Friday, June 28, 2013

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!

Wednesday, June 26, 2013

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!

Tuesday, June 25, 2013

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 . . .

Sunday, June 23, 2013

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 . . .

Saturday, June 15, 2013

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. 

Thursday, June 13, 2013

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

Tuesday, June 11, 2013

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. . .

Sunday, June 9, 2013

A rainy Sunday

Yesterday was another hike in addition to my morning hour of exercise. And we got lost twice so it made for a longer hike (2.5 hours). But today was a rainy Sunday and, after accomplishing my morning exercise, I spent the day going down to Charlotte to visit my aunt Susan who is 35 days into stroke recovery.

My exercise today involved what I am calling mixed cardio -- some stationary bike, some stepping up and down, some reaching up and down -- and some housework. Yes, as long as I keep my heart rate up, I can vacuum and call it exercise. This is the important principle of integration; it can be exceedingly helpful and quite motivating to incorporate therapeutic movements into everyday activities. An example is doing a reach-down-and-up or two when I put my shoes on. Sweeping, vacuuming, scrubbing floors -- all are aerobic. Any other suggestions?

And by the way, o faithful followers, would you prefer a post here every day? Every 2 days? 3 days? Speak up now! And thanks for your support. And your feedback!

Friday, June 7, 2013

Hiking helps

In addition to my very intentional hour of exercise each morning, I often have more exercising coming at me as the day progresses. Today it was hiking. My husband John and I hiked about 5 miles in the Pisgah National Forest on the Daniel Ridge Trail. We love to hike and it is great for me because I have to think about and be intentional about every step. We hiked on average more than once a week last year and are on target for the same this year.  It is great dynamic balance practice, especially if we gave to cross a stream on rocks! This was a beautiful trail up alongside a very rocky stream with lots of little falls. The end of the trail passed the knick point of the lovely Jackson Falls.

Morning exercise was mixed cardio for 45 minutes and stretching. I also did small motor (to be explained later).

Wednesday, June 5, 2013

Day 3

I am going to have to think of more original titles of these posts. So what has inspired me to start this journal? For someone diagnosed 15 years ago with PD, I am remarkably high functioning. I firmly believe that this is due to the exercise regimen I attempt to adhere to. I started exercising more and more -- 3 hours a week in 2000, 5 hours in 2006, 9 hours in 2009.....now around 12 maybe.....I lose track! What I have learned is that exercise is my key to living Parkinson's. and figuring out what the best combination of exercises is for me was my goal of the 2013 PWR! train, a PD boot camp by Becky Farley, th guru of PD exercise, held in Phoenix last week. My physical herapist for the week Claire McLean (who is totally awesome) suggested a blog to help my motivation. So to those of you following me, thanks for helping by providing some accountability.

Today I went to the gym, did the flow and the PWRstanding routine, 40 minutes of mixed cardio (around the track once, medicine all squats, step-ups, stair climber, stationary bike and treadmill -- focusing n intervals, then 10 minutes of stretching. Will explain what this all means as we go along. But this afternoon I danced (dance for pd class) and worked out with Jourdan ( personal trainer) as well as walking to the Chirch and back. Daily total about 3.5 hours!

Tuesday, June 4, 2013

Introducing myself

I feel as if I need to introduce myself a little more, so you out ther is blogger land can understand a little  better what is going on. As I mentioned I was diagnosed over 15 years ago. I wa fairly active at the time .... Did a lot of walking and was a single mother of three children ages 9, 12 and 14. I began exercising a little more intentionally with walking partners several times a week. Eventually added strength training in 2001 or 2002. I have added and added until around 2010 when I think I maxed out on MORE exercise. I drew the line at an average of 10 to 12 hours a week. As you will see in articles I plan to cite in future posts, many different kinds of exercise have been found to be helpful to PWPs. But one problem with them ll is motivation. More on this in my next post.

Monday, June 3, 2013

The first post

Who am I and why am I writing this? I am a 54-year-old woman and I have been living 15 years with a diagnosis of Parkinson's disease. That is PD and that makes me a PWP (get used to the lingo). At a recent conference on exercise, I was encouraged to blog about my experience partly as a motivator for me and partly as an inspiration to others. It is in the spirit of inspiration that I offer this glimpse into my life and what it means to try to live well with this disease. I try very hard not to use negative language -- I don't talk about suffering or fighting or losing function. I believe that a positive outlook is one of the most important treatments and I firmly believe that exercise is the very best treatment. In the days, weeks, and months to come, I hope to convince more of you of the same belief and motivate you to do your best to live well with PD.