Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Hi: My name is Twila and my husband and I live in Nova Scotia, Canada. My husband was diagnosed with olivopontocerebellaratrophy in November of 200l. We have been struggling with it and he is failing fast. We are going to the Mayo Clinic in Rochester, Minnisota in July for further testing because his parents are not able to accept the diagnosis. I am hoping that they will be of some help there. If anyone has any advise I sure could use some. We are trying a lot natural alternatives. We have been doing acupunture since his daignosis. Along with massive amount of vitamins and proteins shakes because of his lack of food intake. He is also hypoimmunoglobanemic and suffers from acid reflux. The doctors are concerned that because of the lack of feeling in in throat he may asperate into his lung and cause a lung infection which has already happened once. Please reply with any help. All replys will be greatly appreciated. Twila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Twila, Often speech therapy helps with swallowing problems. The same thing applies to any muscles, they need to be exercised or they tend to atrophy. Is he taking Sinemet? If so, massive doses of B vitamins may interfere with the Sinemet getting into the brain. There is little scientific proof that any supplements really help as most of them can not cross the blood/brain barrier even after they get into the blood. A balanced diet is much better than overloading on a few vitamins such as vitamin E. Taking 400 IU of vitamin E per day, may help your heart, but effectsa of more than that as a supplement is doubtful. The other thing you can do is make sure he drinks (swallows) 2 litres of clear liquids per day. You must watch carefully for infection. Any sudden worsening of symptoms (like extreme fatigue, loss of movement, changes in heart rate) can mean he has an infection. Temperature is NOT a good indicator of infection in MSA patients as most have lost their autonomic control. Take care, Bill Werre Virginia, USA ------------------------------------------------- barnyardchick2 wrote: > Hi: > > My name is Twila and my husband and I live in Nova Scotia, Canada. > My husband was diagnosed with olivopontocerebellaratrophy in > November of 200l. We have been struggling with it and he is > failing fast. > > We are going to the Mayo Clinic in Rochester, Minnisota in July > for further testing because his parents are not able to accept > the diagnosis. > > I am hoping that they will be of some help there. > > If anyone has any advise I sure could use some. > > We are trying a lot natural alternatives. > > We have been doing acupunture since his daignosis. Along with > massive amount of vitamins and proteins shakes because of his > lack of food intake. > > He is also hypoimmunoglobanemic and suffers from acid reflux. > The doctors are concerned that because of the lack of feeling in > in throat he may asperate into his lung and cause a lung infection > which has already happened once. > > Please reply with any help. > All replys will be greatly appreciated. > > Twila > > If 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 June 15, 2002 Report Share Posted June 15, 2002 Hello Twila, My name is Jan and I live in Arizona. My husband has MSA with symptoms since 1997. He is in a wheelchair now and very dependent on others for his care. He also tried acupuncture for a while and all it did was decrease the bank balance. Then he tried chinese herbal medicines which tasted so bad I thought he would choke everytime he took them. We have stopped all alternative treatments and now use physician prescribe meds to treat symptoms. I know if my husband's parents were alive when he was diagnosed it would have been very difficult for them to accept the dx as well. I guess it never hurts to get another opinion. After that, everyone will have to come to terms with the diagnosis. It was hard the first time I had to say that what my husband has is terminal but it needed to be said. Our children are now able to acknowledge that it is terminal and it has helped them realize that " now is the time " to be with their dad. You are in my thoughts as you deal with all of this and please know that there are many of us living through this with you. We will be here for you. Hugs, Jan > Hi: > > My name is Twila and my husband and I live in Nova Scotia, Canada. > My husband was diagnosed with olivopontocerebellaratrophy in > November of 200l. We have been struggling with it and he is > failing fast. > > We are going to the Mayo Clinic in Rochester, Minnisota in July > for further testing because his parents are not able to accept > the diagnosis. > > I am hoping that they will be of some help there. > > If anyone has any advise I sure could use some. > > We are trying a lot natural alternatives. > > We have been doing acupunture since his daignosis. Along with > massive amount of vitamins and proteins shakes because of his > lack of food intake. > > He is also hypoimmunoglobanemic and suffers from acid reflux. > The doctors are concerned that because of the lack of feeling in > in throat he may asperate into his lung and cause a lung infection > which has already happened once. > > Please reply with any help. > All replys will be greatly appreciated. > > Twila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Dear Twila, My heart goes out to you in this time of need. I have been diagnosed with corticobasal ganglionic degeneration. I understand how if parents find it hard to accept his diagnoses because I have family whom have done that same thing. I know that it doesn't help you though because you have to be realistic in this diagnoses. I am glad that you are going to the Mayo Clinic. It might be able to help his parents also to realize you are doing everything you can for your husband and do not want this diagnoses for him either. So many emotions go on with these horrible diseases. I think we have been through all of them more than once and probably will continue going through them again. I wish I could tell you what is best for your husband as far as medically but I am not a doctor and the best thing you can do is whatever your doctor tells you to do. It would have been wonderful if alternative therapy had worked for your husband and others who have tried them. I believe that all the preservatives and pollutions that we now have has caused alot more of the diseases to progress and some it has been worse on some systems more than others. Like I said I am not a doctor only speculating. Personally, and I mean personally, I believe that support and prayers is the best thing for both of you right now. I can do that for you both and have and will continue to do it for all the others in this support group. May God bless you always, Belinda > Hi: > > My name is Twila and my husband and I live in Nova Scotia, Canada. > My husband was diagnosed with olivopontocerebellaratrophy in > November of 200l. We have been struggling with it and he is > failing fast. > > We are going to the Mayo Clinic in Rochester, Minnisota in July > for further testing because his parents are not able to accept > the diagnosis. > > I am hoping that they will be of some help there. > > If anyone has any advise I sure could use some. > > We are trying a lot natural alternatives. > > We have been doing acupunture since his daignosis. Along with > massive amount of vitamins and proteins shakes because of his > lack of food intake. > > He is also hypoimmunoglobanemic and suffers from acid reflux. > The doctors are concerned that because of the lack of feeling in > in throat he may asperate into his lung and cause a lung infection > which has already happened once. > > Please reply with any help. > All replys will be greatly appreciated. > > Twila Quote Link to comment Share on other sites More sharing options...
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