When I was first diagnosed, I had mixed feelings about attending a support group. I wondered if we sat in a circle and I said “Hi, I’m Tom and I have Parkinson’s” (Hiiii Tom). Was there a 12 step program for dealing with Parkinson’s? 😉 And I was worried that seeing PWP’s with a wide range of symptoms would be like seeing my future. But as I learned more about Parkinson’s I realized that it is a progressive disease that affects everyone of us in different ways and no two seem to be alike. And, as we learned at the Kripalu retreat and in Florida, it is helpful to meet other PWP’s and caregivers to trade experiences, share coping strategies, and for a sense of community
So, last week we attended two local support groups, The East Tennessee Parkinson’s Support Group and the local Kingston Support Group. Both groups meet at a local church, both meetings included lunch and both provided us with a positive experience.
The East Tennessee Parkinson’s Support Group, PK Hope is Alive, met on Tuesday in Oak Ridge. There were probably 60 – 70 people in attendance pretty much evenly divided between PWP’s and caregivers. We opened with some voice exercises led by one of the PWP which included some singing. I didn’t have a signing voice before Parkinson’s and it sure hasn’t improved, but it was fun. After lunch they introduced Dr.Scott Wylie Ph.D from Vanderbilt University Movement Disorders Clinic, a National Parkinson’s Foundation Center of Excellence. He gave a fascinating presentation on “Cognitive Changes in the Parkinson’s Patient”. He and his research group are doing research about the effect too little or too much dopamine can have on cognitive functions.
Dr Wylie pointed out that James Parkinson, in his 1817 ‘Essay on the Shaking Palsy” described the disease as ” Involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forward, and to pass from a walking to a running pace: the senses and intellects being uninjured.” (Underline added) He expects that last bit would be revised if James Parkinson were alive today.
While most of us were aware that lack of dopamine is at the root of our motor symptoms, his research has shown that it may also have an impact on our cognitive symptoms too. I hope to get a copy of his presentation and will provide more information in a later post. After the presentation, he answered questions from the group which meant we didn’t get an opportunity to break out into smaller groups of PWP’s and caregivers for discussion but the meeting was fun and we plan to attend again.
The local Kingston Support Group met on Wednesday. We first heard about this group during a Tai Chi lesson when someone mentioned that they were aware a group met in the same space but didn’t know the day or time. So I had planned to call the church when we returned from Florida to get the information but, as luck would have it, the Monday edition of our local paper made mention of the meeting’s day and time. We found out later that they had been trying to get it published for quite awhile and Monday was the first time it was finally inserted in the community calendar page.
This group was quite a bit smaller than the Oak Ridge group. There were about sixteen attendee’s including another couple who were there for the first time after seeing the mention in the paper. We sat around three tables and had a great opportunity to discuss symptoms, medications, exercises and care giving tips while enjoying lunch. After lunch we had a short presentation by the founder of the group who is a speech pathologist and had just returned from a conference. She gave us some tips on how to stand erect and a simple stretching routine that will strengthen the neck muscles and help prevent problems with swallowing. Again an interesting and informative meeting and we will attend again.
So I didn’t have to announce my problems to the group(s) and I didn’t see my future, but I did get a lot of good information and a chance to meet other PWP’s and caregivers and exchange information.
We have been working at keeping up the exercise routine since we have been home and are doing pretty well, averaging about an hour a day. We continue to walk or ride the bike and try to include either Tai Chi or Yoga routines everyday. We purchased another Tai Chi DVD that is more advanced and not quite as easy to follow but we are getting there. Yoga continues to be difficult with my stiff muscles but I know continuing it will help me to gain flexibility and it will get easier (I hope).
April is Parkinson’s Awareness Month and I hope to post informational items as the month progresses. We will be walking in the East TN Parkinson’s Walk on April 5th. This walk is the local version of the Parkinson’s Unity Walk held in NYC April 26th. One hundred percent of the funds raised are donated to Parkinson’s research foundations. You can find out more about the walk by clicking here or if you wish to support our team, you can click here.
April is also Autism Awareness Month, another cause that is important to me, so next month’s posts should be chock full of information!