Long time, no word from me

I should probably apologize for the long stretch of silence. This blog has not been updated since June 22 and that was almost 3 months ago. But I don't feel that an apology is owed because the reason is that there has been little to report. That means that my Parkinson's has been in the background of my life -- which is great news, and yet no news.

The biggest news is my life is that I am now the grandmother of two adorable twin boys and that my husband and I are keeping these babies (now 2 months old) three days a week. Quite an undertaking, but also quite a joy. Their parents are the only of our offspring that live in the area and these are the only first grandchildren we will ever have, so this is really a once-in-a-lifetime opportunity.

Will my Parkinson's flare up? Will it interfere with my caring for my grandsons? Will I need to attend to myself more frequently? I will cross any of those bridges if and when I reach them. One day at a time, I am living my life despite this diagnosis. And right now I am living well.

Symptom update

Well, I think it is about time for a general update. I am still having some dyskinesias especially in the evenings or when under stress. I tend to hold my arms to try to steady them and people think I am cold. I am tired of being asked if I am cold. The next time this question is asked, I think I will say, "No, I have Parkinsons disease." I look forward to watching the reaction.

So I tried taking one-half Sinemet every 2 hours Instead of 1 every 4 hours). It helps a lot with the dyskinesias, but it is a pain to have to remember meds every two hours. Hmmmm......what to do?

In the meantime, I have started working out with Brian Terpstra's Parkinsons Rehab program, and my gait is so noticeably improved that three friends have commented that I look better! It really seems to help. Brian's methods are very targeted towards issues with gait and balance. He hopes to retrain one's brain to have another sector take care of function no longer possible in the PD-affected areas. Good old neuroplasticity! 

So I guess I am doing well. But the stress of waiting for the birth of our first grandbabies (twin boys!) is keeping me from reveling too much at my improvement.

New idea

An idea arose from our last support group regarding programming for PWPs. It was noted that our programs in our area are fairly doctor-dependent, and although the medical community is a great source of accurate information, the personal touch of people actually living with PD is  missing. SOOOOO my husband and I came up with the idea of a program we are calling P2P -- Person to Person. It will be a presentation that will follow the PD 101 session and will be especially intended for the newly diagnosed. (However anyone can attend.) We will discuss our reactions and fears after our diagnosis, the reality that we have discovered and how we have adjusted, and the steps we have taken to manage our PD. Plus LOTS of Q & A. I feel really good about this and hope it is well-received.

 

After all who knows better about living with Parkinson's?

Winning

Winning isn't everything. But when you DO win, it can be pretty uplifting. I participated in a six-week exercise competition. There were teams from lots of companies such as Paycor and P & G, as well as the UC Gardner Center and individual-led teams. I joined the team called Parkinsons Power, which my friend and personal trainer established for anyone in the Parkinson's community. In addition to me, there were two other PWPs, 4 personal trainers and a few others. The team with the highest average number of hours (weighted by intensity) of exercise was the winner -- and yes, we won! Amazing! We can do anything if we really put our minds to it.

It was interesting to note how motivating it was knowing that my exercise hours would be chalked up to benefit my team. Lesson learned . . .

Listening at last

I have been ranting about Parkinson's and exercise for quite a while now. And at least in part because this is a difficult population to motivate, I have occasionally felt like I am trying to encourage a brick wall. Well, this week a local television news crew filmed our dance class and interviewed me. The piece that appeared later on their broadcast spoke of the importance of exercise and the special value of dance for those with PD. Yessssss! The pearls of wisdom I am quoted as saying: "Get off of your couch and come dance with us!"

 

My tribe

Davis Phinney, the winningest cyclist ever who is now living with Parkinson's disease, refers to the group of us who are also living with PD as his tribe. Even though it affects each of us differently, we share something so profound, so fundamental, that we feel a kinship.

Last weekend we had houseguests. Debbie and her husband Michel are Canadians whom we met in Montreal (at the World Parkinson Congress in 2013). Debbie is living with Parkinson's. She is more disabled than I; she walks with difficulty, and her voice is so quiet as to be difficult to understand. But I understood her and felt a bond unlike any other. She is part of my tribe. We can help others in our tribe even by just understanding. I am grateful for my fellow tribespeople who care for and understand me. 

An honor to speak out

This week I had a great honor. I spoke to an auditorium full of first-year medical students. They were studying the therapeutic use of exercise, and their professor wanted to use Parkinson's as an example of a condition that can be treated with exercise. I told them about the symptoms. I told them the principles of Parkinson's-specific exercise that address those symptoms. Then I had them get up and try out some of those exercises themselves. I made them bend and stretch; I made them count out loud. I challenged their brains by making them step in different directions according to the numbers I called out. They giggled.

They giggled. but they learned. As I passed a group of students in the hall after class, they were talking about me . ... "She really knows her stuff," one said. They thanked me for my presentation. I told them I was pleased that they as future doctors were learning the importance of exercise in Parkinson's. It was an honor to be part of that process.

The professor said that when I come back next year, he might tweak the "show" a bit. But his colleague who was handling the audio said, "Don't change a thing!"

No news is good news

Sorry I have not written in a while .... no ,wait! I am not sorry. All this means is that my PD is chugging along, bothering me as little as possible. It is not that I don't have any symptoms, but rather that the symptoms I have are manageable. I can live with this.

I went for my neurology check-up today. I have another new neurologist -- my third! I can outlast the doctors. (I have been diagnosed almost 17 years!)

I hope for you that whatever life gives you is something you can live with.