LIVING with multiple system atrophy (msa)

March 31, 2012

Celebrating 2 Years with My Communication Circle Friends!

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 →

2 Comments

Filed under Blogging, Communication Circle

January 31, 2012

My Terrible, Horrible, No Good, Very Bad Day!

Editor’s Note: I wrote this post in September 2010, saved it in draft, and promptly forgot about it. So here it is —-

You may know that I’ve borrowed this title from a children’s story we loved to read to our kids “Alexander and the Terrible, Horrible, No Good, Very Bad Day!” Well, I had that kind of day a week ago on Wednesday. Maybe I should have seen it coming. I have a new symptom – ‘dropped head’ due to weak neck muscles, plus I’d been feeling dizzy lately.

Continue reading →

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Filed under Exercise, Family, MSA, Socialize

January 22, 2012

Every Culture has its Own Swear Words

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 →

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Filed under MSA, Symptoms

January 3, 2012

Review of 2011 Blog Statistics

The 2011 annual report for ‘LIVING with msa’ was prepared by my blog host WordPress.com.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 10,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

Speak Up! Better Speech for People with Parkinson’s

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 →

My Summer was a Roller Coaster Ride – Part 2

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 →

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Filed under Blogging, Communication Circle, Family, MSA, Speech, Symptoms, Travel

September 12, 2011

My Summer was a Roller Coaster Ride – Part 1

I was lamenting that I hadn’t posted since May.

But I quickly realized that a lot had happened in my life June through August, with many highs and some intense lows. You might say that i was on a wild roller coaster ride. That ride came from four intense, parallel experiences:

the failing health of my Mom, still living in her own condominium at 93
a big push to get a communication circle website up and running
MSA symptom changes: loss of muscle mass, plus more mobility, speech & swallowing issues
our efforts to gather the Paul & Valerie Walsh clan together in the B.C. mountains

I noted above that these were parallel activities. You will see after I provide you with more details. So that the post is not too long, I have addressed #1 and #2 in this post (Part 1) and will address #3 and #4 in Part 2 (will post later this week). Continue reading →

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Filed under Blogging, Communication Circle, Family, MSA, Speech, Symptoms, Travel