Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 Kristien, I am so sorry that you lost your mother. I am glad that you found us. My mother Joyce (71) has MSA. My mother was originally diagnosed with PD, too, then rediagnosed by an MDS who saw her walk through his door one month after the last appointment. He said her disease progress was too fast for PD. That, combined with her balance problems and less than hoped for response to the standard PD drugs. He said she had the striatonigral degeneration form of MSA. Other MDSs since then have been reluctant to give her disease a name but they believe it's a PD+ disease because in addition to showing extrapyramidal signs, she shows pyramidal signs, indicating more than PD. Many on this list went to doctors for years before getting the diagnosis. When I speak to my mom's doctors now they are uninterested in giving it a specific name. The treatment, they say, is the same as the PD treatment (at least in her case). My mother's prognosis, however, is different from PD. It has taken only 3 years for her to be bed and wheelchair bound. She is a spirited woman who insists on going to the hairdresser every Friday even now. According to my dad, she even dragged him into the GAP on the way home. I am so thankful for her spirit. You are wonderful to be here to help in your mother's memory. That is a testament to her. Welcome, Debbie Debbie White dwhite@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 Kristien, Welcome to the list. There is nothing more you could do. Treating the symptoms is all any of us can do at this time. As far as the future, you can work to get our politicians to accept the fact that research money needs to be available and that they do not ban important research projects. Take care, Bill and Charlotte Werre from Herndon. VA (Charlotte was diagnosed as Parkinson's in 1990 and MSA in 1995) ======================================================== kristienb@... wrote: > First, I wish to say " hello. " I'm very thankful to have found this > group because I have so many questions about SDS. > > Shy-Drager Syndrome took my mom away less than a month ago. Like many > others with this horrible disease, she was originally diagnosed with > Parkinson's. It wasn't until after she was already gone that we > discovered it was actually Shy-Drager. Strangely, my mom herself had > once suspected that she might have it, but several > doctors/specialists insisted that she didn't. They treated each of > her problems individually. > > Now, as I read about the symptoms of SDS, my heart drops -- they > describe her misery perfectly. And while there isn't anything more we > could have done for her treatmentwise, I wonder if I would have spent > these last years/months differently. I wonder if I could have made a > difference. > > I'm pained with grief now, as my mom's death still came very sudden > and unexpected (at least to her family). How do people cope? What's > next? > > I want to become involved. I want to help others with SDS since I > couldn't help my mom. She would have wanted me to. I live in > California, so I'm throwing this out in the hope of getting info, and > perhaps new friends also going through this with their families. > Perhaps I'll even be able to be of comfort to someone else. > > Thank you. > > Kristien > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 Kristien, I'm so sorry about your mom. My dad is seriously ill right now. But you have come to the right place. We need you. For me, and I know the others too, the help and guidance you can give us is invaluable. I wish you could have found this group earlier. And there are a lot of people in here like you who have lost their loved ones and feel the same way you do - they want to help others fight this horrid demon even though their loved ones' battles have ended. Your mom must have know how much you loved her - and I am sure she knows it even more now, for you to put some of your own pain away and help others. Thank you very much, Donna Waggoner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2000 Report Share Posted October 8, 2000 Hi Kristien: My name is Vera and my husband has the MSA. We also are out here in California. It took us over a year before the doctors found out what Fred had. Some told us that there was nothing wrong with him. To know that you don;t feel good, but they keep telling you that there is nothing wrong. We did fine a doctor that said that it was PD at first. Was sorry and scared to hear that, but also glad to hear that there was something and we just weren't crazy. Then after about 6 months the doctor changed it to MSA. At first we were happy because it wasn't PD, but then we found out about the MSA and knew we had a long road to take. I was feeling lost, but then found this group, which believe me has been a God send, Fred on the other hand will say that his doing ok, but he is really in denial I think. I'm really sorry for your lost, but glad that you have found this group. It really does help to have others on your side. If there is anything that we can help you with , just ask , someone will try to help. This group is like that. Always Vera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2000 Report Share Posted October 8, 2000 Kristien-- I live in visalia calif in usa Im the one alwaays asking for a nuero. with background in movement. l feel like calif has the last drs to find anything only they don't know what they dont know...... becky with msa since1987?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Kristien I'm so sorry for your loss. You must know you did everything for your mom and know that she realised it. It's so hard to lose someone but at last she is out of pain and misery. I think its great that you want to help others and know it will help you in your grief. Where in Calif. do you live? We are in Elk Grove just outside of Sacramento. Take care now, My Mom > First, I wish to say " hello. " I'm very thankful to have found this > group because I have so many questions about SDS. > > Shy-Drager Syndrome took my mom away less than a month ago. Like many > others with this horrible disease, she was originally diagnosed with > Parkinson's. It wasn't until after she was already gone that we > discovered it was actually Shy-Drager. Strangely, my mom herself had > once suspected that she might have it, but several > doctors/specialists insisted that she didn't. They treated each of > her problems individually. > > Now, as I read about the symptoms of SDS, my heart drops -- they > describe her misery perfectly. And while there isn't anything more we > could have done for her treatmentwise, I wonder if I would have spent > these last years/months differently. I wonder if I could have made a > difference. > > I'm pained with grief now, as my mom's death still came very sudden > and unexpected (at least to her family). How do people cope? What's > next? > > I want to become involved. I want to help others with SDS since I > couldn't help my mom. She would have wanted me to. I live in > California, so I'm throwing this out in the hope of getting info, and > perhaps new friends also going through this with their families. > Perhaps I'll even be able to be of comfort to someone else. > > Thank you. > > Kristien > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Thank you, Debbie, for your kind words. My mom was also a very spirited woman, but SDS was extremely hard on her and made her very depressed. While her handwriting was still legible, she wrote about it often -- poetry, journal entries, letters. She left a journal to me that really opened my eyes to what she was going through. At the time my mother passed away, she had just agreed to use a wheelchair (her fainting had gotten too bad), and even had a sense of humor about it. She told us she was going to hang fuzzy dice from her chair and even put a bumper sticker on it. I wish the best for you, your mom and your family. This is an incredibly tough thing to go through. K > Kristien, I am so sorry that you lost your mother. I am glad that you found > us. > > My mother Joyce (71) has MSA. My mother was originally diagnosed with PD, > too, then rediagnosed by an MDS who saw her walk through his door one month > after the last appointment. He said her disease progress was too fast for > PD. That, combined with her balance problems and less than hoped for > response to the standard PD drugs. He said she had the striatonigral > degeneration form of MSA. Other MDSs since then have been reluctant to give > her disease a name but they believe it's a PD+ disease because in addition > to showing extrapyramidal signs, she shows pyramidal signs, indicating more > than PD. > > Many on this list went to doctors for years before getting the diagnosis. > When I speak to my mom's doctors now they are uninterested in giving it a > specific name. The treatment, they say, is the same as the PD treatment (at > least in her case). My mother's prognosis, however, is different from PD. > > It has taken only 3 years for her to be bed and wheelchair bound. She is a > spirited woman who insists on going to the hairdresser every Friday even > now. According to my dad, she even dragged him into the GAP on the way home. > I am so thankful for her spirit. > > You are wonderful to be here to help in your mother's memory. That is a > testament to her. Welcome, Debbie > > Debbie White > > dwhite@n... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 My sisters and I are going to start by educating our mom's doctors on the true nature of her illness: we are going to show them copies of the autopsy report and talk with them in detail. Hopefully, this will help them should they ever come across anyone else with SDS or MSA. Then, we will try to raise money and reach politicians. More light needs to be shed on this. Thanks. K > > > First, I wish to say " hello. " I'm very thankful to have found this > > group because I have so many questions about SDS. > > > > Shy-Drager Syndrome took my mom away less than a month ago. Like many > > others with this horrible disease, she was originally diagnosed with > > Parkinson's. It wasn't until after she was already gone that we > > discovered it was actually Shy-Drager. Strangely, my mom herself had > > once suspected that she might have it, but several > > doctors/specialists insisted that she didn't. They treated each of > > her problems individually. > > > > Now, as I read about the symptoms of SDS, my heart drops -- they > > describe her misery perfectly. And while there isn't anything more we > > could have done for her treatmentwise, I wonder if I would have spent > > these last years/months differently. I wonder if I could have made a > > difference. > > > > I'm pained with grief now, as my mom's death still came very sudden > > and unexpected (at least to her family). How do people cope? What's > > next? > > > > I want to become involved. I want to help others with SDS since I > > couldn't help my mom. She would have wanted me to. I live in > > California, so I'm throwing this out in the hope of getting info, and > > perhaps new friends also going through this with their families. > > Perhaps I'll even be able to be of comfort to someone else. > > > > Thank you. > > > > Kristien > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Hi Donna. I would love to talk with you further and learn more about your father, your situation. Please either post or email me separately and hopefully we can help each other. In the meantime, I'll send thoughts of strength and hope your way. Kristien > Kristien, I'm so sorry about your mom. My dad is seriously ill right now. > But you have come to the right place. We need you. For me, and I know the > others too, the help and guidance you can give us is invaluable. I wish you > could have found this group earlier. And there are a lot of people in here > like you who have lost their loved ones and feel the same way you do - they > want to help others fight this horrid demon even though their loved ones' > battles have ended. Your mom must have know how much you loved her - and I > am sure she knows it even more now, for you to put some of your own pain > away and help others. > > Thank you very much, > Donna Waggoner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Hi Vera: So sorry to hear about your husband's diagnosis. And I completely understand how frustrating it must have been to not know what was wrong. One of my mom's doctors actually used to grimace when he saw her in the waiting room. People thought it was all in her head. She never got a straight answer. Having this knowledge now, you must feel torn. On one side, you both know what you're dealing with. On the other side, you know it isn't an easy road. My thoughts: It's obvious that you love him dearly, so just keep doing what you're doing, and make sure you also keep finding support like this (I WISH I HAD KNOWN TO COME HERE!). My shoulder is always here if you need it. K > > Hi Kristien: > My name is Vera and my husband has the MSA. We also are out > here in California. It took us over a year before the doctors found > out what Fred had. Some told us that there was nothing wrong with > him. To know that you don;t feel good, but they keep telling you that > there is nothing wrong. We did fine a doctor that said that it was PD > at first. Was sorry and scared to hear that, but also glad to hear > that there was something and we just weren't crazy. Then after about > 6 months the doctor changed it to MSA. At first we were happy because > it wasn't PD, but then we found out about the MSA and knew we had a > long road to take. I was feeling lost, but then found this group, > which believe me has been a God send, Fred on the other hand will say > that his doing ok, but he is really in denial I think. > I'm really sorry for your lost, but glad that you have found > this group. It really does help to have others on your side. If there > is anything that we can help you with , just ask , someone will try > to help. This group is like that. > > > Always > Vera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Becky, If I find info on a good neurologist (with MSA experience) in the California area, I will definitely let you know. Unfortunately, my family's experience with California doctors hasn't been very hopeful, but there's got to be someone out there. Hang in there! K > Kristien-- > > I live in visalia calif in usa Im the one alwaays asking for a nuero. > with background in movement. l feel like calif has the last drs to find > anything only they don't know what they dont know...... becky with msa > since1987?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 I'm in the Los Angeles area, and the rest of my family is in San Diego. That's also where my mom lived. If anyone knows of great support groups or organizations in these areas, please let me know. Thank you! K > Kristien > I'm so sorry for your loss. You must know you did everything for your mom > and know that she realised it. It's so hard to lose someone but at last she > is out of pain and misery. > > I think its great that you want to help others and know it will help you in > your grief. Where in Calif. do you live? We are in Elk Grove just outside > of Sacramento. Take care now, > > My Mom > > > > First, I wish to say " hello. " I'm very thankful to have found this > > group because I have so many questions about SDS. > > > > Shy-Drager Syndrome took my mom away less than a month ago. Like many > > others with this horrible disease, she was originally diagnosed with > > Parkinson's. It wasn't until after she was already gone that we > > discovered it was actually Shy-Drager. Strangely, my mom herself had > > once suspected that she might have it, but several > > doctors/specialists insisted that she didn't. They treated each of > > her problems individually. > > > > Now, as I read about the symptoms of SDS, my heart drops -- they > > describe her misery perfectly. And while there isn't anything more we > > could have done for her treatmentwise, I wonder if I would have spent > > these last years/months differently. I wonder if I could have made a > > difference. > > > > I'm pained with grief now, as my mom's death still came very sudden > > and unexpected (at least to her family). How do people cope? What's > > next? > > > > I want to become involved. I want to help others with SDS since I > > couldn't help my mom. She would have wanted me to. I live in > > California, so I'm throwing this out in the hope of getting info, and > > perhaps new friends also going through this with their families. > > Perhaps I'll even be able to be of comfort to someone else. > > > > Thank you. > > > > Kristien > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 You are fairly close to where we live. My Mom and I are both on the list and live in Santa Barbara. It is my father who has MSA. There is another list member who recently relocated to Santa Barbara ( Bushnell). Suzanne Grimmesey-Kirk, MFT Quality Care Management Voice: 884-1647 FAX: 884-1633 >>> kristienb@... 10/09/00 12:02PM >>> I'm in the Los Angeles area, and the rest of my family is in San Diego. That's also where my mom lived. If anyone knows of great support groups or organizations in these areas, please let me know. Thank you! K > Kristien > I'm so sorry for your loss. You must know you did everything for your mom > and know that she realised it. It's so hard to lose someone but at last she > is out of pain and misery. > > I think its great that you want to help others and know it will help you in > your grief. Where in Calif. do you live? We are in Elk Grove just outside > of Sacramento. Take care now, > > My Mom > > > > First, I wish to say " hello. " I'm very thankful to have found this > > group because I have so many questions about SDS. > > > > Shy-Drager Syndrome took my mom away less than a month ago. Like many > > others with this horrible disease, she was originally diagnosed with > > Parkinson's. It wasn't until after she was already gone that we > > discovered it was actually Shy-Drager. Strangely, my mom herself had > > once suspected that she might have it, but several > > doctors/specialists insisted that she didn't. They treated each of > > her problems individually. > > > > Now, as I read about the symptoms of SDS, my heart drops -- they > > describe her misery perfectly. And while there isn't anything more we > > could have done for her treatmentwise, I wonder if I would have spent > > these last years/months differently. I wonder if I could have made a > > difference. > > > > I'm pained with grief now, as my mom's death still came very sudden > > and unexpected (at least to her family). How do people cope? What's > > next? > > > > I want to become involved. I want to help others with SDS since I > > couldn't help my mom. She would have wanted me to. I live in > > California, so I'm throwing this out in the hope of getting info, and > > perhaps new friends also going through this with their families. > > Perhaps I'll even be able to be of comfort to someone else. > > > > Thank you. > > > > Kristien > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 I can't help but feel the deep pain here. Would that all our kids loved us like this. I have never liked to believe that out of BAD comes GOODNESS. But in the last year, I have come to see that when BAD keeps lurking, GOODNESS will show up. There is something very heartwarming in a total stranger's saying, " I just lost my parent in a horribly painful way, but I want to help you with yours. " Donna Re: My Mom My sisters and I are going to start by educating our mom's doctors on the true nature of her illness: we are going to show them copies of the autopsy report and talk with them in detail. Hopefully, this will help them should they ever come across anyone else with SDS or MSA. Then, we will try to raise money and reach politicians. More light needs to be shed on this. Thanks. K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2000 Report Share Posted October 9, 2000 Greetings Kristien! A pretty name. To go along with a very loving spirit. We grieve with you. It is never easy to love a loved one. And a parent can be especially traumatic. But wanting to help others certainly shows the beauty of her spirit that's taken root in your life. We rejoice in this. You mentioned a couple of things I would like to note and comment: > Strangely, my mom herself had once suspected > that she might have it, but several doctors > /specialists insisted that she didn't. Often with some of these chronic neurological problems, the patient spends the time doing research ... more so than the specialists. They often present the possible diagnosis long before many specialists are willing to provide one. Doesn't mean they are right ... that's the catch. But they often can be right about their ailments. Probably a result of 'vested interest'! > They [her doctors] treated each of her problems individually. Very, very few doctors actually listen to the whole person ... body, mind and spirit. And with some diseases it's important to listen to the whole person, to really know what's going on with that patient. > And while there isn't anything more we > could have done for her treatmentwise, > I wonder if I would have spent these last > years/months differently. I wonder if I > could have made a difference. It does you credit to want to have made her experience even better. But please also know that your very desire to have made it better means that you did a good job. You and your mother were on a very special Journey. With this disease it's never easy. But you did travel the road with her, while you could. Her Journey continues for a time without you. But you will walk with her again. > I'm pained with grief now, as my mom's death > still came very sudden and unexpected (at least > to her family). How do people cope? What's next? There are several stages of grief. But the most important advice you can take is to go find someone that will listen. Just listen. You need to talk with a trusted friend, a pastor, etc. Find someone that can listen as you struggle with your situation. Expressing your feelings here is certainly one way to do that. You will find this a very supportive bunch of folks. I constantly stand in amazement how much everyone gives to the group. It's astounding. And finally, Kristien, take time to grieve. Wanting to help is a very noble expression of your grief. But you need to take time for yourself and the rest of your family. Then dive into it. Yes, the help is welcome and certainly needed. I'm certain others will guide you in that direction. My intent is to just let you know we care. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 mary -- do you know any of the drs atthe parkinson clinic>??? nnear san jose ,.............................................. bt............... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Dear donna, i assume you just had a loss and if you did not i think you can relate. My mom has been sick for quite a while now and she is on a respirator. She is in bad shape and she does not really respond and barely opens her eyes. It is heartbreaking to see her like that. My father said that there is nothing he can do? She is running fevers and on and off antbiotics. Help-i need someone to talk to. Anyone that is in this situation please respond. ann, heartbroken in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 please tell me what happened to your mom. mine is verey very ill on a respirator now and i don't know what to do. please reply. thanks ann from ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Ann, Further, be near her, hold her hand, tell her you love her. Barb (in Va) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Ann, Is your mom in the hospital? If so, that is all you can do except let her know you are there by talking to her and holding her hand when you are there. God is working through the doctors at this point. Take care of yourself also, Bill and Charlotte -------------------------------------------------------------------------------- a1978@... wrote: > please tell me what happened to your mom. mine is verey very ill on a > respirator now and i don't know what to do. please reply. thanks > ann from ny > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 , No I don't know any of the drs. at the parkinson clinic. Sorry, Re: My Mom > mary -- > do you know any of the drs atthe parkinson clinic>??? nnear san jose > ,.............................................. bt............... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Dear Ann Terribly sorry to hear of your Mom's illness. Our thoughts and prayers are with you and her. Re: Re: My Mom > please tell me what happened to your mom. mine is verey very ill on a > respirator now and i don't know what to do. please reply. thanks > ann from ny > > Quote Link to comment Share on other sites More sharing options...
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