From the balance between “defying” and “embracing” the condition, to what they value most in life – three people tell us about the relationship between Parkinson’s disease and their sense of self.
Sharing his perspective on the link between Parkinson’s and identity, US-based motivational speaker John Baumann explained how the diagnosis has influenced what he values most in life. read here
David: So, I’m finally doing well with my Parkinson’s and now learned I have to deal with a web designer! Remember in the beginning I mentioned I was a “simple man”, but I also should have said I’m “not tech smart” either! When this blog started, I did it to give people with Parkinson’s a view of how I was experiencing my progression with PD. Then I decided to write about DBS, to give a different point of view as to what one might expect or experience from the procedures…. I felt if I shared my opinions or experiences it may help someone else… thus making it all worth it! I didn’t realize I couldn’t just stop writing. I need to continue to write about my experiences, …and that is where my web designer came in.
For those that don’t know my web designer, she is my wife Pam, the one by my side and my caregiver! For the Blog, she does the majority of the photos, art work, research, and some ghost writing to make the blogs more interesting! Pam reminded me I just couldn’t stop writing the blog because I was doing well and feeling great! She said there was so much more to share, and people who could use the help! Every week she would encourage me to write more and to share my experiences! So I decided to write at least one blog a month, on the first Tuesday of the month. I don’t know why I picked that day, I just did.
So this month, I will try to explain the importance of a Support System or Support Group!
With there being no cure for Parkinson’s it can be frustrating and depressing. Having the support of family, close friends, and care givers is wonderful and helpful. But having support from other folks with Parkinson’s is different!
I participate at the Covington, WA Rock Steady Boxing (RSB). It is a non-contact boxing-themed exercise therapy to reduce, reverse or delay the symptoms of Parkinson’s. That is a mouth full! But basically RSB is an exercise program specifically designed for PD patients to help them with walking, balance, and overall movement. But this group of people are also a community that deals with all the other issues that are involved with Parkinson’s.
At RSB, outside of the Coach and her helpers, EVERYBODY has Parkinson’s! In addition to movement exercises to help with balance and coordination, we also do our boxing drills to help with strength building, coordination, cognitive and balance issues. We also have a daily “Get to Know You” question where we learn different things about each other. And with approx. 40+ members, in all degrees of the Parkinson’s rating scales, many are able to ask, or get answers to questions dealing with different symptoms or conditions. I have heard some very personal information shared between members. I feel it is because we are all suffering with PD and are willing to help each other in any way that we can. We may not be a family related by blood, but we are a Parkinson’s family! We talk about meds, lifestyles, doctor appointments or procedures, driving limitations, movement difficulties, sleeping issues, violent dreams, clinical trials, DBS … pros and cons, and almost anything you can think of… there is probably an associated method of doing it with different stages of Parkinson’s.
Just as exercise and medications are key to living well with Parkinson’s disease (PD), maintaining emotional health is essential to your physical health.
Anxiety and depression are two of the most common mental health symptoms that affect people with Parkinson’s. Nearly half of all people with Parkinson’s have experienced one of these issues.
How to build a strong support network here
When it comes to relieving stress, more giggles and guffaws are just what the doctor ordered. Here’s why. Read here
We need each other … more than we may realize. We are a community!
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