July 31, 2017
Welcome to summertime! Here in southern Ontario, we are enjoying a much more moderate summer than we baked through last year. This weather will help many of us with muscle difficulties live a little easier. You may find some movement is easier with have fewer layers of clothes. When the temperature increases, our muscles tend to do less tensing and more relaxing. We hope this summer finds you comfortable and as healthy as you can be.
Our annual Freedom to Move walk event was a great success. 95 participants enjoyed beautiful weather, shared a pleasant walk, lunch and great prizes.
We had too many prizes, donors and winners to acknowledge everyone, unfortunately. Liz Everett did a great job of recording raffle prize winners and donors. Thanks so much for all you did, Liz! But Liz was unable to get full names of winners and missed some donors, simply because of the speed the event was moving at, as we were coming to the end of the day. We must try to find a better way to give our donors the credit they are due for helping us raise financial support and social awareness for dystonia research.
At the end of counting all pledges, raffle, 50/50 sales, refreshment sales we raised just over $7,000.00. This is a great result from a huge effort by many people. Many members have trouble asking their friends and families for help of any kind. It takes a certain amount of nerve to take the first steps. After the first person says “yes” it just gets easier. We are all so grateful to those who have been able to step up and ask for help. And to those that give help without being asked!
Next year, Freedom to Move is booked to happen at Battlefield Park, Stoney Creek on June 9. Rose’s niece, Ashley McIntosh has offered to run the show for us next year. We welcome her offer! We aren’t sure, yet, just how much she will be doing, but I hope the membership will rally behind her to help keep this event growing. Ashley has experience in Pilates and yoga training. She has a ‘blog’ regarding physical fitness, stretching and well being. She is very familiar with dystonia and she has attended many of our walk events.
At the SEPT. 16 meeting, we have a young person coming as a guest. Her name is Jessica Belgrave Sookhoo, she is working in the Brain Studies program at Mohawk College. She has volunteered at an Oakville hospital with rehab in the physio therapy department. She also has experience with neuro rehab patients such those who have suffered from Stroke.Jessica would like to learn more about movement disorders and is coming to the meeting to learn. Our September gathering will be her first step in that direction.I hope you will be able to come to answer her questions about the group, about dystonia, on Sept 16.
Some of you may have seen an article recently regarding a surgery called Radio-Frequency Ablation.It was used, in this instance, on a young Brazilian man who suffered from a focal dystonia which stopped him from playing his guitar. He even played his guitar while the procedure was underway. Having done some research about radio frequency ablation, I found that it is a common procedure that is done in the US. I don’t know about Canada. I had never heard about this surgery, but I did find a link from UCLA that describes how it is used for trigeminal neuralgia.
Some of our members may find this interesting : http://neurosurgery.ucla.edu/dbs/radiofrequency-ablation
Our last meetings of 2017 will be on November 4 and December 2, at St. Peter’s Hospital, Hamilton.
Hoping to see you in September!
Laurie Bell
www.dystoniacanada.org/hamilton