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.

Not exactly exercise

There are a number of activities that are -- well, active -- but that are not exactly exercise. One of those is gardening. I have been doing little installments of weeding at dawn for about a week. Getting out there on my hands and knees, pulling those weeds vigorously, hauling the bucket to the compost heap, getting up and down, up and down -- this is certainly active! But not always fun.

But talk about fun ... I went ziplining a couple of weeks ago! A canopy tour from platform to platform (each of which was 50+ feet in the air), zipping through beautiful trees with fabulous views, up to 200 feet in the air and on lines up to 1100 feet long  (there were 10 lines, 2 rappels, and 2 skybridges. Wow! What an adventure! But I did it, and no one indicated that I was unusually unbalanced. So I even did it "normally."

I did it because I wanted to do it while I still could.

Now I think I will do it again!

Supporting the cause

Last Saturday my husband and I walked just over three miles. We were joined by close to a thousand others, all walking the Steady Strides 5K to raise funds for the Parkinson's Wellness Chapter. This money is spent primarily on the executive director's compensation, educational programs, and exercise classes. (Yea! Exercise!) This year the goal was $100,000, and the current total is just over $2K short. It is not too late to make a contribution at steadystrides.parkinsonswellness.org . These programs and classes are aimed at easing the burden of PD and can be veery important to those of us living with PD. Join us in funding these great opportunities!

A reason to get better

Sometimes we PWPs get frustrated and lose sight of a reason to make the huge effort to get better. Or at least to maintain function. This past weekend I had a good reason.  I practiced for my part by walking with slow, big steps, by keeping my posture upright and my head not tilted. By balancing well as I walked and by holding my arm so that it would not shake. And my practicing paid off . . . as I walked my daughter down the aisle to her beloved, hugged him, then her, stepped around her poufy train and took my seat to witness them exchange marriage vows. That was a fabulous reason. I am so proud that I can walk well enough to do that.

Everybody is different

I heard a local PD exercise researcher/instructor who has a lot of good background but a rather inflexible approach, speak last weekend. He insists that his clients come to his gym three times per week for an hour and a half each time. He refuses to let his clients use a treadmill without constant supervision. And he says everyone must do a variety of exercises and it must be progressive. But he also admits that everyone is different. While these may be the ideals, I am not going to beat myself up for not following the research to the letter, if what I am doing works for me. After all everyone is different.

I must also remember that what works for me may not work for others and I should not insist that others follow my exercise regimen.  I just want to encourage everyone to do what they can to make  life better. But I also cannot judge the quality of life of others. Everyone is different.

Cost of staying healthy

I just read an article giving the results of a research study comparing PWPs who exercise and PWPs who box for exercise. This is non-contact, intense boxing training from a program in Indianapolis called Rock Steady Boxing. The Boxers showed significantly better mobility and gait. This is a wonderful program that I have seen several times. And they even have trainings for instructors and they have affiliates in 24 cities across the nation. But although they say they are a non-profit, their training costs $700 and there is an annual affiliate fee of $500. Add this to the cost of a specialized gym unless a boxing gym owner has a very large heart and you may have picked many PWPs right out of this market. I am going to investigate how these affiliates fund their programs. Stay tuned!