It has been some time since I took to blogging. The year seemed to pass by in a flash....so many things to do, new things to experience, and just the daily things that sometimes swallow up time.
My focus this year in the area of Parkinson's Disease, seemed to take on a virtual life all of its own. I began the year with attending my MDS appointments through TeleMedicine. I would go to the hospital in a nearby town, where a nurse took information updates, faxed to my Doctor, and then met with my doctor through the computer flatscreen.
For the most part, this was such a stress free, convenient way to connect with my MDS , who had moved his practise farther away due to government funding cutbacks. So this was ever so convenient. Until....one specific appointment arrived...., and was cancelled after I waited 40 minutes. A blackout in the Doctor's building. I was re booked, and returned 2 weeks later.....but a nurse was unable to make the connection, so for the second time, I had to rebook my appointment.
Technology, though very convenient, is not perfect.
My second huge break in technology on line, came to me from Diane, a woman who I had made contact with through the Parkinson's Canada Association. I had turned to her last year in regards to finding a local chapter of a Young Onset Parkinson's Disease Support Group.
In a renewed excitement, she contacted me this year about facilitating an Early Onset Virtual Support Group. It would be the first of its kind in our locality. Wow! What an idea....bringing support groups to the comfort of your own home. Of course, I was in....without a doubt.
A group had been established on the East Coast of Canada by a gentleman named Peter. I was invited to sit in on a meeting through a on line application, Zoom. Forgetting the hour difference, I decided to wash my hair, shower, and while I waited, pop into the Zoom room to make sure I was connected. With my hair wrapped in towel, I clicked my link....and surprise!!.....there I was on one small screen with 7 others, and the facilitator, on the main screen. Oh my!! The link worked all right, but I hadn't taken into consideration the hour time difference between the provinces.
I was welcomed immediately. The group began their session by updating themselves with a "check-in". It was a great way to share experiences of the past month, including symptom or mediation changes everyone had experienced.
After sitting in on a couple of sessions, I had a good grasp of how the meetings were run. Diane, from PD Canada and I had done a run through on Zoom, and felt comfortable enough to begin our own Virtual Chapter.
To date, we have 19 members. It is such a pleasure to be able to get comfy, throw on pajamas or track pants, and just hunker down for a delightful evening of sharing and learning from people who are going through the same things you are. And each time we meet, the connections and kinship just continues to grow.
Last month for example, one member mentioned they were taking Music Therapy. This peaked interest for many, so using the member's contact, I was able to book a Music Therapist to speak with our group at the January meeting.
For most of our members, it is one of the first support groups they have been able to attend because of their location, mobility, or other factors.
It is hoped that the success of the East Coast group, and now Central Ontario;s group, will be the start of Canada wide virtual groups. So, although I sometimes get frustrated with keeping up with the ever changing technology...it definitely can improve the ability to meet and open a whole new world of knowledge and social interactions that would not be an option otherwise.
As I believed from the very beginning of my diagnosis....arming myself with knowledge would be the best way to fight this disease, Knowledge being power...and supporting others to feel more powerful, well, that is what it is all about. Taking control of our own PD helps us to come to terms with our reality. Having others experiencing it with us, through support, is truly, a bonus.
