The right doctor

A friend of mine who also has Parkinson's was diagnosed by a neurologist -- just a neurologist, not a neurologist specializing in movement disorders. A movement disorders specialist is a doctor who sees only patients with Parkinson's or other related movement disorders such as Lewy body dementia, Wilson's disease or Huntington disease. (Parkinson's is by far the most common movement disorder. )  In the ten or so years since my friend was diagnosed, she has continued in the care of her general neurologist, although I have encouraged her many times to see a MDS. This week she finally relented and was able to get an appointment with a MDS in the same practice as my own doctor. She called to thank me for persisting in my efforts to get her to switch. She felt much better cared for by a doctor who was much more attuned to her situation and her medication possibilities.

If you are not 100% comfortable with your doctor, find another one! Too many people put up with substandard care because they don't want to hurt a doctor's feelings. Don't be ridiculous! Most good doctors can replace you with another patient in a heartbeat. And certainly if you have Parkinson's, unless you don't have access to a MDS, you should definitely be seeing one. All PWPs should because PD is so complex that specialists are the only ones who really know what it is all about. To find a movement disorders specialist in your area, check with the American Parkinsom Disease Associstion or the Parkinson Disease Foundation.

Perplexed by tai chi

Ok, ok, I HAVE been exercising. I just have not been posting a daily schedule. And I have been going to tai chi on a regular basis. But I no longer instruct the tai chi class because my ability to do the tai chi moves correctly has become unpredictable. I don't really understand why, but doing tai chi seems to bring on my symptoms. I will begin a set feeling fine with meds working well. Then as I move through the set I become increasingly unbalanced and may even have moments of freezing. It is very discouraging, but I must remember the "I can live with this." There is still so much that I can do and for that I am grateful.

Happy New Year!

The New Year is already ten days old and I am finally getting around to posting on this blog. Perhaps I should make a resolution to post more often! I am exercising -- I promise! I am just not reflecting much. But my first yoga class after the holidays yesterday gave me something to think about. There were two folks new to the class. Most likely they had each made a New Years resolution to exercise more. One seemed to find the class difficult and near the end endured a period of significant wearing-off. It seemed to upset her. Now, of course, everyone has his or her own feelings and you can't apologize for your feelings; they just are. But I have found it much more productive not to get upset over a demonstration of my symptoms.  Getting upset doesn't get me anywhere. And the problem generally happens in front of people who understand -- or else who don't notice! Either way it is OK! (I do still feel a bit embarrassed but not upset.) It is more comfortable than trying to hide the symptoms.

So . . . let me know if anyone else feels the same way -- or not. Thanks for reading.

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!