Saturday, November 15, 2008

My Tips For Living With Parkinson's; Vol. 1

I know that PD is different for everyone, and what works for me may not work for someone else.  I just thought that I would post a list of some things that DO work for me, in the hopes that it might be of use to someone else in the future. 

My tips for living with PD (volume I):

Fatigue:  Catnap, catnap, catnap!! Even a minute or two of sleep can help.  Plan around your limits; knowing that you can't keep going for "x number" of hours straight, make sure that you don't sign up for it.  Example:  we went to NYC to visit relatives for Christmas, and they took us on a walking/subway tour of the city.  Great fun!!  We had lunch in Little Italy, did some shopping, went on the Staten Island Ferry to see Lady Liberty, saw a Broadway show, then had dinner at a Brazilian restaurant and went to a comedy show after dinner.  If I had it to do over again, I would have skipped the comedy show and just taken a cab home.  However, I did get about an hour of sleep on the subway, which I've since been told is a BAD idea!

Depression:  I haven't had as much trouble with this as some, but I've found that exercise really, really helps.  I know it's difficult to exercise when you're depressed, but if you can get past that, it does get better.  I'm not talking about marathons, here, I'm talking about maybe taking a walk or vacuuming or doing some sit-ups or something like that.  Every little bit helps.  Doing something positive has also been very helpful to me.  Join a support group, try to help others, join a clinical trial, participate in a fundraising event, donate blood.  All these things make me feel like I've found a silver lining in all of this, and I find that I feel energized and positive again.

Stiffness, slowness: Again; exercise.  I have a very sedentary job, and now that I make a point of taking 2 10-minute walks every day, the muscle stiffness is much less of a problem.  Also, take your meds on time.  If I'm even 20 minutes late, it can make a huge difference.  It's best to find a good strategy to remember to take your meds on time.

Tremor:  If your meds don't help this, then you're probably focused on just trying to hide it.  I've found that if I'm walking with my "bad" hand hanging at my side, my tremor is at its worst (although my tremor is very mild in general).  If, on the other hand, I hold something in my "bad" hand, nobody can tell that I have a tremor at all.  When I'm sitting in a meeting and the tremor is bothering me, I simply hold the "bad" hand with the "good" one or hold a coffee cup with the "bad" hand or something.  I don't usually care whether people notice my tremor, though.  It's just that some days, I feel more self-conscious than others.

Funny "Parkie" walk:  This is a tough one.  I didn't even know that I was walking "funny" until a couple of co-workers remarked on it.  What I try to do now is this:  concentrate on keeping the back straight, the shoulders back (but relaxed), the chin parallel to the floor, and the heels hitting the ground before the toes.  If your toes are hurting, it probably means that your are leaning a little too for forward as you walk.  Try to keep your center of balance more in the middle.  Don't wear heels (I try to follow this rule, but break it every now and then!).

I will post more tips as I think of them, realizing that what works for me may not work for someone else.  PD is a very, very individual kind of torture, isn't it?

1 comment:

Sassafras said...

I will try to follow those tips, they are very good. I especially like the cat naps. You are doing such great work on your blog. I enjoy reading it every time. I think we should have a team called the we are women hear us roar group,those of us who blog. Sass

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.