Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Hi everyone: I am Crabtree and I live in St. Catharines, Ontario, Canada. I have CMT 2A2. At 68, I no longer walk and my hands are badly affected, my left vocal cord is also affected and my diaphragm. I have a soft voice but I can still be heard through my writing, etc. I keep a website for tourists with disabilities to our beautiful area at AccessibleNiagara.com and I keep a blog, CMT and Me, at http://lindacrabtree.wordpress.com. To keep typing I am training MacSpeech so my longer works can be done without using my hands. I type with the knuckles of my little fingers as my hands will no longer open. I also paint in acrylics and am active with the St. Catharines Art Association as VP/web editor/publicity, newsletter editor, fundraiser, whatever. I really don't mind not being able to walk. I have two electric scooters, one in the EnterVan and one in the house and I'm used to them. I can manage with my hands the way they are although I drop a lot of things but it's the constant burning pain that drives me to distraction. It's like sitting in a pile of hot steel wool all day, every day. My bed sheets feel like sand and my clothing like hopsacking even though my slacks are lined with silk-like material. I've tried everything over the last 20 years and the best was Cymbalta but the side-effects were so bad I had to stop using it. I'll be interested in what you do for neuropathic pain. From 1984 until 2002 my husband, Ron, and I ran CMT International and we had 2200 families in some 24 countries with us. During that time I put together 103 CMT Newsletters so I know a bit about it all but things have changed and grown so radically in the last eight years that I fear I am way behind and want to catch up on the research through this group. I look forward to 2011 and getting to know you all. Thanks Gretchen, for keeping on so beautifully. Cheers and Happy New Year! C. Crabtree C.M., O.Ont., O.M.C., B.A., LL.D.(hon.) One Springbank Drive St. Catharines, ON, Canada L2S 2K1 905-685-0496 linda@... www.AccessibleNiagara.com www.NiagaraShares.com www.Crabtree.com www.stcatharinesart.com http://www.lindacrabtree.wordpress.com Community Action Award (ON Govt.) 2009 Tourism Industry Association of Ontario Volunteer of the Year 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Welcome to the group, ! Wonderful to have be a participant here and share your years of wisdom and experience with us. For CMT neuropathic pain, I take Neurontin and Methadone. I take just 2.5 mg of Methadone a day, which is half of the smallest dose, but it really helps me. I take both pills around 6:00 pm, so they begin to work by bedtime. From: Crabtree <linda@...> Subject: My introduction Date: Friday, December 31, 2010, 7:03 PM  Hi everyone: I am Crabtree and I live in St. Catharines, Ontario, Canada. I have CMT 2A2. At 68, I no longer walk and my hands are badly affected, my left vocal cord is also affected and my diaphragm. I have a soft voice but I can still be heard through my writing, etc. I keep a website for tourists with disabilities to our beautiful area at AccessibleNiagara.com and I keep a blog, CMT and Me, at http://lindacrabtree.wordpress.com. To keep typing I am training MacSpeech so my longer works can be done without using my hands. I type with the knuckles of my little fingers as my hands will no longer open. I also paint in acrylics and am active with the St. Catharines Art Association as VP/web editor/publicity, newsletter editor, fundraiser, whatever. I really don't mind not being able to walk. I have two electric scooters, one in the EnterVan and one in the house and I'm used to them. I can manage with my hands the way they are although I drop a lot of things but it's the constant burning pain that drives me to distraction. It's like sitting in a pile of hot steel wool all day, every day. My bed sheets feel like sand and my clothing like hopsacking even though my slacks are lined with silk-like material. I've tried everything over the last 20 years and the best was Cymbalta but the side-effects were so bad I had to stop using it. I'll be interested in what you do for neuropathic pain. From 1984 until 2002 my husband, Ron, and I ran CMT International and we had 2200 families in some 24 countries with us. During that time I put together 103 CMT Newsletters so I know a bit about it all but things have changed and grown so radically in the last eight years that I fear I am way behind and want to catch up on the research through this group. I look forward to 2011 and getting to know you all. Thanks Gretchen, for keeping on so beautifully. Cheers and Happy New Year! C. Crabtree C.M., O.Ont., O.M.C., B.A., LL.D.(hon.) One Springbank Drive St. Catharines, ON, Canada L2S 2K1 905-685-0496 linda@... www.AccessibleNiagara.com www.NiagaraShares.com www.Crabtree.com www.stcatharinesart.com http://www.lindacrabtree.wordpress.com Community Action Award (ON Govt.) 2009 Tourism Industry Association of Ontario Volunteer of the Year 2008 Quote Link to comment Share on other sites More sharing options...
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