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.

Response about amplitude

Yeah! A comment with a question! We have a real conversation going here!  Claire (a PT from California ) asked how I incorporate amplitude into my daily life in other ways besides the big steps. Now that is a good question! Certainly there are variants of the steps ... Stair steps two at a time, hiking steps, walking steps to match my husband. Since gait is probably my primary PD symptom, these are what I notice the most, but there are certainly other ways in which I should be incorporating amplitude that I have not thought of. But the primary other way that I am working on amplitude is the volume  of my voice. PWPs lose the volume and expressiveness of the voice. There is in fact a program of voice therapy for PWPs called the Lee Silverman Voice Treatment LOUD program and I actually did this therapy some years ago. It involves being LOUD for an hour 4 times a week for 4 weeks, but I didn't find that it helped a lot immediately. It did help me to believe that I could be loud (I got up to 105 decibels!). I do feel that my volume has improved, and I am now more conscious of it every day, but I credit this to another practice -- reading aloud to my husband John. In the past ten years I have read over 70 books to us, the most recent being my brother Charlie's well-received new novel  called The Bookman's Tale. Reading aloud to someone requires adequate volume and clarity as well as expression. This can be a challenge to me -- especially in the car on a noisy highway. But it has become more automatic with lots of practice. And I am aware of the need to speak up in social situations more as well. Just as PWPs cannot judge their decreased amplitude in movement, they also are not good judges of their decreased amplitude in voice volume. I commend to those of you with this problem the art of  reading aloud. If you don't have a spouse to read to, find an elderly friend or a child. Reading aloud is a lost art that needs to be found again!

Training to the amplitude deficit

So I have explained that PWPs don't have a correct sense of the amplitude of their movements. So what is the treatment? BIG movements. Becky Farley, PWR! Moves guru, started her emphasis on big movements with the BIG program many years ago. This has morphed into her PWR! Program which has a similar but even more inclusive emphasis. The idea is that if a PWP takes what feel like deliberately large movements, such as giant steps or a huge arm reach, the movements will actually be of an acceptably normal amplitude, and that if this is practiced enough, it could begin to become automatic again. Farley suggests what she calls "whole body activation" exercises that force increased amplitude and thus promote good range of motion.

I try to think of big steps with every step I take, and certainly such awareness helps. But it is hard to concentrate that much, so some of my steps end up short. But I am working on it. I try to think of hiding the fact that I have PD, not because I am embarrassed or ashamed but because then I would have succeeded in making my movements big enough to appear "normal."

Did the gym twice this week like a good girl. And I did tai chi even though it remains very difficult. Persistence helps in living with this disease .... Or call it hard-headedness!

Deficit #3: Amplitude

Another deficit in Parkinson's is amplitude. This means the PWP takes smaller steps and in general makes smaller movements than the normal average. In many cases the movements are of a smaller range than is necessary or appropriate or even safe. Somehow the kinesthetic sense that tells people how big their movements are is askew in PWPs, which means that we don't  realize or sense that our movements are small. To work on amplitude problems, we ned to practice taking big steps and using big arm motions. What feels huge to us is actually just big enough . . . usually. So put something on the floor to mark a BIG step or step over a doormat, etc. I have to think with every step ,"Big steps, big steps."

By the way the amplitude problem  applies to voice volume, too. Bu that is for another day. Keep moving and share the blog with someone you know. And comment!

Deficit #2: coordination

Another deficit which I feel in Parkinson's is coordination. Because PD begins on one side and is marked by bradykinesia -(slowness of movement), the hands and feet don't work well together side to side. Interestingly a 2008 study by Schectmwnn et al. demonstrated that visuomotor problems in PD were actually due to problems in organizing tracking movements and in programming their control rather than in motor ability issues. So the problem can be attributed to cognitive issues. Actions that are made difficult by this deficit include buttoning buttons, using zippers, tying shoes, cutting food, writing, shaving -- lots of everyday activities. To work on these kinds of problems, an OT once told me to make my movements (we were talking about getting only out of a wallet) to make every movement deliberate and strong. This goes for any exercise as well. It doesn't mean it will get easier, but it certainly won't improve if you give up and don't work on it. As Becky Farley says, "use it to improve it!"

Back to the gym this morning . . .

The importance of care partners

Back from vacation, where I learned an important lesson. We were in Oregon doing some day hiking. My wonderful husband and care partner John had a bad cold which affected his appetite. He went on a strenuous hike on an empty stomach and drank some water, but not enough. Near the end of the hike he passed out (in my arms -- that was fun) and ended up being hospitalized for 24 hours. SO now I was the care partner, the worrier, the one whose plans were changed, who had to think about the other. It made me really appreciate what a considerate care partner John is. The term "care partner" is the one we prefer. John often says that at Parkinson's conferences, he feels out of place as the one who does not have PD. He feels that his role is more one of a partner -- WE have PD. I am so thankful for him.

I also learned that I cannot publish an entry in this blog from my iphone. Sorry. More soon . . .

On vacation

Yes, I am still exercising. In fact I will be hiking a lot in the coming week. But I am hopping on a plane in 3 hours and don't know if I will be able to get any posts up in the next week. So you can talk amongst yourselves, i.e. COMMENT. Give it a try. 

Gait problems and comments

First of all, I had a request to change the comment settings to make it easier to make a comment and that is now done. So say something, y'all!

Last time I wrote of training to one's deficits. Deficit #1 is gait. My gait is difficult. It often feels like I am walking through a foot of snow. My feet feel heavy and awkward and I have to concentrate to make each step more than a shuffle. It is better when my meds are on, but still difficult. PWPs commonly complain of these issues and gait is probably my most common difficulty. How do I work on it? Any walking practice, whether on treadmill, on city streets, on hiking trails, with or without poles, can be useful. However to be useful I must take large steps. My Alexander Technique teacher asked me to note the difference between taking smaller steps and larger steps, so I paid close attention and found that the larger steps required that I reach out from my hips. So I think, "Reach out from my hips!" With each step. Which is exhausting.

I worked on the treadmill yesterday, danced and worked out with my trainer Jourdan. Enough for one day

Good days and not so good days

First of all, you should know that I have a long list of topics that need to be addressed here so each post will include a ramble into one of them, as well as any necessary personal update. This morning I went to my gym, did mixed cardio and really pushed myself. However I still felt my meds were off during tai chi this afternoon, making this a not so good day. I think tai chi is just too demanding on my balance. But I will persist because......(direct lead-in to......)

Topic for today: training to one's deficits. It used to be that when people with Parkinson's (or any disability) exercised, they were admonished to avoid what was difficult. Multitasking is hard for PWPs so don't make them do more than one thing at a time. Newer advice is that you should face your deficits square on. Handwriting difficult? Work on fine motor skills. Walking difficult? Do gait drills? This principle can help each PWP figure our his or her own best workout ... Work on what is hardest! (Easier said than done.) so what are my deficits? Next time. . .