Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Hello Everyone, I contacted this group a few weeks ago and received volumns of information. I have just been reading and trying to digest it all. It is all so devasting and I am struck by your wonderful support toward each other. I still don't understand it all, but one thing I do understand is the trauma you all undergo trying to get the Doctors to get an accurate diagnosis. My sister has gone through the same experience. First they said her cerebellum was shrinking, then they said it wasn't. The MRI did not show a problem. Unfortunately, I don't know of all the meds they have given her but I was beginning to think she was over medicated. Needless to say, nothing helped. We live in Juneau, Alaska which is the Capital and has a population of about 36,000. My sister, Delia, age 69, had been trying to find out why she kept falling down, or why her eyes would water continuously. For years, she has had extremely high blood pressure but she always reacted to the medication after a while and they would change it. Then she would get a cough that would last for months. None of the information I have read in the multitude of e-mails, complain about feeling hot - especially in the lower part of her legs. During this past summer she has gone from walking to a walker, dragging one leg and scooting the other. Her daughters got her a wheelchair so they could get her out. She sits outside alot to keep cool or keeps the window wide open. Her poor husband like it warm. I understand that Juneau has a Parkinson's Disease support group here and Delia was going for the first time last Thursday. She has a computer but she has trouble remembering how to use E-mail and she has trouble seeing ,as well. This MSA is truly a devasting disease and I pray to the Lord above that they find a cure, and that more time and money be devoted to finding an early diagnosis. My sister will have good care and lots of family, church, and community support. This is a wonderful place to live--the only drawback is having quick access to the large medical facilities. It's about a 2-hour flight to Seattle, WA. Less than that with a good tail wind. Thank you so much for all the valuable information. It all helps and I will be better able to understand and help her. I'm sorry I don't have much to offer, but be assured I am praying for comfort and healing for you all. Grace and Peace, Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 You offer friendship and care and that is one of the most needed help you can get. Timo My Sister Hello Everyone, I contacted this group a few weeks ago and received volumns of information. I have just been reading and trying to digest it all. It is all so devasting and I am struck by your wonderful support toward each other. I still don't understand it all, but one thing I do understand is the trauma you all undergo trying to get the Doctors to get an accurate diagnosis. My sister has gone through the same experience. First they said her cerebellum was shrinking, then they said it wasn't. The MRI did not show a problem. Unfortunately, I don't know of all the meds they have given her but I was beginning to think she was over medicated. Needless to say, nothing helped. We live in Juneau, Alaska which is the Capital and has a population of about 36,000. My sister, Delia, age 69, had been trying to find out why she kept falling down, or why her eyes would water continuously. For years, she has had extremely high blood pressure but she always reacted to the medication after a while and they would change it. Then she would get a cough that would last for months. None of the information I have read in the multitude of e-mails, complain about feeling hot - especially in the lower part of her legs. During this past summer she has gone from walking to a walker, dragging one leg and scooting the other. Her daughters got her a wheelchair so they could get her out. She sits outside alot to keep cool or keeps the window wide open. Her poor husband like it warm. I understand that Juneau has a Parkinson's Disease support group here and Delia was going for the first time last Thursday. She has a computer but she has trouble remembering how to use E-mail and she has trouble seeing ,as well. This MSA is truly a devasting disease and I pray to the Lord above that they find a cure, and that more time and money be devoted to finding an early diagnosis. My sister will have good care and lots of family, church, and community support. This is a wonderful place to live--the only drawback is having quick access to the large medical facilities. It's about a 2-hour flight to Seattle, WA. Less than that with a good tail wind. Thank you so much for all the valuable information. It all helps and I will be better able to understand and help her. I'm sorry I don't have much to offer, but be assured I am praying for comfort and healing for you all. Grace and Peace, WillowIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Willow, Any good fishing u[ there? Welcome to the group. Dr. ray -- My Sister Hello Everyone, I contacted this group a few weeks ago and received volumns of information. I have just been reading and trying to digest it all. It is all so devasting and I am struck by your wonderful support toward each other. I still don't understand it all, but one thing I do understand is the trauma you all undergo trying to get the Doctors to get an accurate diagnosis. My sister has gone through the same experience. First they said her cerebellum was shrinking, then they said it wasn't. The MRI did not show a problem. Unfortunately, I don't know of all the meds they have given her but I was beginning to think she was over medicated. Needless to say, nothing helped. We live in Juneau, Alaska which is the Capital and has a population of about 36,000. My sister, Delia, age 69, had been trying to find out why she kept falling down, or why her eyes would water continuously. For years, she has had extremely high blood pressure but she always reacted to the medication after a while and they would change it. Then she would get a cough that would last for months. None of the information I have read in the multitude of e-mails, complain about feeling hot - especially in the lower part of her legs. During this past summer she has gone from walking to a walker, dragging one leg and scooting the other. Her daughters got her a wheelchair so they could get her out. She sits outside alot to keep cool or keeps the window wide open. Her poor husband like it warm. I understand that Juneau has a Parkinson's Disease support group here and Delia was going for the first time last Thursday. She has a computer but she has trouble remembering how to use E-mail and she has trouble seeing ,as well. This MSA is truly a devasting disease and I pray to the Lord above that they find a cure, and that more time and money be devoted to finding an early diagnosis. My sister will have good care and lots of family, church, and community support. This is a wonderful place to live--the only drawback is having quick access to the large medical facilities. It's about a 2-hour flight to Seattle, WA. Less than that with a good tail wind. Thank you so much for all the valuable information. It all helps and I will be better able to understand and help her. I'm sorry I don't have much to offer, but be assured I am praying for comfort and healing for you all. Grace and Peace, WillowIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
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