Aix-en-provence, July 2008, on a father/son romp around Paul’s favourite grape-growing region.
As many of you know, Paul died peacefully at the end of July 2012, in the midst of a vacation with his family at a cottage in Haliburton, where he could sit on the deck and watch his three granddaughters play by the lake.
As his wife (my mother) Valerie wrote in the days following,
“As you all know, Paul’s intention was always to live fully until he died. A special thanks to the friends and family who formed his Communication Circle, whose love and faithful dedication made it possible for Paul to speak, joke and inspire us all right to the end.
It has been a long and sometimes very difficult journey for all of us as a family but the love and support of so many, coupled with Paul’s determination to ‘beat the odds’ kept us all going.”
It’s a bit hard to close this blog down, but i figure it’s time to do just that. A huge thank you to all his readers who kept him inspired, and in turn, all of those around him.
Readers who are Tolkien fans will recognise the title of Bilbo Baggins’ memoirs in ‘The Hobbit’. Bilbo’s adventure culminated in the slaying of the dragon Smaug and the return of the treasure to the dwarves.
My own ‘adventure’ hardly compares, except that it was life-threatening like Bilbo’s. My ‘dragon’ was my swallowing difficulty. Going ‘there’ meant losing 45-50 pounds (plus corresponding strength and energy) from a stocky 5’7″ frame. Instead of slaying my dragon, it was bypassed via insertion of a G-Tube into my stomach. But I’m getting ahead of myself.
In the beginning
Early in 2011, as my swallowing problems first presented themselves, I began to eat less at meals since it simply took me longer to chew well before swallowing. I began to lose weight, quickly enough to move us to seek strategies to stop the weight loss. Continue reading
Filed under Exercise, MSA
My Communication Circle turned 2 in January 2012. We scheduled a full Circle meeting in March, with two main objectives (or so I thought):
- Bonnie, my speech pathologist, will lead a discussion on dealing with my new voice challenges.
- We will celebrate 2 years (and 4,000 ‘AHs’!) with wine and cake.
But my dear wife Valerie ‘hijacked’ my agenda and added a third item. Unknown to me, she had asked my Circle friends to email a brief reflection from their Communication Circle experience. Valerie’s ‘thank you’ note to my Circle volunteers summarizes the evening well. She is my guest blogger today.
- – - / / – - – Continue reading
Question 1: Is the MSA Support Community a ‘culture’? Two definitions — ‘the behaviors and beliefs characteristic of a particular social, ethnic, or age group’ — and — ‘the quality … that arises from a pursuit of excellence’ — seem to support a ‘yes’ response.
Question 2: What criteria should you use to select swear words for the MSA Support culture? You know I wouldn’t ask a question without an answer, but you will have to read on to find out.
If you are a bit squeamish, avert your eyes now, because I’m going to swear, and swear so LOUD you may even hear me through the print on your screen. To my readers with Multiple System Atrophy (especially the MSA-P type like me), you are cordially invited to swear along with me. Are you ready? Take a deep breath and let all that pent-up emotion run wild! Let’s go! Continue reading
Filed under MSA, Symptoms
Preliminary Release of a New Website Introducing a Proven, Cost-Effective Approach to Speech Therapy
December 29, 2011 (Toronto, Ontario, Canada) Bonnie Bereskin and Paul Walsh are very pleased to announce the preliminary release of a new website – Speak Up! — which delivers an innovative, cost-effective voice therapy that works. Many websites describe the problems and losses of Parkinson’s, MSA, PSP, and other neuro-degeneraive disorders, but few describe what the individual can do to maintain functioning. Continue reading
In Part 1, published September 12, I wrote that my wild roller coaster ride this summer came from four intense, parallel experiences. I addressed the first two in Part 1. Today I am addressing the third:
Coping with MSA Symptom Changes
My Multiple System Atrophy has been on a roller coaster ride all by itself. Existing symptoms change; new symptoms arise. ‘Coping with MSA’ means handling or managing each symptom successfully. New or changing symptoms increase the coping challenge. Continue reading