Kirk's Blog

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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

Parkinson’s and Pain

If you have PD and are experiencing pain, you are not alone.  According to the Parkinson’s Foundation (PF), 85% f people with PD “report pain as a troubling symptom”.  PF goes on to state:

“Pain can be classified as nociceptive, which relates to tissue damage, implicating the pain receptors in the skin, bones or surrounding tissues; as neuropathic, indicating pain arising in nerves; or as a mixed pain syndrome involving both nociceptive and neuropathic pain. Your Parkinson’s specialist, working with a pain specialist, may select treatments based on the nociceptive versus neuropathic classification.

In Parkinson’s, most pain experiences are nociceptive — seeming to result from tissue that is injured or has the potential to be damaged. Causes include persistent tremor, muscle rigidity, dystonia, musculoskeletal injury (i.e., sprains, bruises, bone fractures resulting from a fall etc.), burns and inflammation. The pain is typically well-localized to the affected body part; it may fluctuate with medication dosing. Pain caused by dystonia can be diagnosed when there is visible twisting, cramping or posturing of the painful body part. The most common areas of the body where people with Parkinson’s experience pain are the neck, upper back and extremities.

In Parkinson’s, neuropathic pain is less common, and includes conditions not directly related to PD, such as shingles, cancer pain, carpal tunnel syndrome, diabetic neuropathy, and peripheral neuropathy. The pain may present as burning, numbness and tingling, sharp sensations, or electric shock qualities. Pain due to nerve or root disease is most commonly caused by akathisia, an extreme inner restlessness.”

Pain had not been a significant problem for until a few months ago.  Following my final surgery for a detached retina in my left eye in May, I was unable to engage in much physical activity.  The first pain I noticed was in my right groin area.  I have had this type of pain in the past with hernias (on both sides).  However, I had hernia surgery on that side a few years ago.  I have also had peripheral neuropathy for about seven years (numbness in feet and legs plus cold feet and hands) and wondered if that could have anything to do with it.  After visits to both my movement disorder doctor and PCP, I had imaging that revealed a hernia in my LEFT side and significant arthritis in both hip joints.  My PCP said that the groin pain on the right side could be due to the arthritis and referred me to physical therapy (PT).

Before I had my first PT visit, I started to have worse pain in my right shoulder.  So my PT visits to date have focused on that problem.  The therapist is pretty sure the problem is inflammation in the tendon and is having me do exercises and alternate hot and cold treatments,  The pain is worst when I get up in the morning, which apparently could be arthritis.

Meanwhile, I have scheduled hernia surgery for early December.  Then, because nothing else was going on, my DBS battery decided it was time to be replaced.  So I am having THAT surgery next week.

On top of THAT (when it rains it pours) I jammed my right knee jumping off a rock (don’t ask).  I didn’t have the nerve to tell the PT about that, but thankfully it seems to be healing.  I am also starting to detect the type of pain that came out of nowhere (no apparent cause) in my left shoulder.

I have been attempting through all this get as much exercise as possible by walking and light workouts at our community recreation center (aerobic, strength, and stretching).  I get very stiff if I don’t stretch and normally take 800 mg of ibuprofen every night, which I can’t do for the next week due to the aforementioned surgery.

My movement disorder doctor has researched the topic of medical marijuana quite thoroughly.  His comments corroborated articles I have read that reported this “medication” is effective for reducing inflammation and can help with sleep and constipation (both are a BIG deal in my world).  Learn more about this subject at http://www.parkinson.org/understanding-parkinsons/treatment/complementary-treatment/medical-marijuana-and-parkinsons-disease.  I am going to try it.  I think I am correct in saying I can save 40% with paperwork I will receive based on my doctor’s approval.  He also says it is important to buy from a reputable (your guess is as good as mine) and continue to use the same one to increase your chances of product continuity (it can vary from place to place).

That’s all I have to say about that.

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Kirk Hall

An Unexpected Phone Call

I was sitting on my patio with my wife reading a book, listening to our two water fountains and enjoying our “meditation garden” when the phone rang.  The screen showed that it was from UC Denver (my hospital for neurology).  I also have a battery replacement surgery scheduled for my DBS and am working with a physical therapist due to pain in my shoulder and hip.

To my surprise, it was the PA for my movement disorder doctor (Dr. Benzi Kluger), Julie Berk.  I met Julie years ago (maybe 2010) when she was assisting Dr. Kluger with some research I was involved in.  When I had my DBS surgery, she was the specialist who adjusted the settings on my stimulator.  After I wrote my first children’s book, Carson and His Shaky Paws Grampa, I did a number of presentations about DBS that also gave me an opportunity to talk about the book since it told my DBS story through my grandson’s eyes.  The neurologist who participated in my DBS surgery was scheduled to speak with me, but she was out of town, so Julie joined me to provide a medical perspective.  I remember seeing her at various Parkinson Association of the Rockies (PAR) events in the following years.  It was always good to see her and my wife and I thought of her as a friend.  We lost contact when she switched to another department to broaden her experience.  Then, earlier this year, she rejoined Dr. Kluger as his physician’s assistant.  I learned that she was very interested in his palliative care work and wanted to get involved.  Anyway, to make a long story less long, Dr. Kluger got Julie involved with my appointments and I began meeting with her as a first step (she would then confer with Dr. Kluger and decide on a course of action regarding that particular appointment).

About a month ago I became very concerned due to a variety of symptoms occurring at once.  I was trying to understand what was going one and began to think that I was dealing with some kind of parkinsonism.  I sent an email to them that shared my concern and speculation and they scheduled an appointment for me with Julie.  Linda and sat with her for an hour or more and I poured out all my angst and concern on Julie.  I was quite agitated and Julie was concerned because she had never seen me this way.  However, she did a good job of reviewing what had been going on over the last few months including any changes.  She picked up on the fact that I had increased my dose of Rytary, my primary PD medication, to the original prescription without discussing this with Benzi.  In fairness to me, I had decreased the dose shortly after starting with Rytary a couple years ago based on my reaction to it, which turned out to be something Dr. Kluger agreed with.  In this case, as it turns out, my decision backfired on me.  I was experiencing confusion and a variety of other symptoms.  After talking with Benzi, she told me to gradually decrease my dose to what I had been taking and let her know how I felt. I also agreed to see a UC physical therapist to address the hip and shoulder pain.

Fast forward a couple weeks.  I made the change and felt considerably better.  I had a number of sessions with the physical therapist and was at least making progress.  Additionally, I scheduled a consult with a general surgeon regarding a hernia that was discovered through an appointment with my regular doctor regarding my hip pain.  I think the reduction in Rytary allowed me to think more clearly and take action to get these other problems moving in the right direction (a good thing, as I had to schedule surgery for a DBS battery replacement in the last week).

So, back to the phone call.  It was Julie calling just to check on me to see how I was doing!  I was blown away that she would take the time to do this and told her so!  I was able to share that the change she recommended had apparently been a very good thing and went on to share about the progress with the physical therapist and the two surgeries I had scheduled.  She as glad to hear that I was making progress.  Then we talked about palliative care for a few minutes and her interest in getting involved with Diane Cook’s ground-breaking self-efficacy program for PD patients (PD Self).

I wanted to write this article for two reasons.  First, to honor Julie.  She didn’t see it as a big deal, but I did.  Second, to share my encouragement that the “patient-centered” movement is continuing to evolve.  I have said many times that God has blessed me in my PD journey.  Julie is another example of this fact.

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