Chris Manning
Forum Replies Created
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What all this says to me is exactly what everyone already knows – how different we all are. What works for me may not work for you; neurologists in Canada may not prescribe the same regime for me as they do for you in the US or England or anywhere else for that matter.
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I started with levadopa but it didn’t seem to help me. When I switched neurologists, the new one put me onto amantadine 100 mg three times a day and it really helped. Last time, the neurologist suggested adding two levadopa/carbidopa 100/25 mg three times a day. Taking this many levadopa made me unbelievably nauseous so, after consulting my pharmacist, I have cut the levadopa back to one tablet three times a day, in addition to the amantadine. I find that I really feel much better so I am happy with this part of the result. What I am not so crazy about are my legs, which are covered with red spiders webs, a side effect of the amantadine, so I am too embarrassed to wear shorts again. The mottling was also initially accompanied by swollen ankles so for a time I had to wear compression socks but this has now worn off.
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I agree – Sarah King is really great.
Here is another website that has some ideas that may help:
https://parkinsonsdisease.net/living-with-pd/overcoming-freeze/
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Freezing is one of the most annoying symptoms of Parkinson’s. There are few things more frustrating than to be standing, unable to move as the elevator doors close or the phone in the other room is ringing and you can’t get to it. I have tried every way of getting over the problem suggested by various neurologists, physiotherapists and university professors. Freezing of gait (FOG) is the result of the degeneration of the neurons in the substantia negra which are responsible for initiating movement. The only way to start moving is either to use some cue, for example, through the use of a laser pointer, or simply by concentrating on walking, in other words, giving your brain time to use another neural pathway since the automatic response is no longer available.
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The Brian Grant Foundation has some good videos on boxing exercises which you can do at home. You can find them at https://briangrant.org/exercise-videos/ He won’t keep bugging you for donations all the time either!
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I am a great believer in boxing for people with PD – it’s excellent for big movements, cardio, footwork and balance beside the need to concentrate on each of the drills. The YMCA in Oakville, ON, started a Rock Steady Boxing program in October but I found there was not enough time spent on the actual boxing so now I am working with an instructor at a boxing gym to develop our own program. Our aim is not only to offer the program to people with PD but also to those with other kinds of neurological problems, stroke victims, etc.
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My voice has definitely become much quieter and more indistinct, to the point where people are finding it difficult to hear what I am saying. A speech therapist has given me exercises that I am supposed to do twice a day (when I remember) and my wife is helping me to speak more loudly and more slowly. I would guess that about one-quarter to one-half of the people in our PD Support Group have similar problems.
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I live in Oakville, Ontario.
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Hi Geraldine: I live in the Toronto area. It took several months for me to see my first neurologist and she was exactly as you have described. After my second visit, I decided to try someone else. I was incredibly fortunate to have been able to get in to see a neurologist at the Movement Disorder Clinic, Toronto Western Hospital, quite quickly (TWH is the best hospital in Canada for PD and the normal waiting time is 2 -3 years!). She could not have been more wonderful – answering all my questions and those of my wife. So if you are not happy where you are, try someone else.