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

Coping with Depression

 

I woke up this morning feeling depressed.  For a person with PD, this is not unusual due to changes that take place in their brains over which they have no control.  I have been taking an antidepressant medication for this reason.

However, the feeling I had this morning was unlike any I had before.  I felt like I was carrying around a heavy weight on my shoulders.  There was a sense of sadness and hopelessness that seemed to envelop me.  I hope this wasn’t obvious to my wife.  She didn’t mention it and neither did I because I didn’t see what good it would do.

The cause had to be the dreams I had last night.  I have strange, vivid, sometimes scary dreams most nights, though I don’t remember them as much as I used to.  I remember enough to know my dreams last night were all these things and that I was fighting off an unusual animal that defies description.  I don’t know for sure why the impact was so much greater than anything I have experienced in the past.

It may have been a product of appointments I had this past week at Banner Sun Health Research Institute in the Phoenix area (we have spent the last few months in Surprise, AZ).  I had applied for their brain and body donation program and was accepted.

I have written about this subject in the past and believe their work is a great and wonderful thing!  I even found myself looking forward to the first appointment.  I suppose I was excited by the prospect of having my eventual death serve a useful purpose.  It is not always easy to find things to feel good about connected with PD.

The appointments, which took a total of four hours (split into two days), were for the purpose of gathering information from both my wife and I regarding what we have been experiencing.  About 2.5 hours was spent on cognitive/memory issues, an hour on motor and other non-motor symptoms, and a smell test.  Identical testing will be done annually using the results from this first appointment as a baseline for comparison.

I must admit that it was a sobering experience, to say the least.  While I remain happy and committed to being involved, I hadn’t anticipated the impact of the realization that this was an activity that will culminate (if all goes as planned) with my death.  It also didn’t help that my memory showed noticeable deterioration (I was diagnosed with mild cogntive impairment in 2011). So maybe the experience became more “real” than I had anticipated and not just putting an important piece of my plan into place for the future.

It was fortunate that Linda and I had planned to work out at our resort’s exercise facility this morning.  I really didn’t feel like it, but I dragged myself over there and I’m glad I did.  I climbed on the elliptical machine and turned on my mp3 player that has many of my favorite recordings on it.  After about ten minutes, I could literally feel the weight disappearing from my shoulders and the dark cloud lifting.  The high point was when I listened to a recording from one of my son’s weddings.  I was transported back to that happy day and found I was crying tears of joy.

I wanted to share this experience because it was so positive for me.  I know that many of my friends struggle with depression that may be worse than anything I have felt.  I just want to urge anyone dealing with this kind of problem to not lose hope and fight against it.  Talk to your care partner and doctor about it.  Decide what you are going to do when you start to feel this way!  For what it is worth, I will be rooting for you!

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Kirk Hall

Tremble Clefs: A life-changer for PwPs

 

 

Tremble Clefs (http://www.pdf.org/en/media_news/release/pr_1311104858) is a program for PwPs and their care partners that combines voice/speech therapy with the joy of singing. I have been singing with the Phoenix chapter for the last two months and am amazed by the enthusiasm and strong sense of community in the group, as well as the stories about how this experience has changed people’s lives. One gentleman who was diagnosed 20+ years ago described how he had totally lost his ability to speak due to PD. Now he is singing with the group and even doing solos (with the aid of a microphone).

This is just one of the success stories I have heard from the 40+ members of the group that rehearses every Wednesday. When asked why Tremble Clefs is helping them so much, the unanimous response is that it is due to the extraordinary commitment of their leader, Sun Joo Lee. Sun Joo has been leading two groups in the Phoenix area for nine years utilizing her speech/voice therapy education. The love between Sun Joo and the group is palpable.

Each rehearsal starts with stretching of neck and shoulder muscles as well as exercises to increase flexibility in the face, throat, and vocal chords. These exercises involve a variety of movements that also have cognitive benefits. After a series of vocal warm ups, the group rehearses a variety of songs that have been selected for scheduled performances. They are mostly familiar tunes that are well known with a focus on melody only. Individuals are given opportunities to do solos or duets which are more challenging. The concert audiences are extremely appreciative and clearly are moved by the stories and the open sharing of the difference tremble clefs has made in their lives.

For my part, I have experienced significant improvement in my speaking voice as well as some improvement in my singing. I have enjoyed the experience, which I wasn’t sure I would be able to do. I still miss my “old singing voice” and the doors it opened, but I am gradually learning to enjoy what I have today while keeping the memories.

I care a great deal about the well-being of my PD brothers and sisters. I wish that all of them would have the opportunity I have had here in Phoenix. Unfortunately, this program is not available everywhere, but it could be. It is no small task to get a Tremble Clefs program up and running. It takes time, commitment, communication, and funding. That said, the return on investment is breath-taking (no pun intended).

For information on how to start a Tremble Clefs group in your area, visit http://www.trembleclefs.com/start-a-chorus.html.

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