Keeping your good attitude

Of course it is Christmas again,and of course we are busy. Parties, friends, lots of family, people in my house, lots of cooking, wrapping, schmoozing-- a little more activity than usual along with less chance to exercise and classes that are on hiatus. It is difficult to avoid being stressed. And as my symptoms are clearly more significant (to me)  it is difficult to keep that positive attitude. But I have tried to remember my own words .... This is something I can live with. I don't apologize for my slowness getting out of a car. That is just how it is. No apologies needed or expected.  I ask for help when I need it (usually ... This is a hard one.) And truly there are still a lot of situations where others don't notice my poor movement quality. So I just get exercise where I can and live with it! (Next week .. New Years resolutions!)

My attitude

I am aware that I have a few new readers so let me give you some basics. I am 55 and female. I was diagnosed with Parkinson's in 1998 at the age of 39. I exercise a lot. This is my story, but I avoid using other folks' names. However I want  to tell my story to inspire others ... Especially when it comes to exercise!

I have mentioned before the importance of a positive attitude. The past week or so has been an interesting exercise in this. My symptoms seem to be more apparent in the past week. Notice I don't say that I am getting worse or that I am suffering a bad period. It simply is more difficult to move these days. (I am slow, my toes curled three times this week, my balance is way off to the point that I am more comfortable  sitting down --- just a few examples.) But I find myself thinking .... I can live with this. That is so much easier than thinking I have a degenerative disease that needs to be treated by whatever it takes to get me as close to normal as possible. The meds I am on now work sometimes. Sometimes I feel as if it is harder to move well so perhaps the meds aren't fully effective. But I am not in pain and I am not going to damage anything by just putting up with it.

Another benefit to the I-can-live-with-this attitude is the living part. I am not suffering from PD . ..  .I am living with it. As the symptoms progress slowly, I seem to be able to adjust to each new stage , making it straightforward to just live with it. So I will just live with it.

 And it is not going to go away. I can live with that.

Doing what you can

One of the questions I was asked by a PT student when I visited their class was what activities that I used to do, but that I can no longer do. This was tough, because I try to concentrate on what I can do, not what I can't. It was good to realize this. But it is true that I am limited. The one that popped out at me was no longer instructing in tai chi. I must admit that as a loss and mourn it. And move on. In all my activities and exercise classes, when people apologize for not being able to complete some task, I tell them NOT to apologize. We all do what we can, and that is all we can do. If we are limited, that is the way it is and we don't need to apologize.

So what I can do is take a hike in the glorious wintertime mountains with my husband ... and that is what I did yesterday. The view was grand!

A great opportunity to reflect

I may be telling you about my visit to the physical therapy class off and on for some time because it had a big impact on me . What a great opportunity to share all the information I have learned and all the experiences that have made up my life with PD.  These were 2nd year students, so when I used terms such as dyskinesia and postural instability, they nodded and smiled! I told them my PD story and they listened politely, then asked some great questions. I was struck by the fact that the information I was giving them was possible or even likely to result in the dedication of a physical therapy career to helping PWPs. Or even several careers! Wow! It  was also interesting to speak to an audience who had almost no emotional reaction to my disabilities. Kind  of refreshing! I did not have to worry about explaining myself or about offending someone. Finally, I am thrilled that the professor who invited me is dedicated to getting more PTs trained in PD ways and serving the Cincinnati community. Yeah!

PD awareness

One of my goals in this blog and in my life is to increase the understanding of Parkinson's disease among those who don't live with the disease. I have read, heard, and experienced so much about PD myself that I sometime lose sight of the fact that not everyone knows what Sinemet is, or that it causes dyskinesias or that DBS is not a new procedure. Since PD is quite isolating and those with more advanced disease often don't get out in public much, it behooves those of us who are higher functioning to work assiduously toward this kind of increased awareness.

Just such an opportunity popped up for me this morning. I got an email from a physical therapy professor whom I met at the Sunflower symposium. She asked If I would come to her class next week and talk about the importance of exercise for PD and let the students try out their evaluation procedure on me. Fortunately my calendar is clear that day. I will be proud to do what I can in the awareness department. Future PTs make a great audience, too. I hope you will do what you can to promote awareness in whatever arena the opportunity arises.

Easy to forget

You may have  noticed a longer than usual lag since my last post. I promise I have been exercising. I have been diligent even though I have not been inspired. How easy it is to forget my own inspiration! When one is faced with putting forth the effort to exercise at least once, often two or three times a day for the rest of my life AND one knows that it will just keep getting harder to do, it is easy to get discouraged. Those inspirational moments are all around me, but I just don't see them. Remember Bill and Bob who came to yoga? They were both back this week. Yeah! But the woman who had PD for  years?....I don't know if I can make it. But I did treadmill, yoga, and tai chi yesterday, dance, personal trainer workout, tai chi and walk to work the day before. Tell me to keep it up.

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.

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. . .

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!

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).

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!

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.

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.