Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Hoi(this greeting becomes to be understand by most of the members ;-))Marcel, I agree with you that since it is difficult to find information when you have hardly access to the internet, that collecting information for your father might be a great help. Not so much by finding a cure or coping with symptoms, but by knowing more people cope with this disease. The knowledge more people are suffering with this helps with the feeling of not being alone. At least it helped Anne a lot. Is your father still in the denying stage or has he already accepted he suffers from something? If he wants to talk with someone who feels similar, he might contact Anne when she is home again. Anne is trying to find more people with MSA in Holland who like to have more contact, but until now unsuccesfully. The doctors are not very helpfull with that by passing the requests for contact. If I find some more hidden time, I will send you the links to information we have gathered the last years. Regards, Timo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Hoi(this greeting becomes to be understand by most of the members ;-))Marcel, I agree with you that since it is difficult to find information when you have hardly access to the internet, that collecting information for your father might be a great help. Not so much by finding a cure or coping with symptoms, but by knowing more people cope with this disease. The knowledge more people are suffering with this helps with the feeling of not being alone. At least it helped Anne a lot. Is your father still in the denying stage or has he already accepted he suffers from something? If he wants to talk with someone who feels similar, he might contact Anne when she is home again. Anne is trying to find more people with MSA in Holland who like to have more contact, but until now unsuccesfully. The doctors are not very helpfull with that by passing the requests for contact. If I find some more hidden time, I will send you the links to information we have gathered the last years. Regards, Timo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Hoi Timo & Anne, Denial is perhaps not really the word, though I'll know more after I see him tomorrow. But he still drives his car (only short distances, but that's all it takes, isn't it). He has also mentioned he'd like to know 'how long he has left' but at the same time keeps asking my sister if certain symptoms couldn't be from some other disease. So he is having a hard time with it, as is my mom, although in the back of his mind I think he knows well enough. It helped he had a 20 minute talk with the internist thursday, who was very clear in that he thinks it's MSA and nothing else, and that we shouldn't be looking for cures but looking for ways to make his life more comfortable. That hit home, with my sister as well, who wasn't able to sleep all night. Although she's known, like me, since february, this was the first time she actually heard a doctor say it out loud. Knowing my dad, I think in no time he'll be competing with some of the people here in being stubborn (runs in the family, I'm just as bad, so we have happy times ahead). I don't think he's ready to see other people yet, I'm not even sure he'd welcome it at all, though I very much appreciate the offer and will certainly let you know how he responds. My parents kept to themselves most of their life, they have no friends, just their family visiting occasionally, us and the neighbours...(well my mom has the neighbours, my dad wouldn't mind shooting them). How is Anne? Any progress? As you posted that message about pea/green bean soup, I'd have thought things were improving but then I reread and saw it wasn't really blocked to begin with. And there's the pneumonia and the infections of course. Do they see any change there or have an idea when she should start to improve? I'm keeping my fingers crossed here. Sterkte, Marcel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Hoi Timo & Anne, Denial is perhaps not really the word, though I'll know more after I see him tomorrow. But he still drives his car (only short distances, but that's all it takes, isn't it). He has also mentioned he'd like to know 'how long he has left' but at the same time keeps asking my sister if certain symptoms couldn't be from some other disease. So he is having a hard time with it, as is my mom, although in the back of his mind I think he knows well enough. It helped he had a 20 minute talk with the internist thursday, who was very clear in that he thinks it's MSA and nothing else, and that we shouldn't be looking for cures but looking for ways to make his life more comfortable. That hit home, with my sister as well, who wasn't able to sleep all night. Although she's known, like me, since february, this was the first time she actually heard a doctor say it out loud. Knowing my dad, I think in no time he'll be competing with some of the people here in being stubborn (runs in the family, I'm just as bad, so we have happy times ahead). I don't think he's ready to see other people yet, I'm not even sure he'd welcome it at all, though I very much appreciate the offer and will certainly let you know how he responds. My parents kept to themselves most of their life, they have no friends, just their family visiting occasionally, us and the neighbours...(well my mom has the neighbours, my dad wouldn't mind shooting them). How is Anne? Any progress? As you posted that message about pea/green bean soup, I'd have thought things were improving but then I reread and saw it wasn't really blocked to begin with. And there's the pneumonia and the infections of course. Do they see any change there or have an idea when she should start to improve? I'm keeping my fingers crossed here. Sterkte, Marcel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 Marcel, What a loving and thought-filled gift for your father's birthday. God bless you both. Sandy B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 Marcel, What a loving and thought-filled gift for your father's birthday. God bless you both. Sandy B. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.