Living the life you planned, when you have Parkinson’s

Man Plans and God Laughs

Yiddish Proverb
 

It’s that time of year again.  We will be inundated with messages to make resolutions for the new year, eat better, lose weight, get back to the gym, and on and on.  So we boldly make our resolutions, follow through for a couple of weeks and then promptly forget about them.
I saw this quote on  Facebook today by E M Forster, and it reminded me of the Yiddish proverb that says: “Man plans, and God laughs”.  Maybe someone made one New Year’s resolution too many and wrote the proverb when things did not turn out as planned.

We have plans for our lives ahead, but somehow, things don’t always turn out the way we thought they would.  When you hear those four words: “You have Parkinson’s Disease,” your life changes instantly.   Can you still live the life you planned???  Or will you have to make major changes?

When I was first diagnosed, I was fortunate to have family and friends who supported me.  I had a doctor, my Internist, who was looking out for me, managing my care.  But no matter how much I tried to live life as I had planned it, I found that there were changes that I had to make because of PD.   I became pro-active about my health care.  I keep up on the latest PD research so that I can talk to my Movement Disorders Specialist about the future for me.  I found new types of exercise that work better for the Me that has PD.  I now have weekly pill boxes to fill every Sunday with the numerous medications that I need to take.  I must be more mindful as I walk so as not to trip on an uneven sidewalk or step.  And I long for a full night’s sleep.  I did not plan for this   I wanted to age gracefully, doing the things that I wanted to do.  But for the last 7 years, I have been living the life that I planned as well as I can and will continue to do so.  The good thing is that I am still ME.  At least I think so.

Today I had an interesting phone call.  A case manager from my local hospital, which some of my doctors are affiliated with, called to tell me the services that are available to me, given my health records.  I guess this is the good and the bad from the mandated electronic health records.  She knew what doctors I had seen and all of my various health issues.  It is bad enough that I will be joining the ranks of Medicare in a few months.  However, I did not think that I was in such bad shape that I needed someone else to oversee my health needs.  She offered a nurse who could manage my care, a social worker, transportation,  home health care services and more.  Somehow, I never thought about these things.  After all, I still do almost everything I did before PD.  Maybe not as well, but I definitely don’t feel disabled.   And I still drive, so I don’t need her offer of transportation.  I have a new shiny red car to show the world that I am still in charge of my future.  Please don’t take that away from me.

As the new year approaches, we should all look back at the last year to see how our lives have changed with PD when making New Year’s resolutions.  Parkinson’s can make it difficult to plan ahead, but think about the following:  Has your life changed significantly?  Are you still able to do the things that you love to do?  If not, what can you do to recapture that part of your life, even if it requires modifications?  Do you need the help of a case manager/social worker to get the best health care that you can?  Are there new things that you can do to live the life that is waiting for you in a better way?   My challenge for each and every one of you is to go ahead and plan to make 2017 the best that it can possibly be.  God may be laughing, but you are still in charge of your life.

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2 responses to “Living the life you planned, when you have Parkinson’s”

  1. It’s been about a year now that she stopped driving, uses a U-Step Walker mostly all the time to prevent falls, has a caregiver 5 days a week, 8 hours a day. My wife holds her head high and does most things like she used to do, but slower. I have learned to be a patient husband and caregiver and as long as my health holds out, I’m in all the way. I have learned to shop and to cook under the watchful eye of the master, my dear wife. Her diagnosis of Parkinson’s in 2002 hit us hard and up to a year ago, the going was not that bad. Now that has changed in the last year. I still see the ball of fire gal that I met 40 years ago. I like to kid around and tell her to get her gear together and we’re going for our annual snow skiing week. Man plans and god laughs is something we have been saying for years. We shall continue to make plans and make 2017 the best that it can possibly be.

  2. barbaramrubin@gmail.com Avatar
    barbaramrubin@gmail.com

    Thank you for this Very thoughtful piece

    Best, Barbara M Rubin Sent from my iPhone

    >

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A Note To My Readers


I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.