More inspiration

Two things happened today that inspired me, really, really inspired me. This morning I read an article coughed  up by my google alert about a woman who died from complications of PD. She was 79 and had lived with a Parkinson's for 40 years! Wow! She was one tough cookie! That means that she was diagnosed at age 39, the same age at which I was diagnosed. Oh, yea! Now I have a model for living well with PD for a very long time. Because I, too, am a tough cookie.

The other inspiration came at yoga class. You may remember my post several weeks ago in praise of yoga. That post was mentioned in a local PD news blast and that particular entry now has more hits than any other. Two of those readers were convinced enough they came to yoga class today! Thank you, Bob and Bill! I know you won't regret it.

If I were not an optimist, I could see the obit I read as an oh-no I hope that is not me kind of story. But I choose optimism. Yes, optimism is a choice. Look up and maybe while we are looking up, they will discover a cure.

Persistence is a blessing and a burden

For someone living with Parkinson's movement is difficult.  But since exercise is all about movement, and exercise is medicine for PD, what I must do every day is difficult. In order to actually keep doing it daily, I must have a great deal of persistence. So I guess I am thankful for the persistence (hard-headedness?) that helps me keep at it although i do get tired of all this exercise. I can see my persistence as a blessing. But persistence can also be a burden. Powering through something that is hard is not always the right thing to do. Sometimes I should step aside and give it up or accept some help or some respite. I am supposed to know when to draw the line, but. I don't always. So much introspection! And we thought this was a physical condition , , ,

Another 5K

As part of my motivational efforts to keep myself moving, I am trying to walk a 5K event once a month. In June there was the Parkinson's Wellness Chapter's fundraiser Steady Strides. In. July it was the Hyde Park Blast. In August the Association for the Blind did one in a lovely setting -- Spring Grove ( Cemetery and Arboretum) and in September the Sunflower Revolution was another Parkinson' event. My event for this month was the Warrior Run, which benefits the local teen suicide prevention program.

I had done the first four in 45 minutes or less, but after some recent forays back into the world of running, I decided to try running this one. Well, it may have easier with someone to run with, but I did it mostly. I ran almost 2 miles, slowed to a brisk walk at the water stop (for about 1/3 of a mile maybe), picked it up to a run again, walked about another two-tenths of a mile near the end and ran across the finish line. My time was around 34 minutes!

I don't know that I really want to engage in such high impact exercise, but the high intensity is good. And I wasn't even sore! Who wants  speed walk with me in November? 

Inspiration for the fight

I have just returned from Montreal where John and I attended the World Parkinson's Congress. Wow! Over 3300 folks from more than 70 countries joined together -- neuros and basic science researchers, dancers and physical therapists, PWPs and yoga teachers, care partners and clinical trial organizers -- for three very long days of sharing information and sharing hope. It will take me a while to absorb all the information, but it doesn't take as long to absorb the hope. I was encouraged by the desire of the researchers to discover more treatments and even a cure. I was encouraged by enthusiasm of the neurologists to fight with their patients and to work together to make lives better. I was encouraged by the zeal of the other therapists -- exercise professionals, physical therapists, etc. -- who work daily helping PWPs feel better right now and even slow their progression. And I was encouraged by the care partners without whom all the PWPs could not be there. But mostly I was encouraged by other PWPs, many of whom are worse off than I am. It makes me feel both good about my exercise and what it does for me -- and grateful that I am doing so well. And their example offers a good model of how to go ahead and live life. One woman who was diagnosed at age 27 said that you have to give up your fear of the future to start living in the present. Yea, what she said!

More than reading a blog

My last entry about yoga was one that made me wish for more readers, so that could translate into more exercisers. I was lucky enough to get the wonderful Kate Stark, who keeps the Parkinson's Wellness website, to post a link in this week's electronic newsletter. Now that post has (in the two days since it went out to a wider audience) recorded more viewings than any other. Aha, so you are at least intrigued by the idea of exercise. We're getting somewhere! If you agree that yoga even just might help your PD, contact Patty at healingartsyoga@aol.com or just come to St Paul Methodist Church at the corner of Galbraith and Miami in Kenwood/Madeira on Thursday at 12 noon. You know you need to do more for yourself than just reading this blog.

I had my check-up with my doctor today. My movement disorders specialist, that is. Every PWP who has access to a specialist should see one. Even if you want him to work with your general neurologist, you will get better care overall. My MDS doc actually found that I am doing BETTER than 6 months ago! How can this be? You know my secret . .

Also last night was the premiere of the Michael J. Fox show. While it did not paint a complete picture of  PD, it did get it out there in the open. And it was funny ... A bit irreverent, but tastefully done. Should be interesting to watch th world react. Your comments are invited!

In praise of yoga

I attend a weekly class of yoga specifically for people with Parkinson's. It is taught by Patty Braasch who is a registered nurse with over 25 years of experience with PWPs, senior populations and teaching yoga. ( She also has a sister with PD.) The class is funded by the local Parkinson's Chapter. There are just three people who attend regularly. Two of the last three weeks I have had a private class.

I don't know how to get the word out better, but more people should come to this class! While many kinds of exercise are good for me in the long run, yoga is the only one that makes me feel better right away. The gentle but extremely complete stretching helps a huge amount with the stiffness and achiness that are hallmarks of PD. Sure, it takes some effort to reap the benefit, but I truly feel much better after each class. Patty is very good at offering and encouraging modifications of each move depending on each person's abilities, so there is no need to be afraid of it being too difficult. As always, I encourage everyone to get off that sofa and MOVE!

Spreading the word

Last weekend I attended and participated in the Sunflower Revolution, an event sponsored by the University of Cincinnati's Gardner Center for PD. There was a symposium on Saturday with lots of great speakers and on Sunday-- two bike rides, a 5k walk/run and an hour of PD exercise demos. I got up on the stage on Saturday and demonstrated some PWR! Moves in front of 600 people. I also made flyer for four of our exercise opportunities. And on Sunday I walked the 5K in 43 minutes, then participated in ALL 6 of the exercise demos, on stage for one and leading another. Whew! I am doing my darnedest to not only keep myself active, but to encourage others to get on the exercise bandwagon. The message from the symposium over and over was YOU MUST EXERCISE! It makes such a huge difference. And those of us who do are so much better off. I don't know how to get the word out better, but sometimes I feel like I am yelling at a brick wall. I want to increase the number of participants in our exercise classes. If anyone knows some ways to help, please let us all know! (The attendance at the dance class this week was way up, though! )

More hiking

As my husband John and I have done more hiking (44 times so far this year!) I have noticed more interesting things about hiking. It is a great chance to practice my gait, as I have mentioned before. Even though I have to think about every step, I have the opportunity to think about every step.  I think, "Big ... Step ... Swing ... From the hip." But it is not just the amplitude of each step that requires concentration. The placement requires thought as well. Hiking on a challenging trail can be a cognitive exercise. Where do I plant each foot each step? Do I go to the right or left of that stone, that root,that mud puddle, that snake? It is a multi-tasking situation for certain! Especially if I am in the lead. And multi-tasking is one of the challenges for PWPs. So to train to this deficit, I should hike more!

Delayed stress

I finally realized the likely reason for my wearing off and increase in symptoms this week. Two weeks ago was the week that my aunt Susan was dying. And stress for me shows up on about a two-week delay. So there it is. And I feel better already. I need to give myself a little leeway and try to flow with the stress instead of remaining tense and stressed.

When I am experiencing wearing off, I have this funny feeling that if I could just move enough, my meds would kick in. It is odd to try to describe, but that is why I can be found walking up and down the hall in the middle of the day at work. Moving feels good although doing it is difficult. Guess that is why they call it movement disorder.

Pass this blog to a friend. Keep me accountable and motivatd! This morning I did a35-minute power walk and some PWR! Moves. Yesterday I did treadmill and moves I the early morning, exercise class  midday, and a hike in the afternoon. Ad I feel good!

Inconsistent symptoms

One of the most frustrating things about Parkinson's disease is that it is so unpredictable. The degree to which my body responds positively to exercise and to medication and negatively to stress is impossible to predict. I know that these are the factors to monitor (exercise, medication, and stress), but which one contributes the most at any given time is a crap shoot. I am back to each dose wearing off -- although not way too early -- and I have no idea why. My symptomless summer was a gift, but is a thing of the past. But I am exercising, I promise. Warming up with those PWR! Moves, treadmill or outdoor power walking until I am dripping with sweat, and stretching with some yoga moves every morning, plus hiking (4 hikes last week!) and tai chi and more. Dance will be resuming soon, too! Me go, girl!

My exercise these days

I am going to diverge from all that fascinating background on Parkinson's disease to do what I originally planned to do . . . report on my exercising. This is good for me because the accountability keeps me honest and motivated. So you are helping me by reading this. And it helps you by . . . Um . . .well, why are you reading this?

The nearly perfect summer with almost no wearing off may be coming to a close. I felt each dose wear off today, and yesterday when I was only 2.5 hours into a 4-hour dose, it quit on me as I was walking a 5k. I still finished in 45 minutes but it felt like I was walking through mud. So I need to work harder to get that exercise in because I believe it will make a difference. I just took an evening walk and am now sweaty again. As I have gotten more fit, I have developed the ability to sweat like a pig. How unpleasant! Drip! Drop! But it is a small price to pay. I have been good about my morning exercising wi the exception of stretching. Still can't get nto that habit! I will work on it some more. Thanks for listening!

Neuroplasticity

Neuroplasticity..... Now there is a big word. Neuroplasticity is the fairly recently accepted finding that the brain can change. This has been seen in response to injury or damage where an undamaged section of the brain adapts to perform a function no longer possible from a damaged part. What this means for Parkinson's is that it is possible that some of the function lost due to the death of dopamine neurons can be recovered if the brain can change to accommodate this loss. This is amazingly good news. How can this be accomplished? You guessed it.....exercise! Becky Farley's techniques are called "exercise for brain change." So every time I walk with BIG steps, I am helping my brain relearn that movement in a new way that can become permanent if I do it enough. Wow. Makes me want to get out there and exercise! How about you?

Plenty of exercise

Well, this weekend I got plenty of exercise. On Saturday  I did my usual exercise routine in the morning with treadmill, PWR moves and stretching, and I also attended the PD exercise class at11:15. Then my husband and I walked to lunch, walked to the bookstore and then back home for a 40-minute total.  So that was 2 1/2 hours. On Sunday, usual morning routine, walked to church and back, hiked at Big Bone Lick State Park for 1 hour 45 minutes and finally joined a group boxing class that Sarah Stahr  (my personal trainer) was trying out? That was over 4 hours!

I gave some thought to why I have been doing so well and the only thing I can see is that perhaps the amount that I am actually walking is fairly high. I am not going to slow down now! 

Deficit #4: Balance

In my list of deficits, balance is right up there. A disturbance in one's balance is one of the hallmarks of PD. You don't realize how much of the typical daily movement requires balance until your balance becomes impaired. Walking, sitting, changing positions, reaching, squeezing through a narrow space or a crowd, staying on a path, hiking uphill or downhill -- these are all feats of balance that can be more difficult in PD. The good news is that balance is one of the most trainable of skills. It is a skill that will improve when you work on it. I am not sure how this works when one has a degenerative condition like PD, but certainly one can fight the degeneration and at least not get as much worse.   Static balance, however, is not as important ad dynamic balance. So moving while challenging your balance (such as stepping back and forth with one foot at a time) is best. I even like to try the good old-fashioned walking along the street curb! Makes me feel like a kid!

Building habits

I have heard it said that it takes three weeks to make or break a habit. Sometimes it takes even longer. When I was first diagnosed with Parkinson's, it was quite clear that I was not swinging my right arm normally. One of my first tasks was to try to remember to swing my arm correctly (i.e. reciprocally) when walking. I remember that it did not feel natural. But I persisted, and one day, I suddenly realized that my arm was swinging without quite so much intention required. I am sure it had taken more than three weeks, but it had happened.

Not every malfunction of movement caused by PD can be remedied, but I am beginning to feel that if I work hard at it, many movements will get easier or become more natural. I still have to think BIG for almost every step I take if it is to be a good step. But I find myself SOMETIMES taking a pretty good step automatically.

Keep working on those habits!

Back from vacation

I will need a few days to get over jet lag and gather my wits, but we had a great trip to Russia. I did at least 15 minutes of PWR! Moves every morning which really helped work the kinks out. The rest of my exercise was primarily walking, but we did a LOT of walking. Crossing the bridges while being buffeted by the wind in St. Petersburg was a challenge to my gait problems, but I did it! I felt as though for the most part I could forget about PD, but I also felt it was the confidence that I could feel that way that actually made me feel that way. More in a day or two...

Another vacation

My husband John and I will be leaving tomorrow on another vacation, so I won't be posting for several weeks. We are going on a river cruise in Russia -- a country that I visited 35 years ago on a language study program, and have always wanted to return just once. The changes should be amazing, but then all of us change. And we also age. I have said that in some ways, Parkinson's is just accelerated aging. Aging after all involves diminished movements, balance problems, lack of flexibility, and decreased cognitive functioning. Sounds like PD to me.

My goal when at home is to get a total of 1.5 hours of exercise or other vigorous activity daily ... Preferably  in two sessions. When traveling I have less control over this. But I must remember walking through the airport (hurrying gets the heart rate higher!), and walking in a large city ( which can be difficult), not to mention the PWR!Moves routines in the cabin and walks around the deck. I plan to keep up my active life ... if for no other reason than reporting back here (that is the accountability factor). Have a great couple of weeks. We return to Cincinnati on July 19.