heide-miller
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I visit my ALS clinic in Toronto annually. That is a 2 hour plus drive for me and why I go only once a year. A second visit is done virtually. I’m by nature a problem solver and many years of doing Yoga mean I am able to ‘listen to what my body needs’. So often in my interaction with the doctors there, I simply get confirmation that what I am doing is appropriate – but the fact that they are able to to confirm gives me great confidence and ease. And the fact that they are available at any time to address my concerns is invaluable.
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Thank you once more Len, you are an excellent wordsmith. I have always delighted in language well used, that comes from introspection and with sensitivity – wish I could do as well. Like you, speech is becoming increasingly difficult for me, and I resort to the written word – email for correspondence with friends, and a journal for my personal ‘therapy’. I hope your wife won’t mind my saying ‘you are a man after my own heart’. Your memoir will be worthy of publication and may give hope and encouragement to many. Best wishes to you and to all participants in this discussion.
Heide
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Just read the three comments above, and appreciate the sentiments expressed. My extensive garden was my pride and joy – having moved to accommodate my mobility issues, now the garden is tiny and my sister (and caregiver) does the digging. I used to enjoy book club discussions, but my speech has deteriorated to the point that all discussion is very difficult. I loved to cook and make multi-course dinners for friends, now I need a sous-chef just to collect the ingredients from the fridge/pantry.
And so at times , I feel NO joy whatsoever – only anger and regret. Then I try very hard to remind myself that I can still enjoy the flowers in the tiny garden and planters, I can still read and enjoy a good book, and that my knowledge of cooking and seasoning enhances our meals. And sometimes, not always, that does the “trick”. It has always expressed the mantra that “less is more”, now I am challenged to live by it.
Thanks for all the sharing and good advice from this site !
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I know what you mean and how you are feeling about this. I have PLS, not in a wheelchair yet, but my mobility and speech are severely affected. I also have a close friend with MS, totally bound to her wheelchair and unable to use her hands.We agree that disability comes with a cloak of invisibility – few people are able , it seems, to accept one and interact sincerely.They are afraid. We just have to keep looking for those few !
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Beautiful, sad, and hopeful all at once – thank you so much for sharing your thoughts.