At long last

At long last another blog entry! I recovered from that broken rib though it took a while. In the meantime, I apparently used the other wide of my body too much (my left side) because it now seems I have what is probably tendonitis in my left shoulder. I am doing exercises and stretches for it, but probably should call the doctor. Ho- hum! It is always something!

My PD goes on as usual. Not substantially better, but not substantially worse. I really should write here at least once a week to keep me accountable in my exercising. I am sort of up to my ears in PD-related responsibilities right now. I started a new support group because I saw a need for one. And I have another P2P program coming up. And I have applied to be on the People with Parkinson's Advisory Council for the Parkinson Foundation.  Wow! That would be something!

A setback

There are setback and then there are setbacks. Five days ago, when in the process of proactively addressing my PD with exercise -- exercise which by the way was earlier in the week announced to have been proven to slow the progression of PD-- I tripped on a loop of cord  that was loose on the side of a boxing ring, fell backward, hit my back on the metal pole that was behind me and broke a rib. All I can say is ... bummer! Oh, and tomorrow is a new day.

My rehab instructor has been most helpful, assuring me that if anyone can bounce back from an injury with no long-term effects, it is I. Let us hope he is correct. 

We all need a buddy

I have been matched with a buddy for the World Parkinson Congress. We all need a buddy at many points in our lives. My husband is a buddy; my friends are each buddies for certain times and certain activities. I need a buddy to help me balance at the gym. I need a buddy to eat ice cream with me. This life is difficult enough that we should not go it alone.

So if you feel like you are fighting your battles all by yourself, do something and find a buddy. (In keeping with my policy of not naming the people I write about, I won't tell you my buddy's name, but I will let you know what kind of buddies we get to be.)

Breaking another silence

Here I am again apologizing for a long period of silence. Yet once again it is because things are fairly stable. I had my check-up with my neurologist yesterday and she found all my symptoms and problems totally stable. She did not see (though I did report) an increase in dyskinesia. I had evaluated myself before the appointment and realized that dyskinesia was my only substantive complaint. Based on my personal research it appears that my choice is between taking a smaller dose of Sinemet more frequently (which reduces dyskinesias substantially) or continuing with the dosing prescribed (which gives me dyskinesias when I am inactive at peak dose). The smaller dose, however, wears off sooner and does not take effect as well. So would I rather be dyskinetic or "off" my meds? I would rather be dyskinetic. This decision puts me at peace with my dyskinetic self. The dyskinesias are not constant and do not harm anyone or anything. So now that I have made that selection, I am more accepting of the results.

P.S. If you don't know what dyskinesias are, look at Michael J. Fox. Those writhing, wobbly movements are a side effect of the medication we all take for Parkinson's.

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.

Reliably inconsistent again

We have finally returned home for a while. After the Blue Ridge Parkway trip, we took our sixth trip to Scotland, where we hiked 8 times in 8 days, saw 7 castles, 4 abbeys, several Roman sites and lots of amazing rocks, cliffs and waterfalls. It was inspiring. And, yes, wondrous!

But it was also challenging. My PD symptoms remain reliably inconsistent. I just can't figure them out. Just as when I try to do tai chi, it seems that whenever I challenge myself in terms of balance, that is when my balance is the worst. It is almost as if working on my symptoms turns off my medications. It is very frustrating to have taken my meds in a timely manner, but to still have trouble with my gait as if I had not taken them at all. But that is the nature of the disorder, I guess. I would love to hear from anyone else who has such predictably unpredictable wearing-off. I still have trouble accepting that, even if I exercise and take my meds on time, I will not necessarily be symptom-free. That is the nature of this beast.

Wonders to behold

I have just returned from the trip we planned to celebrate my retirement. After lifting ourselves out of our grief about the loss of our grandchildren, my husband and I embarked on a drive along the entire length of the Blue Ridge Parkway, taking 12 days to do it, hiking (usually) twice a day and doing it all in our Mazda Miata (with the top down as much as possible). When we stopped at the Natural Bridge in central Virginia before we even got on the Parkway, I was floored at its grandeur and decided  that this was going to be trip of wonders.

Wonders can be found everywhere actually; one only need LOOK for wondrous things. The grandeur of the mountains was certainly wondrous, especially Mount Mitchell and Indian Rocks and Thunder Ridge and Devil's Courthouse and Craggy Gardens and Richland Balsam and . . . But so was a caterpillar on the trail and the snake I spotted behind the tree (which after much debate we decided was a timber rattler) and the calmness of Abbot Lake (and the great blue heron we saw there) and the fog blowing across the mountains.

Equally wondrous was the fact that I made it back to the car on the day we hiked on the side of Grandfather Mountain. The trail led us through the boulder field which the Linn Cove Viaduct was built to protect. And what a boulder field it was! Most spectacular! But very difficult to walk through, especially for someone with balance challenges. We ended up cutting our hike short by a bit when John noticed what trouble I was having. But I made it back. What a wonder! I was able to turn this challenging time into a victory by seeing it as a wonder rather than as a defeat.

Look for wonders in your life and you'll find more than you ever dreamed were there.

Someone else's turn

Sometimes it feels like my Parkinson's is an important focus in my life. I don't much like it when it is the focus of those around me as well. But sometimes (like this week) it fades into the background when the focus is something else momentous happening in the family.

This week my daughter-in-law delivered twin boys, our first grandchildren. Unfortunately they were only 22 weeks in gestation and so were not viable and did not survive. Our family mourns.

Cinnamon

I have been on cinnamon for about a month. Yes, I have been "dosing" myself with 1/2 teaspoon of Ceylon cinnamon 3 times daily for over four weeks. And I am doing well. But I don't think it is the cinnamon.

I don't notice a specific improvement. It is just that my medication "on time" is smoother with almost no wearing-off. And my dyskinesias are less common as well. So I almost feel like I don't have Parkinson's at all. And I could live like this for a long time.

Well, I think I will get to do that because this time the stress relief that is allowing my PD to fade into the background is much longer lasting. It is a strategy that many people have tried and have benefited from, a technique that can cure even workaholics if they will let it work its magic. It is called retirement.

Another treatment possibility

A new study was published recently that indicates that (at least at Rush University in Chicago) in animal models the effects of Parkinson's were reversed when the subjects ingested cinnamon. Plain old cinnamon. Well, actually, Ceylon cinnamon, but it is readily available and delicious. Earlier articles poo-pooed this possibility, but the guys at Rush may be onto something new.

A woman in my support group walked into our meeting last week without her walker. Turns out she has been including 1/2 teaspoon of cinnamon in her diet three times a day, and on the third day she noticed a remarkable improvement. It may not work for everyone, but I am not taking any chances. I got some Ceylon cinnamon and would be happy to sprinkle it on every meal for the rest of my life if it helps. The verdict is still out.