Voices of Experience

TIME TO CARE…TIME TO SHARE

Reflections from Members of our Parkinson Community

Parkinson Disease: Twelve Years Later

By Joan LaRose, Southington

As with all life processes, my Parkinson's disease has progressed noticeably over the past twelve years. Adjustments have been made. I'm not quite as active in leadership roles but continue to stay connected with my PD group friends for support. Understandably, I'm disappointed on having to give up activities that I enjoyed. However, I've become aware of doors opening as others closed.

I've always enjoyed working with young children and music. Lack of mobility and energy now make that a wonderful memory. After grieving this loss and asking myself “What am I still able to do?” I began a poetry workshop and found it very fulfilling. This creative venue has opened up another form of expression and does not take strenuous effort. Coming in first place at a recent poetry contest would never have happened had I not explored other interests and stayed “stuck” in my grieving. I'm grateful for that gift.

One of the most challenging decisions before me was to discontinue driving. I knew this would be difficult but I chose to stop, realizing that my response time was becoming slower and slower. I did not want to harm anyone so I took control of the decision myself. It was difficult at first going through “withdrawal” but I soon was surprised to find that I was going out more than when I drove. This is where friends are a blessing.
Fortunately, I have many.

When I found myself projecting and became anxious about the future, I decided to have a medical assessment done to gather information regarding home health services. Knowing what assistance I am and will be eligible for took the edge off my concerns. I move more slowly than I did but manage with a cane. I need to be reminded to speak up when I talk. I have an occasional fall and allow people to help me to my feet when necessary. Physical exercise helps my mindset as well as my body if done regularly. I participate in a personalized aquacize program twice weekly.

So what has PD taught me over the years?

• Patience with myself and with life in general. Things can not always be accomplished immediately. All human beings are dependent on others in some way.
  
  
• When something is taken from you, grieve the loss and then move on.
  
  
• Accept help graciously for the gift that it is.
  
  
• Plan but don’t project – no one knows the future.
  
  
• And…most importantly…Life does not have to be perfect to be wonderful!

In 1999, Joan LaRose shared her thoughts on living with PD and these were included in the national APDA supplement "The Fine Art of Re-creation and Socialization with Parkinson's Disease." At the time, she was a young-onset PD person and the greater Waterbury support group leader. For the publication, she stated that with PD, you have to "catch joy as it flies by." She continued: "Everything has a gift and the illness of Parkinson's, for me, has been a gift."

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