that generate magnetic fields are just powerful enough to penetrate the skull and may change the way that the brain responds to stimuli,” 

Research increasingly shows that a new treatment, Transcranial Magnetic Stimulation (TMS), a non-invasive method of stimulation of the brain, has the potential to help control motor symptoms of PD  non-invasively.

Yes, I know that it sounds/looks hokey and the research results on this method are mixed at best, but it couldn't hurt. When it comes to the field of medicine, changes come slowly. Keep in mind that washing your hands before examining a pregnant woman was once a radical concept! Two things appeal to me about this method. First, it is noninvasive and second it is designed to work with the motor symptoms of Parkinson's disease. My three main symptoms include shuffling gait, micrographia and bradykinesia which are all motor symptoms.

Do you think that I should ask for a trim while I am there?

Hopefully, I will have something positive to post about tomorrow.

And just like that...

Day 51

Today is the 44th day of taking a full dose of my medication (Azilect) and the 2nd day on a full dose of Pramipexole.

And just like that, Parkinson's Disease was gone! (For forty minutes anyway!) Watching my four year-old son fly a kite for the first time was the the best medicine!

How does that make you feel?

Day 48

Today is the 41st day of taking a full dose of my medication (Azilect) and the 6th day on a half dose of Pramipexole. My assumption is that I will not see effects until 2 to 3 weeks from the day that I begin to take the full dose. I am very hopeful because I just cannot accept that my current condition will be the "new normal."

Warning: My train of thought has always been a roller coaster and today's post jumps around a great deal.

How does that make you feel?

Last night my therapist, Nicole, asked me,
"How do you really feel about the diagnosis and having Parkinson's?" 

 I responded,
"Well, I am relieved that my symptoms are not worse and that the prognosis is pretty good and…"

  Nicole cut me off and said/asked,
 "You seem to be more honest in your blog, so other than the prognosis, which is pretty good, how do you really feel?"

 I replied,
 "I am fucking angry. Yes, I am pretty lucky for someone with Parkinson's, but I still have Parkinson's. It sucks. It is a major inconvenience and the cause of way too much stress in my life. I go out of my way to plan and prepare in order to avoid stress and anxiety, because I do not do well  with either and now, I have a disease in which one of the actual physical symptoms is anxiety and it sucks. This disease is expensive, time-consuming and completely inconvenient."

 So if you were interested in how I actually feel, there it is. 

For the past year , I have had trouble falling back to sleep and after I woke up and this problem appears to be getting worse. Apparently, this is a common symptom of Parkinson's disease. I hope that the medication will eventually help with this because people used to be jealous of my ability to fall asleep anywhere anytime.

Another thing that I have blogged about prior is lower back and butt pain. I have always worked out and I have never had lower back problems and while my muscles have been sore in the past (especially after a trapeze class), my glutes never were. Below you will find a quote on lower back and glute soreness from a spinal health website.

"Parkinson’s Syndrome Sufferers may present with various combinations of back, buttock and leg pain, numbness and muscle weakness, Symptoms are often aggravated by an abnormal asymmetrical gait arising from loss of spatial awareness muscle spasm and loss of limb control."

It reminds me of that old joke, "Does your face/ass hurt...  ...because it's killing me!

This morning I contacted NYU and left a message indicating that I was interested in participating in the Transcranial Magnetic Stimulation study

Transcranial Magnetic Stimulation (TMS). TMS uses a small (palm sized) powerful magnet to generate a localized magnetic field. This magnetic field passes through the skull and into the brain without pinching the skin; it interacts with brain cells and has the potential to change the function of these cells and/or their connections and possibly improve Parkinson’s symptoms. 

Update: next Friday, September 18, I will receive training on Dragon software at NYU. Currently, I am using it only for dictation, but I want to learn how to use it to open files, save documents and enter passwords because using the mouse is  is way too frustrating.

I want a new drug - one that won't spill. One that don't cost too much, or come in a pill.

Day 47

Today is the 40th day of taking a full dose of my medication. Today is the 5th day on a half dose of
Pramipexole. I am looking forward to Saturday so that I can begin taking the full dosage. 

 

Today, I volunteered for three studies on Fox Finder. This is the online tool that links volunteers with research studies related to Parkinson's disease. Two of the studies are web-based and observational in nature and the third is for trials for a new drug. I only signed up for the drug trial because it is taking place out of NYU where I receive treatment for Parkinson's as well as OT and PT. Of course, before I start taking anything, I will check with my doctor.

Tonight, I am back in therapy after a three-week break. I look forward to seeing Nicole and updating her on my progress.

 

Billy Connolly

Day 46

Today is the 39th day of taking a full dose of my medication.

I am keeping today's post brief. Here is a clip of Billy Connolly from a few years back on the Conan O'Brien show. The talk about Parkinson's disease starts 1 minute and 20 seconds into the clip.

 

 I am happy that I do not feel the urge to gamble.

PD Smart Watch and App?

Day 45

Today is the 38th day of taking a full dose of my medication.

 About a year ago, Intel teamed up with the Michael J Fox foundation to produce a PD smart watch and app.  Unfortunately, this seems to have stopped at the pilot study.  This is a shame because the idea seemed to have so much potential.  Imagine being able to see if your arm was swinging more naturally as you increased, added or changed medication. Now imagine what could happen if doctors and patients had access to these changes in others.  We could see, for example, that adding a dopamine antagonist aided 24% of patients in improving their gate or the natural swing of their arm(s).

There is some indication  that exercise slows the progression of Parkinson's disease. With this in mind, you would think that there was money in Apple or Fitbit developing a product for Parkinson's that would be paid for through patient's insurance.

I get cold easily and lately, it seems to be getting worse. There is some indication that people with  Parkinson's disease  often feel too hot to cold.  If you hear or read anything about this as a symptom, please let me know.