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Which advice would you give to someone who has just been diagnosed with Primary Orthostatic Tremor?
See some advice from people with experience in Primary Orthostatic Tremor to people who have just been diagnosed with Primary Orthostatic Tremor
I was DX with POT 16 years ago and it definitely has progressed over the years. I have been confined to a wheelchair, as I cannot stand or walk with out holding on to something. I have taken a good many falls.
However I have moved to a leisure home because I was unable to care for my home in spite of hired help. Since a year ago I joined a gym and worked hard with the GYM trainer , and have now learned through much excerize to walk with a walker, although I can't walk a long distance before the shaking in my legs and body takes over and I look for a place to sit down. None of the medications prescribed have ever worked.
It is a very dilabating condition. I am now 86 years old and my chair is my friend, as I don't see any hope in the near future for relief. I still work in the gym, trying to work on heping the balance and shaking condition. I have put on a lot of muscle in my arms and legs but the shakiness continues. I now walk with my walker, still rely on my wheelchair and have purchased an electric scooter to give a little more independence, like going out to a local grocery store with in the range of my scooter's batteries.
I have always led a very active life and spent 25 years sailing the open ocean to various countries and this didease struke me down three years after our sailing came to an end.
I have no advice to give except my motivation and determination to conquer this disease and with now doing some walking everyday with my walker has given me some hope to conquer the balance and shaking also. I am a lot stronger for my goals but it still will not go away! I check frequently on the net for some answers and it is always the same.
However I have moved to a leisure home because I was unable to care for my home in spite of hired help. Since a year ago I joined a gym and worked hard with the GYM trainer , and have now learned through much excerize to walk with a walker, although I can't walk a long distance before the shaking in my legs and body takes over and I look for a place to sit down. None of the medications prescribed have ever worked.
It is a very dilabating condition. I am now 86 years old and my chair is my friend, as I don't see any hope in the near future for relief. I still work in the gym, trying to work on heping the balance and shaking condition. I have put on a lot of muscle in my arms and legs but the shakiness continues. I now walk with my walker, still rely on my wheelchair and have purchased an electric scooter to give a little more independence, like going out to a local grocery store with in the range of my scooter's batteries.
I have always led a very active life and spent 25 years sailing the open ocean to various countries and this didease struke me down three years after our sailing came to an end.
I have no advice to give except my motivation and determination to conquer this disease and with now doing some walking everyday with my walker has given me some hope to conquer the balance and shaking also. I am a lot stronger for my goals but it still will not go away! I check frequently on the net for some answers and it is always the same.
Posted Nov 10, 2021 by Aniya f. Rishell 100
Allow yourself to grieve what you can no longer do, but don't stay there. Focus on what you CAN still do, and the many blessings you have. Learn all you can about the disorder, how others are coping, what devices can help. Can't imagine living without a stool in my kitchen now! Join, and participate, in a support group!!
Posted Dec 1, 2021 by Marie Witham 1500
