Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Peggy: Based on our experience with Terry, my wife, and the Dx by her doc, we are dealing with both MSA/SND and Frontal Temporal Dementia. This is based on a recent Spect scan where the frontal lobes were seen to be hypometabolic; i.e. not consuming the normal amount of blood of oxygen from the blood supply. Also, the basal ganglia was seen to be damaged. What is even worse, the MSA and FTD can be antagonistic in terms of types of symptoms. I have been advised this dementia gradually diminishes over time the personality and intellectual capacities of the person. In hindsight, that has been going on for awhile with Terry. I have also seen examples where Terry does things she has been asked not to do and can not tell me why. It appears the executive function is diminished in this type of dementia, which is different from the dementia associated with Alzheimers Disease. Terry is very prone to falling and is dependent on a walker or transport chair. Welcome to our little club. We get all these neat little benefits at no extra charge. Seriously, stay with us and you will learn much from a great group of people about this very miserable set of neuro degenerative processes. Also, hang in there and take care of your self. The toll on the care giver can be worse than the person with the disease process. Message: 11 Date: Wed, 20 Nov 2002 20:20:58 -0000 Subject: MSA/dementia? I haven't posted before, but I have been reading for a couple of weeks. My mother was diagnosed with MSA about a year ago. It took 4 neurologists to finally tell us what was going on. My mother is currently residing in an assisted living and she is in a wheel chair. If she tries getting up on her own she falls every time, but no matter how many times the caregivers and I talk to her, and she promises not to get up, she gets up. She clearly has some dementia, but I don't see that much as a symptom with MSA from previous postings. I'm worried sick about her falling and really hurting herself. When I ask her why she got up, she says she doesn't know. Could the dementia be just an added " benefit " . Regards, Peggy (mom is Polly) Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Dear : Ken's dementia was determined on autopsy to be caused by DLBD, not MSA, but I do remember that our Neurologist told me that the improvement we saw after starting him on Aricept was as much due to the fact that e were keeping his seated BP at 170/100 or above as to the drug. He too became more disoriented when his BP dropped, and I could always have a better conversation with him if he was lying down so his BP would be high. in fact, sometimes I made him lie down if I wanted to talk about something important. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 , The frontal lobe is very much involved in organizing things. I have noticed in myself, a decline in the ability to organize steps to be taken in performing tasks. When I try to start a project, I don't seem to know where to start, even when the goal or objective is crystal clear. I will also add a welcome to Peggy. Sorry you have a need to be here, but welcome. God Bless, Judy & Jim Stark MSA/dementia? > > > I haven't posted before, but I have been reading for a couple of > weeks. My mother was diagnosed with MSA about a year ago. It took 4 > neurologists to finally tell us what was going on. > > > My mother is currently residing in an assisted living and she is in a > wheel chair. If she tries getting up on her own she falls every > time, but no matter how many times the caregivers and I talk to her, > and she promises not to get up, she gets up. She clearly has some > dementia, but I don't see that much as a symptom with MSA from > previous postings. I'm worried sick about her falling and really > hurting herself. When I ask her why she got up, she says she doesn't > know. > > > Could the dementia be just an added " benefit " . > Regards, > Peggy (mom is Polly) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Jim and all: One thing I forgot to mention: There is a version of FTD known as FTDP-17 that is genetic. The P is for Parkinsonianism and the 17 is the specific gene that causes it. There is no feasible genetic test to identify it while one is living. Of course, a pathologic exam of the brain will do it. There is a research test to identify it but it is not reliable in a clinical setting. We have some concern that we may be dealing with this with Terry. Also, her brother died with what was thought to be PSP two years ago. We were not smart enough to have a post mortem done at the time. We live and learn. Terry has agreed to a brain exam after death. Message: 4 Date: Thu, 21 Nov 2002 05:50:31 -0600 Subject: Re: MSA/dementia? , The frontal lobe is very much involved in organizing things. I have noticed in myself, a decline in the ability to organize steps to be taken in performing tasks. When I try to start a project, I don't seem to know where to start, even when the goal or objective is crystal clear. I will also add a welcome to Peggy. Sorry you have a need to be here, but welcome. God Bless, Judy & Jim Stark Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Peggy, Dementia is not usually a symptom of MSA. Many MSA patients are stubborn about things like getting up without help and falling, but that is not really dementia. MSA patients DO often lose short term memory when they get an infection. There are disorders similar to MSA such as PSP, LBD and CBGD which do have dementia as a symptom. In many cases, Aricept has helped them with the dementia. I would always ask the doctor about infection if it (dementia or loss of memory) is acommanpied by movement problems or any other sudden onset of new symptoms. Take care, Bill Werre ============== pjm19502001 wrote: >I haven't posted before, but I have been reading for a couple of >weeks. My mother was diagnosed with MSA about a year ago. It took 4 >neurologists to finally tell us what was going on. > >My mother is currently residing in an assisted living and she is in a >wheel chair. If she tries getting up on her own she falls every >time, but no matter how many times the caregivers and I talk to her, >and she promises not to get up, she gets up. She clearly has some >dementia, but I don't see that much as a symptom with MSA from >previous postings. I'm worried sick about her falling and really >hurting herself. When I ask her why she got up, she says she doesn't >know. > >Could the dementia be just an added " benefit " . >Regards, >Peggy (mom is Polly) > > > > >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 November 21, 2002 Report Share Posted November 21, 2002 Hi , Thanks for your response and I should have been more detailed regarding dementia as opposed to short term memory (which Tom has also). Some examples; he woke yesterday morning saying there was a 12 pound steak that was his and someone threw it on the floor and I needed to pick it up. When I said there was no 12 lb. steak on the floor, he said well it's only 6 lbs. after it's cooked on the grill. He is also very convinced (we've had several days of going over this) that he has $100 worth of Canadian quarters that is in a box in the trunk of his car (that he hasn't driven in over 8 months). He insisted he bought a chocolate milkshake with some of it recently. (He has been bedbound since July). I'm not really sure what the term " dementia " really includes but if any of you can enlighten me/us, I'd really appreciate it. PS. Tom also thinks he has two wives...we both have the name, Sandy, and we look so much alike. One of us is so nice, the other grumpy and mean. For this Thanksgiving, I thank God for my sense of humor. A Thanksgiving prayer: For all that that has been given, we thank you God. For all that has been taken, we thank you God. For all that is left, we thank you God. Love to all, Sandy B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 How insidious and mysterious this MSA !! I don't know if Tom's BP affects his dementia (he has sleep apnia but will not wear " that noisey mask " ). Once he is sitting up he seems clearer than when he is lying down. It's hard to carry on any conversation with him as he just doesn't seem interested (unless of course it's about the Oakland Raiders...he's always been a major fan). Sandy B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 Bill, My mother's neuro has told me that the dementia is a symptom. I know that she isn't trying to be stubborn, because she gets very upset when you ask why she got up. She says I don't know, over and over. My mother and I have always been very close and she is nothing like she was. About 4 years ago she fell (before diagnosis) and broke her leg badly and had to have surgery. They kept her in the hospital for almost 2 weeks and that is when I noticed the change. Even hallucinated somewhat. I don't know what those other disorders you mentioned are (PSP,LBD,etc.) I will ask the Dr. at next visit in January. Thank you for yours and everyone else for replying. It is so hard for me to see my mother like this. I'm an only child and dealing with this alone, as her husband of 25 years divorced her so he wouldn't have to pay for care. Regards,Peggy > > >I haven't posted before, but I have been reading for a couple of > >weeks. My mother was diagnosed with MSA about a year ago. It took 4 > >neurologists to finally tell us what was going on. > > > >My mother is currently residing in an assisted living and she is in a > >wheel chair. If she tries getting up on her own she falls every > >time, but no matter how many times the caregivers and I talk to her, > >and she promises not to get up, she gets up. She clearly has some > >dementia, but I don't see that much as a symptom with MSA from > >previous postings. I'm worried sick about her falling and really > >hurting herself. When I ask her why she got up, she says she doesn't > >know. > > > >Could the dementia be just an added " benefit " . > >Regards, > >Peggy (mom is Polly) > > > > > > > > > >If you do not wish to belong to shydrager, you may > >unsubscribe by sending a blank email to > > > >shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 : this may be a repeat as the first one came back. Check out http://www.parkinson.org/dementiasame.htm I found this to be an excellent description that is consistent with what Terry's neuro is telling us. I got this sometime ago from Dr. Lieberman's daily list of FAQs at this same site; i.e. the " Ask the Doctor digest " . Message: 25 Date: Thu, 21 Nov 2002 22:34:48 EST From: sandybierman@... Subject: Re: MSA/dementia? Hi , Thanks for your response and I should have been more detailed regarding dementia as opposed to short term memory (which Tom has also). Some examples; he woke yesterday morning saying there was a 12 pound steak that was his and someone threw it on the floor and I needed to pick it up. When I said there was no 12 lb. steak on the floor, he said well it's only 6 lbs. after it's cooked on the grill. He is also very convinced (we've had several days of going over this) that he has $100 worth of Canadian quarters that is in a box in the trunk of his car (that he hasn't driven in over 8 months). He insisted he bought a chocolate milkshake with some of it recently. (He has been bedbound since July). I'm not really sure what the term " dementia " really includes but if any of you can enlighten me/us, I'd really appreciate it. PS. Tom also thinks he has two wives...we both have the name, Sandy, and we look so much alike. One of us is so nice, the other grumpy and mean. For this Thanksgiving, I thank God for my sense of humor. A Thanksgiving prayer: For all that that has been given, we thank you God. For all that has been taken, we thank you God. For all that is left, we thank you God. Love to all, Sandy B. Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
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