October mumblings

“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.” –  Marcus Aurelius

Even though I have to drag my legs out of bed and then drag my whole body over to my scooter seat after putting on my slippers with hands that will barely hold the weight of one, I am still extremely grateful that I am alive and able to drag my legs and body about.

When I hear my husband, Ron, moving about in the morning, I’m also very thankful that he is alive and still loves me. At this stage in our lives our greatest fear is that we will lose one or the other of us.  We know it is inevitable that one of us will go first and I am hoping it is me because there is no way on earth I want to breathe without him.


Now for something not quite so daunting: someone asked me how the CMT Niagara support meeting that I held in September went and I have to tell you that I feel it was a success even though I had close to 30 people who said they would come and only half of that number did.  However, we filled the three hours easily by going around the circle and asking people to talk about their CMT and their lives. It was truly wonderful to hear people talking about what they have accomplished in spite of CMT. We also had a young man aged 11 or 12 with us and several people brought delicious homemade cookies, so many I was even given some to bring home.  I gave out some questionnaires and quite a bit of literature on CMT and I also put up a CMT Niagara Facebook page to go along with our CMT Canada page.

I get as many people from around the world asking to join CMT Canada as I do Canadians but CMT Canada is just for Canadians to share information about what’s going on in Canada regarding CMT. Canada has such a small population, only 36 million, mostly spread out along the border to the United States across thousands and thousands of miles from the Atlantic to Pacific that it isn’t easy for us to find each other but slowly people are finding CMT Canada and sharing information.

I hope to have another CMT Niagara support meeting next spring or perhaps a barbecue next summer for anyone in the Niagara area with CMT and their families. I’m not getting any younger and holding a meeting takes a lot out of me and when people say they’re coming and don’t show up it means that I’ve done a lot of work for nothing. My friend Lynda accompanied me to give things out and move about as I can’t.  She is veteran of many, many committees and boards and gave me some sage advice: “Plan for many, expect few.” Lesson learned.


One of the readers of this blog told me that she enjoyed seeing inside my home and I’ve taken a few pictures of my bedroom where I grow a few orchids under lights, keep my collection of strange and animated dogs, (I’ve just found a tiny metal poodle at an antiques show – poodles are hard to come by – the hound, above, is sorrowful, to say the least) and watch a lot of PBS and, sometimes, sleep. It is also my habit to read after I wake up at night to use the urinal. I don’t go to the bathroom because it would wake Ron up and he has a terrible time getting back to sleep so, in the privacy of my own bedroom, I use a very lightweight urinal and he empties it for me in the morning.  However, after taking care of what woke me up, rather than lying there trying to turn my mind off, I open my Kobo reader and read for about a half an hour, usually between 4 and 5 a.m. I’ve read several hundred books in the wee hours of the morning and am now almost finished Sophie’s Choice. I’ve have never seen the movie but want to after reading the book.img_1876


Speaking of books, I am just about to start chapter 31 of my autobiography (CMT and Me) and calculate that I probably have three or four more chapters to go and then I can start the editing stage. I have set a deadline to have it up on Amazon by my 75th birthday on April 16, 2017.  I’ve been at it now for more than two years, and am writing almost exclusively using iSpeak on my Mac computer as my hands have really deteriorated over the last year and a half. My editor says it’s a good read, so I’ll keep poking along. I am enjoying the journey, for the most part.

Does anyone know how to contact the CMT poet, Ann Gasser?  I’d like to use one of her poems in the book and need to contact her about it.

Wishing all of you good health and please consider getting a flu shot.

Till next time,



6 Responses

  1. Barbara from Salem, Oregon sending you a hug & TY for your positive messages. When I awake in the morning after a decent night’s sleep I feel normal……then when I whistle for my hubby to come assist, reality hits. Like you, I feel so fortunate having this amazingly kind husband who still loves me even though…..he does everything for me as a child has needs. Sometimes I struggle to hear him breathing in the dark of night……his C-PAP lets me know all is OK. It is my hope to die first as I cannot imagine life without his kindness & patience……he feels the opposite as I keep him grounded, on track & organized, he says. Now we are both 68 & mostly healthy other than some aches, pains, my weakness progresses slowly. TY for the photos included with your message.

  2. Thanks for your comments Barbara. I know you and your hubby are very tight team. We are truly blessed to have such terrific men in our lives.

  3. The book should be a hit for sure, because you come through so well in your writings. Your care and concern for thousands of people have made lives better all over the world. But sure to put me on the mailing list for your book list. Love, Joanne

  4. Thanks Barbara and Joanne for your comments. I can’t believe I’m about to begin chapter 31 of my book. I do all the research through my journals first, make copious notes and then I sort of rev my brain up to a point where the words are almost coming out my nose and I pull my scooter up to my computer and it just comes pouring out. I’m using MacSpeech for everything now except for small corrections as my hands are really shot. It might take me two weeks to write a chapter but it is all cogitating in my brain every night and every day the next bunch of paragraphs are ready to go. I can’t believe I’m actually going to get this book done but perhaps I shouldn’t say anything until I’ve put the final period on the last page. One never knows what the future has in store. Thanks again my dear friends.

  5. My daughter has CMT how does she get to go to one of these meetings if she wants to cause I haven’t told her about them until I hear back from u thank you

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