Team Parkinson’s – The Captains, The Players, The Benchsitters, and The Fans

Whether you have had Parkinson’s disease for awhile, have been newly diagnosed, have been diagnosed with Young Onset Parkinson’s disease, etc., sooner or later you’re going to want to talk to someone about it who really understands – someone who’s been there already on the journey with this Little Monster.
A support group can be your lifeline because it is like a team. If you think about it, the best teams are those that work together and are not made up of players who seek to go solo and feel they can do it all on their own. Like the old adage, “There’s no “I” in TEAM.”
Every team has a coach. Someone who knows the game well. Someone who has played the game before. Maybe even already coached other teams in the past. Someone who can show you the best moves. Show you areas you can improve.
Every team has a captain – a peer who leads, can keep things going, encourage the team to do their best and play to win even though they themselves are playing the same game, win or lose. They have a winning attitude. They play to win.
And in order for the team to perform well, each player needs to be ‘in the game’. Just because you’re part of the team in number, doesn’t necessarily mean you’re ‘part of the team’. Bench sitters don’t contribute a whole lot in terms of playing the game, but they can. Instead of sitting in a puddle of pity or with an attitude of anger, they can be cheering on the others who are able to play hard this time around. They can have a cup of cold water ready for the next player who finds himself needing to sit on the bench a while. They can support and encourage their teams mates making their role invaluable.
Of course teams are made up of the players themselves. Some seem to play in every meet, game, match and the like. They appear “better” but  they are not more valuable for we all contribute in some way, in some capacity for the win – the cure.
Players are ‘equal’. The quarterback can appear to be the star but there’s no way he’s going to make it to the end zone without the support and assistance of the rest of his team. A pitcher doesn’t play alone in the game of baseball. Even sports that appear to be played ‘solo’ – tennis, marathons, boxing, etc – are all part of a team of some sort.
Players are constantly working together, fighting together for that win. Maybe one player will be able to run the length of the court today and even make. That winning basket, but tomorrow they may be benched due to an ailment or injury.
If you’re a player on Team PD, still able to move freely without many constraints, don’t forget about the bench sitters who long to be in the game, but find themselves ‘benched’ for now. They may have a lousy attitude, or have a positive one. Either way, they are still part of this team  and in great need of some encouraging words. 
And remember, for every team, there are fans. They come out, sit through the tough plays and cheer on the sidelines. They are there in the rain, the cold and the biting wind. No matter the weather, they still show up for ‘their’ team. On Team PD, fans can be friends, family, caregivers.

Whatever part of the PD team you’re in, you’re not playing in this lifelong game alone. Get into a support group, find a ‘coach’, a ‘captain’, someone who’s been there and can encourage you in your game. Remember… You are not alone.

Eleven Things You Need to Know About PD on Parkinson’s Awareness Day


Parkinson’s Awareness day is today.
April 11th.
Numerically: 411
Same as dialing up ‘information’ (for those of you who remember what dialing up information once was).

So, since this is ‘the day’ for official information (per my say so) and since Parkinson’s Awareness Day is now officially on this ‘day of information’, here are 11 things you may not know about Parkinson’s disease and most likely should.

1. While being informative and all, this picture is so outdated and needs to go!!! At the very least, give the poor guy some new slippers.

2. A person with PD doesn’t necessarily have tremors.

3. The progress for new medication has been crazy slow for the length of the disease’s known history. The main drug used to treat PD today is the same drug used 200 years ago. That is great if it is the best we can do. That is not great if that is really the best we can do. We must, however, continue to work alongside researchers and physicians, journeying on in order to find a cure. As it now stands, PD is one of the most treatable diseases of all neurological disorders.

4. Dystonia can be a major in the life of a patient and not one you’d want on your team.

5. For some, symptoms are often on only one side of the body, making it half as bad as those with symptoms on both sides of the body. This oddity persists through the progression of the disease.

6. Michale J. Fox has learned to laugh at PD, although I’m sure he doens’t consider it a laughing matter.

7. Exposure to paraquat, a pesticide, triples a person’s risk of getting Parkinson’s disease.

8. Therapeutic techniques used in Parkinson’s disease and tremors would not have been possible without  research on monkeys

9. People with Parkinson’s often must answer to the question, “What’s the matter?”. We say, “Nothing.  Nothing is the matter. We just wear what is referred to as a ‘masked face’. That’s all.”

Sad, mad,

happy or glad,

full of joy, full of sorrow,

we look the same today

as we will look tomorrow.

10. There is a proven link between gut bacteria and PD.

11. This picture depicting PD also needs to be tossed into the pile of rejects…

Feeling Better, Getting Better

Okay, so maybe you won’t be jumping off a snow covered mountain peak on a snowboard or skateboarding down a rail, but having Parkinson’s disease is not a death sentence and there are so many things available for you to still do and many things you’ve loved to do are still available as well, perhaps just at a slower pace. Don’t live a glass-half-empty life. Life is much too short.

Studies have shown that exercise is one of the very best things you can do for yourself if you have PD, walking being one of the best choices. Physical therapy is a bonus and they can teach you what’s safe and doable without hurting yourself, which is important to consider with PD and it’s limitations. A walking partner can make all the difference. Ask someone to start walking with you.

Swimming is a great therapeutic exercise in so very many ways and exercises many muscles much gentler than other programs.

Painting is possible! Check out this site: The PD Gallery of Painters

Biking is another great way to get exercise that has proven to be extremely beneficial for PD’ers.

If you don’t want to go out of the house to exercise, check out the ‘Wii-Fit’.

Write daily – keep a journal. Also – crossword puzzles, Soduko and the like keep the mind active.

Take pictures of the things that bring you joy!

Take a dance class. Studies are showing this to be great exercise and therapy for PD patients. If you don’t have a partner, find one.

Get into a singing group to stretch and strengthen vocal cords – church choir? local singing ensemble? Check out Tremble Clefs , a program started specifically for PD’ers to come together for music, fun, and to strengthen their voices! A nationwide program.

Volunteer at the local hospital, a nursing home, after school tutoring for kids, reading to kids at libraries…

You don’t have to be jumping out of an airplane or another extreme activity. Just get involved somewhere, doing something, with someone. You’ll be a better person physically, emotionally, and mentally.