I Have Been Doing Some Writing & Not All Rainbows & T-Shirt Slogans

Introduction

I really have not been doing much blog posting since COVID. One reason is that 2 of the pieces that I have written for this blog were published elsewhere. In addition, I managed to co-author an article for the Journal of Parkinson' Disease with Soania Mathur who is a physician, patient and advocate. 

Dr. Mathur is a member of The Brian Grant Foundation Advisory Board, on the medical advisory board for Parkinson's Canada and serves on the editorial board of the Journal of Parkinson's Disease. Many patients, family members, care givers, doctors and researchers have read and were inspired by, her piece: "To My Newly Diagnosed Self." If you are reading this blog, you should read this piece as well. I am honored that Soania agreed to write a journal article with me.

Inspiration

I joined a few Parkinson's Disease support groups on Facebook during COVID.  Posts from these support groups inspired me to do some writing. I will paraphrase one of the quotes below:

"Parkinson's Disease is horrible. I am tired of being called a warrior and constantly being bombarded by catchy t-shirt slogans. Somebody please do something!"

The next day, I read several posts about how doctors offered patients medication and treatment options for some of their symptoms but not others. What I learned from reading these posts was some physicians were not asking patients: "What do you really want?"

Timing is everything. The next day, I received an invitation from the Journal of Parkinson's Disease to write an article entitled "What People With Parkinson's Disease Want." A few days later, I asked Dr. Mathur to co-author the piece and was honored when she agreed. 

The article explores the differences between symptoms that are most measured, treated, are the most bothersome and those that patients want treated. Please read it if you can.

My experience of working on this article has taught me a few things that I think doctors and PWP should say and ask.

Doctors:

"I have noticed your symptoms are...."

"Do you have any others?"

"Which of these symptoms would you want to explore treatment options for?"

 

PWP:

"The symptoms I have noticed are..."

"What are the treatment options for this symptom?"

"I have noticed that I can no longer sleep through the night (fill in any other symptom as this was just an example). Could this be caused by Parkinson's Disease?"

"__________ is really bothering me. What can be done to treat it?"

Am I disabled enough?

I was inspired to be a guest blogger for the Journal of Parkinson's Disease by the post below from an online support group that began:

"I know that I am not as impaired as other here but..."

This made me concerned that in our efforts to make people feel better, we may be minimizing their suffering and grief. I warn you that this piece is not a walk on the bright side. It is entitled: "Something to Cry About: Grief, Depression and Parkinson's Disease." If you have 5 minutes please read it.  

Conclusions and some thank you notes

Recently, I read that Michael J. Fox is losing his short term memory and ability to memorize lines. This made me sad because he is only 59, but he also said that he is happy that he can write:

"I'm down to this," Fox confessed. "My guitar playing is no good. My sketching is no good anymore, my dancing never was good, and acting is getting tougher to do. So it's down to writing. Luckily, I really enjoy it."

 

This seems like a good place to conclude because this is also why I write.  I never turn down an opportunity to contribute to a research article or to publish something in a blog. I write because I can and because I hope it might help others, but mostly, I write because it helps me.

 

Thank you

I often receive thoughtful texts, email messages and phone calls about my blog and other writing. I do not always respond for several reasons. Mostly due to fatigue and depression. You may or may not be able to relate, but sometimes, it seems like I have an insurmountable amount of work to do and I just shut down and do nothing. I also want to make it clear that sometimes, I do not respond because what you wrote means too much to me. It strikes a chord. Depending on the day, I just may not be able to go there. Sometimes, I just have to decided that it will be a "no crying day."

PLEASE FEEL FREE TO SHARE ANYTHING THAT I PUBLISH. 

I DO NOT NEED TO BE ANONYMOUS.