Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Hi Lou, Welcome and thanks for your interest in helping others in this group. I'm so sorry for your loss. Were you ever active on one of the PSP discussion forums? Because these " parkinson plus " disorders like PSP, MSA, DLB and CBGD are so similar I sometimes monitor their discussion lists as well. I know it must feel like you've been fighting the wrong disease all this time but I truly believe answers will come soon to help all of these disorders. Your insights will certainly be helpful. There are several other members here whose loved one were diagnosed with PSP while living but confirmed with MSA upon autopsy. We also have some with the opposite story, diagnosed with MSA while living but with one of the other disorders after autopsy. All of these disorders are devastating and rest assured there was nothing you could have done differently for your husband. Regards, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Hi Lou, Welcome and thanks for your interest in helping others in this group. I'm so sorry for your loss. Were you ever active on one of the PSP discussion forums? Because these " parkinson plus " disorders like PSP, MSA, DLB and CBGD are so similar I sometimes monitor their discussion lists as well. I know it must feel like you've been fighting the wrong disease all this time but I truly believe answers will come soon to help all of these disorders. Your insights will certainly be helpful. There are several other members here whose loved one were diagnosed with PSP while living but confirmed with MSA upon autopsy. We also have some with the opposite story, diagnosed with MSA while living but with one of the other disorders after autopsy. All of these disorders are devastating and rest assured there was nothing you could have done differently for your husband. Regards, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Lou, I am one of the MSA patients. In all the reading I have done, it seems that the statement " the final diagnoses will be made during post mortem " '. There are a lot of Parkinson's patients who's diagnoses is changed at the post mortem. I am sorry to hear about your husband's death, but your situation is very common with most of the neurodegenerative ailments. God Bless, Judy & Jim Stark. MSA > Hello everyone, > I am Lou Bartee. My husband was being treated for PSP and then when he passed away 3-5-02 the family donated his brain to the Mayo Clinic for research. When the research papers came to me they informed me he had died of MSA. What a shock. I had only heard of it and knew nothing about it. I hurridly read enough to find out the outcome would have been the same. I am going to sit in and see what you all have to say and see where Jerry fit in with what you have to say. If a question comes up I can answer I will try to help you. Jerry had only been treated 2 1/2 years but we give a lot of thought to things that happened that were unaccountable and he started systoms in 1990 with dizziness. Sorry you all have to go through this but take it one day at a time and caregivers do give yourselves a rest. I nearly killed myself in December by getting to run down. Spent some time in the hospital. No fun. > > You are all in my prayers. > > Lou > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Lou, I am one of the MSA patients. In all the reading I have done, it seems that the statement " the final diagnoses will be made during post mortem " '. There are a lot of Parkinson's patients who's diagnoses is changed at the post mortem. I am sorry to hear about your husband's death, but your situation is very common with most of the neurodegenerative ailments. God Bless, Judy & Jim Stark. MSA > Hello everyone, > I am Lou Bartee. My husband was being treated for PSP and then when he passed away 3-5-02 the family donated his brain to the Mayo Clinic for research. When the research papers came to me they informed me he had died of MSA. What a shock. I had only heard of it and knew nothing about it. I hurridly read enough to find out the outcome would have been the same. I am going to sit in and see what you all have to say and see where Jerry fit in with what you have to say. If a question comes up I can answer I will try to help you. Jerry had only been treated 2 1/2 years but we give a lot of thought to things that happened that were unaccountable and he started systoms in 1990 with dizziness. Sorry you all have to go through this but take it one day at a time and caregivers do give yourselves a rest. I nearly killed myself in December by getting to run down. Spent some time in the hospital. No fun. > > You are all in my prayers. > > Lou > > > Quote Link to comment Share on other sites More sharing options...
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