Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 I have been reading the posts and have given my thoughts on subjects but have not introduced myself. I am Ann , my diagnoses with CMT was at the age of 50 yrs at the well known University of Michigan Hospital in Ann Arbor, Michigan and now I am 76yrs. Started out with inserts in my shoes and have progressed to AFO's for the last 7 years. I went to the Wayne State Uni. CMT clinic where I saw Dr. Shy and diagnosed to have CMT 2. I continued to see both health centers. At Dr. Shy's clinic in Detroit, Michigan there is no charge. They do use your insurance if you have it but no CO-pays for you to pay. This is where I had a blood test and I showed that I did not have any of the other types of CMT, so I must have CMT 2. I just called , their Genetic counselor concerning the testing for CMT 2 and she said the new test is only for CMT 2-E and most people do not have this type. Does not recommend it for me. I was able to continue to work as office manager in a dental office (sit-down job most of the time) until I was 72 yrs. No one else in my family seems to have CMT so I wonder if that is what I really have. My feet and legs up to the knees steadily become weaker and numb. In just the last few months the numbness has progressed into the thighs and I can hardly feel the floor under my feet and my balance is very bad. I hesitate to drive because I can hardly feel the pedals. I tried had controls but at the time I thought I would not be able to handle them. I was on neurontin then and always thought that it made me on edge. I understand that neurontin just treats the symptoms does not cure? I have now gone off it and plan to try the hand controls when spring arrives in Michigan. I saw a neurosurgeon, had an MRI and they say I have no back problems that would cause the numbness in my feet and legs. I do have arthritis. No spinal stenosis. It has been two years since my last nerve and muscle testing and have make an appointment to have this done next week. MY PROBLEM. How do you handle the possibility of losing your ability to do things for yourself? My independence! Some of you have had this happen. . How do you do it? Where do I find help. Sorry this is so long, but 76 yrs is a long time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 In a message dated 1/18/02 2:50:29 AM, jj3630@... writes: << MY PROBLEM. How do you handle the possibility of losing your ability to do things for yourself? My independence! Some of you have had this happen. .. How do you do it? Where do I find help. >> When that happened to my mom, in her 70s, type 2, I did all the errands so she was able to stay in her own home for the next 10 years. She passed away in her own bed, with no hospitalization, the way she wanted it. Numbness was my mom's main symptom at first, followed by weakness and poor balance. My main symptom at first was numbness. The alternative would have been a retirement home. That is NOT the same as a nursing home. A retirement home provides a private apartment and some or all meals, but the person is independent. Usually there is a van available to take people to appointments or shopping. Several of my aunts lived in retirement homes, one for 26 years, and they were happy there. If you can afford it after working all those years, I highly recommend it. A retirement home, NOT a nursing home. It's best to apply before you need a walker. Each person has to pass an entrance test to see if s/he is truly independent. Seattle has an office for finding helpful information for Seniors. Perhaps your city has one, too. Kathleen Seattle USA http://www.icewindow.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2002 Report Share Posted January 19, 2002 Here in Ft. Myers, Florida it seems every other structure is a Retirement Home. tt Hotels have several throughout the nation. The one where I have the blood pressure clinic has 3 seperate facilities. Independent Living, Assisited Care, which ranges from just reminders of med time or appointments to help with bathing. The Nursing Facility is like a nursing home but with a different twist. If you can ambulate, you go to the dinning room to eat. They do not want anyone veging out in their rooms, they try to keep each client as mobile as possible and comfortable. I have worked in Nursing Homes in my younger years, I would not work in one now. But the Retirement Centers here if I could I would work in any one of them. But the bottom line to all of this is HOME is the best place to be. There are many agencies that offer from homemakers; cooking meals, light house keeping. companions: just visit, maybe ask if they have taken their meds. Shoppers: Either take the person shopping or do the shopping for them. Home Health Aides, coming in the help dress or undress, shower or any type of bath needed. Changing disposeable under garments; skin, foot, hand and hair care. they may even fix a meal or feed them if needed Certified Nurses Aides: comes in to do what a HHA can not do such as fix up the weeks medication to be given. Registerd Nurses: Give the support that is needed, checks on the progress and reports to the Doctors. To me it is worth every penny it cost, but if you don't have it you don't. There are Private Individuals that also do this work. But be sure to check their credintials. If they claim to be a CNA they will have a card with their picture and information on it. Home Health Aides are also requried to be certified. Thats my thoughts on this.. There is no place like home unless there is no one to help. Then retirement centers...never Nursing Homes. Susie > << MY PROBLEM. How do you handle the possibility of > losing your ability to > do things for yourself? My independence! Some of > you have had this happen. > . > How do you do it? Where do I find help. >> > > When that happened to my mom, in her 70s, type 2, I > did all the errands so > she was able to stay in her own home for the next 10 > years. She passed away > in her own bed, with no hospitalization, the way she > wanted it. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2002 Report Share Posted January 21, 2002 I drive with hand controls and have for the last 8 years. They really opened the world to me. I've been able to take myself anywhere I want and gone a few places that none thought I should go. Don't let anyone stop you from going and doing what you like or dream to. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2002 Report Share Posted January 21, 2002 Thank you S. from ann I tried the hand controls and can you believe!! I could not handle them. The PT wouldn't even let me out of the parking lot I was on neurontin then and I believe it made me very restless. I am off the neurontin in hopes I will be able to try again when this Michigan weather stays clear. I have contact with a company that sells them and will not go through the PT. Quote Link to comment Share on other sites More sharing options...
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