Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Dear : You are having such a hard time, and I wish I could make it all better for you, but I can't. I am answering your post partly because I have answered Tenacity's with some understanding of how she feels and partly because we did discover on autopsy that Ken did not have SMA at all but Parkinson's and Diffuse Leeway Body Disease which in him caused the SMA symptoms. BUT, because we had an understanding doctor who was knowledgeable and willing to let us try anything, we had been giving him Aricept which is what is prescribed for BLBD and we had been giving him Sinemet and Comtan and Midodrine and Florinef. In other words we had been treating him for his symptoms with pretty good results for a long time. We never stopped giving him his medications because they did give him a better quality to his life than without them. I think the hardest thing we have to do in this world is watch someone we love go downhill and be unable to rescue him or her. I sometimes wondered if I loved Ken enough to let him go. I wanted him to stay and to be better more than anything in the world, and I am crying now as I write this note. I absolutely adored him, and I miss his more than I can say, but I still think he had to fight his own way, and I had to let him. I tried to make it easier for him, and I hired a driver for him when he lost his driver's license, and I hired full-time live-in help at home when it became obvious that I alone could not give him the lifestyle he deserved. With the help of our caregivers, we were able to travel in our trailer and to go to parties and out to dinner often, things I could not have managed on my own. What became most important to all of us was to keep Ken's quality of life as good as possible for as long as possible. I will not tell you that I don't sometimes wonder if he would still be here " if " I had done this or that, but I worked with my God and the doctors I trusted, and together we did the best we could. I know you love her dearly. I believe she knows that, but if I can give you advice, try not to make her do things just because she loves you. We all have to make our own decisions in our lives, and it is the job of those who love us to love us even if we don't do it the way we want them to and to " be there " for them emotionally as they go through it. Believe me, Deborah is not " giving up " ; she just wants to enjoy her time with you for a while and not have to keep enduring more tests that don't help. You are a very wonderful loving husband, and I hope you and Deborah have many good times together in the future. Love, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Well, I just saw Deborah's post and some reply's.. Now it is my turn.. Yes, I need help. My problem is the following. 1- I cannot and will now wait for an autopsy to find that she does not have MSA but Something else that all these Doctors over looked. 2- Yes, I got a PET Scan because from what I understand, it actually tell's if you have parts of your brain disenagranting or not, in stead of the Doctor's saying, you fit the MSA portion of this PD disease. After going to the Washington Forum and listing to the Doctor from England.. It made me think,, Who Is Right.. In England, one paticular Doctor who spoke there said to find out about PD, the first thing he does is proform a FDopa PET SCAN, and If that proves positive, than he Does a Glucose PET SCAN to determine if you have MSA as well... Here the Fdopa is not approved. Than you have a Glucose done and they can't read it. WHAT IS WRONG WITH THIS PICTURE !!!!! I want some answers. WHAT IF IT IS SOMETHING ELSE.. Oh, I belive she does have PD, that I personally can live with.. But I need some honest answers. And I can not let Deborah give up hope untill they are answered. Not by Guessing... Which from what I have seen so far is exactly what they are and have been doing.. There are things going on with Deborah that dont FIT.. I read and listen a lot and than compare... Too much doesnt fit.. If any of you out there have any suggestions, Please let me know.. You are welcome to write me off line any time.. Thanks, any and all of your suggestions will be overwhelming welcome.. I just LOVE my Wife and am not ready to say,,, OK...I hope you understand.. " tenacity's man " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 , There is no cure for PD at this time. They treat the symptoms, not the cause. They are currently working in other countries on a possible cure for PD and have cured mice and monkeys of PD like symptoms through stem cell research. Many of us are hopeful that they will find a cure for PD within years. IF stem cell research provides a cure for PD, I am sure they will try it for MSA also. A diagnoses of MSA is usually the result of doctors ruling out known diseases. MRI's can rule out many diseases as can PET scans, BUT at this point there is no 100% accurate method of defining MSA. If many neurologists have said MSA, why keep spending money on expensive tests which are going to define the problem further - especially when the treatment is the same for ALL of the "alphabet soup" disorders? PD, PSP, CBGD, ALS, MSA, MS, LBD, PAF, etc, are ALL treated by addressing the symptoms, not the disease or disorder. It is time to focus on the real problem. As early as 1981 President Reagan stopped NIH from spending $27 million on Parkinson's research and instead told NIH to put about $30 million into AIDS research. Next year (Oct. 2002- Sept. 2003) Pesident Bush is pushing Congress to identify $1.1 Billion for AIDS research and abatement. HOWEVER, he fought Congress identifying $100 million over 5 years for PD research. To me using MY tax dollars to fight one disease over another should be left to people who understand the problem, not lawyers who know NOTHING of the everyday trials that people with movement or autonomic failure problems face. I am sorry for AIDS patients, but we need research also. Take care, Bill Werre ----------------------------------------------------------------- rsetzer2000 wrote: Well, I just saw Deborah's post and some reply's.. Now it is my turn.. Yes, I need help. My problem is the following. 1- I cannot and will now wait for an autopsy to find that she does not have MSA but Something else that all these Doctors over looked. 2- Yes, I got a PET Scan because from what I understand, it actually tell's if you have parts of your brain disenagranting or not, in stead of the Doctor's saying, you fit the MSA portion of this PD disease. After going to the Washington Forum and listing to the Doctor from England.. It made me think,, Who Is Right.. In England, one paticular Doctor who spoke there said to find out about PD, the first thing he does is proform a FDopa PET SCAN, and If that proves positive, than he Does a Glucose PET SCAN to determine if you have MSA as well... Here the Fdopa is not approved. Than you have a Glucose done and they can't read it. WHAT IS WRONG WITH THIS PICTURE !!!!! I want some answers. WHAT IF IT IS SOMETHING ELSE.. Oh, I belive she does have PD, that I personally can live with.. But I need some honest answers. And I can not let Deborah give up hope untill they are answered. Not by Guessing... Which from what I have seen so far is exactly what they are and have been doing.. There are things going on with Deborah that dont FIT.. I read and listen a lot and than compare... Too much doesnt fit.. If any of you out there have any suggestions, Please let me know.. You are welcome to write me off line any time.. Thanks, any and all of your suggestions will be overwhelming welcome.. I just LOVE my Wife and am not ready to say,,, OK...I hope you understand.. "tenacity's man" 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 July 1, 2002 Report Share Posted July 1, 2002 Well said, Bill Dr. Ray -- Re: Deborah's Dilema , There is no cure for PD at this time. They treat the symptoms, not the cause. They are currently working in other countries on a possible cure for PD and have cured mice and monkeys of PD like symptoms through stem cell research. Many of us are hopeful that they will find a cure for PD within years. IF stem cell research provides a cure for PD, I am sure they will try it for MSA also. A diagnoses of MSA is usually the result of doctors ruling out known diseases. MRI's can rule out many diseases as can PET scans, BUT at this point there is no 100% accurate method of defining MSA. If many neurologists have said MSA, why keep spending money on expensive tests which are going to define the problem further - especially when the treatment is the same for ALL of the "alphabet soup" disorders? PD, PSP, CBGD, ALS, MSA, MS, LBD, PAF, etc, are ALL treated by addressing the symptoms, not the disease or disorder. It is time to focus on the real problem. As early as 1981 President Reagan stopped NIH from spending $27 million on Parkinson's research and instead told NIH to put about $30 million into AIDS research. Next year (Oct. 2002- Sept. 2003) Pesident Bush is pushing Congress to identify $1.1 Billion for AIDS research and abatement. HOWEVER, he fought Congress identifying $100 million over 5 years for PD research. To me using MY tax dollars to fight one disease over another should be left to people who understand the problem, not lawyers who know NOTHING of the everyday trials that people with movement or autonomic failure problems face. I am sorry for AIDS patients, but we need research also. Take care, Bill Werre ----------------------------------------------------------------- rsetzer2000 wrote: Well, I just saw Deborah's post and some reply's.. Now it is my turn.. Yes, I need help. My problem is the following. 1- I cannot and will now wait for an autopsy to find that she does not have MSA but Something else that all these Doctors over looked. 2- Yes, I got a PET Scan because from what I understand, it actually tell's if you have parts of your brain disenagranting or not, in stead of the Doctor's saying, you fit the MSA portion of this PD disease. After going to the Washington Forum and listing to the Doctor from England.. It made me think,, Who Is Right.. In England, one paticular Doctor who spoke there said to find out about PD, the first thing he does is proform a FDopa PET SCAN, and If that proves positive, than he Does a Glucose PET SCAN to determine if you have MSA as well... Here the Fdopa is not approved. Than you have a Glucose done and they can't read it. WHAT IS WRONG WITH THIS PICTURE !!!!! I want some answers. WHAT IF IT IS SOMETHING ELSE.. Oh, I belive she does have PD, that I personally can live with.. But I need some honest answers. And I can not let Deborah give up hope untill they are answered. Not by Guessing... Which from what I have seen so far is exactly what they are and have been doing.. There are things going on with Deborah that dont FIT.. I read and listen a lot and than compare... Too much doesnt fit.. If any of you out there have any suggestions, Please let me know.. You are welcome to write me off line any time.. Thanks, any and all of your suggestions will be overwhelming welcome.. I just LOVE my Wife and am not ready to say,,, OK...I hope you understand.. "tenacity's man" 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...
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