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!

I should have known better

Boy, did I do something dumb. Yesterday my husband and I planned a fairly long hike that involved two cars, one at each end of the trail. The logistics were complicated. I realized about the time we reached the trailhead to start that I had forgotten to pack my next dose of meds which was due about 30 minutes into the 31/2-hour hike. To go back home would be so time-consuming it would effectively cancel the outing. So I decided to just grin and bear it . I did not tell my husband. For a while I was OK, although I had to think about every single step. Then as my gait deteriorated, my husband figured out that something was going on. The hiking got harder and harder and harder. By the end I was using my walking stick AND my husband's. The lesson learned is that while a positive attitude is important, I must take my meds in a timely fashion because I DO have Parkinson's. Many thanks to the patience of my loving husband.

I feel like such a whiner

I have been sick for a week. Last Saturday I threw up, an event preceded and followed by much stomach pain. Now along with more stomach pain and lack of appetite and exhaustion, I have had diarrhea for four days. I am crossing my fingers that it won't continue today, but I am really tired of bring sick and really discouraged. It is hard to keep my chin up. AND I have not been able to keep up my exercising so it will take me a while to get back in shape when I am finally better. (It takes PWPs longer than others to recover from this sort of thing.) It is easy to say, "Have a good attitude." It is much hard to keep that attitude consistently. But it certainly won't happen if we don't even make the effort.

I must realize that others are trying to make the effort for me. Whenever anyone says they hope I feel better, I may think, Yeh, yeh, yeh, but in truth I should see it as a community attempt to keep up my attitude. And whenever my husband brings me something to drink, that is his effort to help me make my effort.

So I WILL be better soon, and in the meantime, SOMEHOW I will keep moving! 

New book on Parkinson's exercise

I have received the new book that Becky Farley has just released  on her PWR! Moves program of exercise. It is not really anything I did not already know because I have heard Becky speak numerous times, as well as having attended her exercise retreat twice. And my personal trainer Sarah uses her methods as well. But it is nice to have it explained better, and presented in a whole concept, although her presentation is a little haphazard to me. Still once again, it offers the proverbial kick in the butt. Which I ALWAYS need.

Becky' foundation is a set of four moves -- reaching, rocking, twisting and stepping. These each can be done prone, supine, seated or standing. And they can be boosted, i.e. enhanced, by hand, speech, breathing or brain exercises.  I plan to review all of these possibilities even though I already do lots of these. It doesn't hurt to rework my system regularly. I really believe that if I can keep up this exercise thing, I can keep my PD at bay (dare I add ... Indefinitely?).

This week was the 16 th anniversary of my diagnosis. Wow! Keep moving!

Life is discipline

Today is Ash Wednesday, so there is talk of what you are going to give up for Lent ( or take on). For me the decision just popped into my head ... Exercise is saving my life, so my life must be the discipline of exercise. I resolved to go to the gym three times a week during Lent.

But then I went to my dermatologist checkup and had to get a plantar wart on the ball of my foot frozen off and it hurts like hell and I can hardly walk. So I am not going to the gym tomorrow. But there is always the day after tomorrow. I must keep moving!