Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Shirley, Thank you so much for the input about the doctors. That was really helpful. Please let me know how your mom does with a walker. We have talked about it but I am concerned that because he twists when he falls he could get tangled up in it and break something. Guess the doctor agreed because he didn't mention it - only the wheel chair. Thanks again, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 In a message dated 4/12/02 1:05:17 PM Central Daylight Time, MaiLiis@... writes: > Sorry, Cheryl....don't know what's wrong with me....read your account and > wanted to go through a pie in his face! I will reread your post later. > No apologies needed! Guess I'm just testing the waters to see if someone could tell me I was wrong for feeling the same way! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 In a message dated 4/12/02 2:23:42 PM Central Daylight Time, clbrown@... writes: > I don't mind that he saw the patient for only 5 minutes, but I WOULD mind > that he made such a radical diagnosis consulting only one assistant. Why > in the world wouldn't he consult Bob's former doctor too? It only makes > sense to me when your instinct is to contradict another physician's > diagnosis to find out more about why the first diagnosis was made. My thinking, too, Christie. As for the Aricept, I confused you. It's more like he thinks the Aricept is working " too " well. From what I know of it, it works better for LBD than for AD, for which it was developed. I don't think he knows nearly as much about this disease as he wants me to believe, and I'm not inclined to bite. You also wrote, " I know you want to like this guy but if Bob's physician disagrees with the primary diagnosis you will have a helluva hard time later on getting appropriate assistance in terms of nursing, etc. " This is a very scary thought!! Thanks for your input, Christie. I appreciate it! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 WOW Cheryl, So much to take in. I am just going to answer one question. In my mom's case her primary care doctor is responsible for pain medication, and regular meds. As far as the Signmet,Risperdone and or any other lewy body medications (I guess used to treat the parkinson like symptoms) her neurologist is in charge of that. Her primary care doctor would also be in charge of anti-depressents. The wheel chair has been prescribed by the neuroligist as well. And Physical Therapy also is prescribed by the Neuroligist. The Physical Therapist however is the one who prescribed the walker with the Neuroligist approval which by the way hasn't came in yet and was ordered 3 weeks ago. From what I see as far as the lewy body only the neuroligist is in charge and would be for all other neurological problems as well. Perhaps you can talk to your old doctor and see what he thinks about the new diagnosis. Shirley >From: LewyLady@... >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Greased Fingers (long) >Date: Fri, 12 Apr 2002 12:13:15 EDT > >Oh, the rollercoastering! Three days ago I asked you to cross your fingers >because I was SO excited about finding a geriatrician who handles some LBD >cases. We had our first appt with him yesterday, and my fingers feel too >slippery to stay crossed. For starters, we were in his suite for 4.5 hrs >and >saw him for not much more than 5 minutes. Next visit should not be the >same. > >The intake assessment was two hours of interview and neurological assmt >done >by a student PA. She was sharp and had heard of LBD. When she finished >she >met with the MD, his PA, a social worker, and ?. When they finished the >doctor came to the exam room and met my husband and me for the first time. >And the first thing he told me was that, " with all due respect to Dr (wrong >name), " he disagrees with the LBD diagnosis. His reasons: >1) Bob has been doing too well for too long. His MMSE remains at 23, where >it has held for well over two years. I can see symptoms going back 9 yrs. >He continues to do remarkably well on Aricept. >2) If this is LBD he wouldn't have done so well w/the Sinemet, either. >LBD >pts don't benefit from it, he said. >3) If we REALLY want to continue Vit E w/the Aricept we can, but there is >no >evidence that it is helpful. >4) Every comment/question I had was met with an attitude that I don't know >much about this disease and " the research bears out . . . " > >-First, Hart, the Cognitive Neurologist who diagnosed Bob 4+ yrs ago, >IS a researcher. He was recruited away from s Hopkins to U of AK where >he is setting up the research project in a new memory disorders clinic. I >think that qualifies him as being on top of research. Also, the dementias >and memory disorders are his areas of special interest. >-Second, Bob is a classic LBD case per Hart and from most of what I read. >-Third, he does so well on Sinemet because Hart has tweaked and tweaked and >tweaked, including a 2.5 month period during which we were in touch >telephonically each 7-10 days until he was satisfied. He once told me >there >are three neurotransmitter systems that have to be dealt with to get the >Sinemet to work and many doctors don't want to be bothered with the work >entailed. >-Fourth, I have read abstracts indicating that Vit E DOES enhance the >benefits of Aricept and that the life course of LBD isn't necessarily as >fast >as once believed. >-Fifth, he made his assessment based solely on input from his student PA, >having never met patient or caregiver or seeing diagnostic records. > >He thinks it is PD w/dementia, BUT, he is going to talk to " the only >neurologist in town who knows the mental disorders of the elderly . . . " > >What I DID like: >1) He asked Bob if he wanted to stay at home, and when he responded >affirmatively told him that if he is going to take care of him he (doc) has >to take care of me, too. (recognizing caregiver stress) >2) He gave me an rx for Remeron (Mertazipine). But first he said he >didn't >like to do this because it often exaccerbates dementia and can contribute >to >falls. (I went in asking for sleep assistance from either Mertazipine or >Seroquel. Or whatever else could work.) >3) When push comes to shove they focus on quality of life vs quantity, >which >appeals to both Bob and me. >4) He ordered a wheelchair and a physical therapist to come to the house. >5) He is a minimalist with medications. > >Our homework prior to FU appt in one month is to accumulate the rest of >Bob's >records and decide on our goals with quality of life issues, to be >discussed >with the doctor at that time so a plan can be set. > >How did Bob respond to all this? (This one's for YOU, Mai-Liis . . .;-) ) >He liked the doctor (I didn't " dislike " him) and likes the idea of changing >the diagnosis so he won't have to feel that what he has is what he will >always have and he can get better. > >MIK, I'm not making any recommendations for or against yet. Am working >hard >to maintain perspective. Will keep you posted. > >Once home at 5PM there was an early morning message from Dr. Hart >apologizing >for not returning my call sooner, that he had been working on how to get >several of his old patients into his new clinic (where he wasn't supposed >to >see patients). So have postponed making an appt with the neurologist >mentioned several paragraphs back. > >Someone set me straight if need be, but my concern is that this doctor will >in fact decide to treat for something other than LBD and we will have >disastrous results. I think the primary care doc is supposed to be in >charge, but in THIS case the neurologist will be in charge. He knows the >patient, he knows the disease, and he has cared superbly for my husband for >over 4 yrs. I do not presume to be a medical professional, but like so >many >of you, have been doing my homework and don't feel at all ignorant of this >disease. I will just have to stand my ground . . . until / unless he >presents real evidence to the contrary. > >Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 FIVE minutes? He gave you FIVE minutes after relying only on his student PA?! Cheryl, I marvel and admire your patience and at your ability to allow plenty of time to evaluate your experience. This reminds me too much of my last experience with Jack's neuro....who quoted research studies to state that this, that etc. couldn't be so....without having the least bit of interest in finding out what I had learned by being Jack's caregiver as well as hearing of all the personal accounts of everyone on this list! But, I have an issue with doctors who speak in absolutes......and especially when the subject is LBD about which they know so little! Sorry, Cheryl....don't know what's wrong with me....read your account and wanted to go through a pie in his face! I will reread your post later. Mai-Liis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Wow, Cheryl-- I can really appreciate the rollercoaster you must be on. But my gut reaction is that any doctor that claims he knows what Lewy Body definitely is and isn't hasn't seen very much of it. We all know that there is day-to-day variability with each of our LOs, and there is a lot of variability BETWEEN patients too. Actually there is a lot of good medical evidence that rates of decline vary a lot. I don't mind that he saw the patient for only 5 minutes, but I WOULD mind that he made such a radical diagnosis consulting only one assistant. Why in the world wouldn't he consult Bob's former doctor too? It only makes sense to me when your instinct is to contradict another physician's diagnosis to find out more about why the first diagnosis was made. And anyone that says the Aricept isn't helping is demonstrating a big error in judgment....the real test of whether it is working is NOT whether the patient is doing " normally " but whether the patient is doing BETTER THAN HE OTHERWISE WOULD BE WITHOUT THE MEDICATION. It strikes me as contradictory that this doc could say on the one hand that Bob is doing so well on the MMSE that it couldn't be LBD and at the same time believe the Aricept is not helping him cognitively. I know you want to like this guy but if Bob's physician disagrees with the primary diagnosis you will have a helluva hard time later on getting appropriate assistance in terms of nursing, etc. Sorry, probably NOT what you wanted to hear...if Bob likes him, maybe you can live with the arrogance. Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 she hasn't gotten the walker yet but the physical therapist said to put weights on it to weigh it down so she doesn't fall. >From: LewyLady@... >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Re: Greased Fingers (long) >Date: Fri, 12 Apr 2002 13:44:36 EDT > >Shirley, >Thank you so much for the input about the doctors. That was really >helpful. > >Please let me know how your mom does with a walker. We have talked about >it >but I am concerned that because he twists when he falls he could get >tangled >up in it and break something. Guess the doctor agreed because he didn't >mention it - only the wheel chair. > >Thanks again, >Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 In a message dated 2002-04-12 12:22:26 PM Eastern Daylight Time, LewyLady@... writes: > Someone set me straight if need be Cheryl, Go with your gut feelings. I once invited 3 doctors to discuss their varied diagnosis, together.....it never happened. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 In a message dated 4/12/02 10:07:49 PM Central Daylight Time, buev@... writes: > Go with your gut feelings. I once invited 3 doctors to discuss their varied > diagnosis, together.....it never happened. Do you think ego had anything to do with it? Thanks, Ev! ;-) Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Cheryl, now that I am over wanting to throw a pie at your geriatrician, I am curious whether you did get a prescription for Remeron already and whether Bob starts on this immediately. Also, can you tell me why Remeron was chosen rather than Seroquel which works on both sleep and hallucinations? Isn't it amazing how long it took Dr. Hart at s Hopkins to diagnose Bob as LBD, and how quickly the geriatrician rediagnosed him? Oh....also curious.....is Capgrass considered " some " dementia? Grrrrrrrrrrrrrrrr.......back to pie throwing. Mai-Liis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Cheryl So sorry to hear the geriatrician appt. didn't go as well as planned. This must have been extremely frustrating to have spent half a day to see a dr. for what seemed like half a minute. I appreciate you keeping an open mind on not completely judging him.........yet. I do agree that you, as the caregiver, really do know a lot about this disease and what has worked this far. Keep your guns loaded and stand up for the knowledge you have. Best of luck. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 In a message dated 2002-04-13 1:13:12 AM Eastern Daylight Time, LewyLady@... writes: > Do you think ego had anything to do with it? > > As we both well know, ego had EVERYTHING to do with it. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 In a message dated 2002-04-14 9:32:58 AM Eastern Daylight Time, imelda4@... writes: > The last stuff I have read is that if the > Parkinson is the strongest symptom at first than its Parkinson with LBD or > with Dementia and if the dementia symtoms come first than its LBD sorry to mix things up even more...BUT, in our case for 3 years we lived with Parkinson's...then changed to LBD with Parkinsonism...3 neurologists + 1 gerintologist agree. One more example of how different the patients and the medical people are. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Cheryl, all this is so confusing. Perhaps you could look back at how Bob started to show symptoms. The last stuff I have read is that if the Parkinson is the strongest symptom at first than its Parkinson with LBD or with Dementia and if the dementia symtoms come first than its LBD. But things are always changing and frankly I hate doctors that sound too confident...do they really know something or are they just buying into the lastest theory? Yes, doctors do that. Who is this expert neurologist he is going to talk to? Maybe you should be talking to him. And like someone else said, the Parkinson, LBD and Alzheimer's are all meshed together and I don't think the research is far advanced enough to separate it out yet into discreet paths of treatment. As you said, haven't we all read that Aricept works better with LBD. And is Bob being judged for doing well when no one really knows the course of treatment or how your interventions have affected him? As for the Vitamins. I'd say a good 75% of Doctors love to put down vitamins. For an alternative view, my husband's neurologist recommended 800 units of Vit E and all the Co-Enzyme Q-10 we could afford to buy. We both liked that: it put some of the treatment into our hands. Just my opinion but I believe an arrogant doctor is ultimately a dangerous doctor. Maybe you could test him...it could just have been his bedside manner. Why not bring some articles about LBD, like the one about Aricept doing better etc...either to show him or query him with. How would he respond? And yes, consultations between two treating doctors is not an option but an absolute necessity. Will he do it? Sorry if I sound a little hard on him....it's just so scary. And the fact that Bob likes the alternative diagnosis only complicates it all. I'm sure my husband would glom onto the possibility of not having dementia. Last year we had an opposite experience when we tried to participate in the Predictors' Study at Columbia -Presbyterian. That doctor was so arrogant that he completely turned my husband off. And just recently we got a summary of the testing that was done there. Even in writing he was condescending, ( " patient takes Aricept and some vitamins " ). GRRRR. Imelda To learn more about Lewy Body Disase, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 In my mom's case first they said it was a pinched nerve in her neck, then spine problems. Somewhere in there she started slowing down a lot.Then they started treating her for " Parkinson like " symptoms. Then the hallucinations. Then hardly being able to move at all, can't dress herself and no bladder control and from what I hear now sometimes no bowel control. Very agitated, no patience. BUT she speaks and remembers VERY NORMAL where as if you were on the phone with her you would not know anything was wrong. Sometimes she is confused but it seems that is due to lack of sleep, and or not taking medications properly or at all. >From: buev@... >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Re: Greased Fingers (long) >Date: Sun, 14 Apr 2002 10:31:02 EDT > >In a message dated 2002-04-14 9:32:58 AM Eastern Daylight Time, >imelda4@... writes: > > > > The last stuff I have read is that if the > > Parkinson is the strongest symptom at first than its Parkinson with LBD >or > > with Dementia and if the dementia symtoms come first than its LBD > >sorry to mix things up even more...BUT, in our case for 3 years we lived >with >Parkinson's...then changed to LBD with Parkinsonism...3 neurologists + 1 >gerintologist agree. >One more example of how different the patients and the medical people are. >Ev > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Hi, Imelda. Thanks for your reply. Bob showed simultaneous onset of physical and cognitive issues, which is apparently not very common. I agree that all these diseases overlap. Someday we may find that they are related along a continuum with little offshoots here and there. Am convinced we're in the very early stages of understanding this stuff. The neurologist the geriatrician wants to talk to is the one I was going to schedule with when we got home, but there was that call from the previous neurologist, who is the one I would prefer. I'm afraid I wouldn't be cooperative if the gerontologist tried to change the neuro drugs WITHOUT consultation, including the patient being examined by a neurologist knowledgeable about this disease. It is just too dangerous, in my opinion. Thank you for the compliment as yes, I do think my care has helped Bob do as well as he has. (I sure hate to think all this has been for naught! ;-) ) But in time he has to fade/is fading. I often wonder how we determine if the meds have lost their effectiveness or if it is simply disease progression. Like you, I've been thinking about printing out some articles to show him, too, for the same reasons you mentioned. And consultation with another doctor is indeed a must! I remember you dropping out of the Predictor's Study because of your husband's response to the doctor. Arrogance doesn't go far here, either. This guy was pleasant enough, but the idea that he wanted to change the diagnosis before ever even meeting my husband scares the wee out of me! How is your husband doing these days? And you? Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 In a message dated 4/14/02 10:13:55 AM Central Daylight Time, shirley0914@... writes: > if you were on the phone with her you would not know anything was wrong. > Sometimes she is confused but it seems that is due to lack of Bob can still sound good on the phone. Insufficient sleep sure adds to his confusion! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Hi Cheryl...You are in an agonizing predicament. First of all I am so dispointed that the big " visit " was less than satifying. I think we were all on the edge of our seats waiting for news. You are absolutely right about being wary of this new doc. Our grand " PUBA " neurologist at UCSF (Head of the dept., hundreds of books to his credit, etc.) knew nothing about LBD. We had a nightmare experience with drugs. I would remain with Dr. Hart if at all possible. Could you do phone conferences? Stand your ground. you sound extremely knowledgeable. Bobbie > From: LewyLady@... > Reply-To: LBDcaregivers > Date: Fri, 12 Apr 2002 12:13:15 EDT > To: LBDcaregivers > Subject: Greased Fingers (long) > > Oh, the rollercoastering! Three days ago I asked you to cross your fingers > because I was SO excited about finding a geriatrician who handles some LBD > cases. We had our first appt with him yesterday, and my fingers feel too > slippery to stay crossed. For starters, we were in his suite for 4.5 hrs and > saw him for not much more than 5 minutes. Next visit should not be the same. > > The intake assessment was two hours of interview and neurological assmt done > by a student PA. She was sharp and had heard of LBD. When she finished she > met with the MD, his PA, a social worker, and ?. When they finished the > doctor came to the exam room and met my husband and me for the first time. > And the first thing he told me was that, " with all due respect to Dr (wrong > name), " he disagrees with the LBD diagnosis. His reasons: > 1) Bob has been doing too well for too long. His MMSE remains at 23, where > it has held for well over two years. I can see symptoms going back 9 yrs. > He continues to do remarkably well on Aricept. > 2) If this is LBD he wouldn't have done so well w/the Sinemet, either. LBD > pts don't benefit from it, he said. > 3) If we REALLY want to continue Vit E w/the Aricept we can, but there is no > evidence that it is helpful. > 4) Every comment/question I had was met with an attitude that I don't know > much about this disease and " the research bears out . . . " > > -First, Hart, the Cognitive Neurologist who diagnosed Bob 4+ yrs ago, > IS a researcher. He was recruited away from s Hopkins to U of AK where > he is setting up the research project in a new memory disorders clinic. I > think that qualifies him as being on top of research. Also, the dementias > and memory disorders are his areas of special interest. > -Second, Bob is a classic LBD case per Hart and from most of what I read. > -Third, he does so well on Sinemet because Hart has tweaked and tweaked and > tweaked, including a 2.5 month period during which we were in touch > telephonically each 7-10 days until he was satisfied. He once told me there > are three neurotransmitter systems that have to be dealt with to get the > Sinemet to work and many doctors don't want to be bothered with the work > entailed. > -Fourth, I have read abstracts indicating that Vit E DOES enhance the > benefits of Aricept and that the life course of LBD isn't necessarily as fast > as once believed. > -Fifth, he made his assessment based solely on input from his student PA, > having never met patient or caregiver or seeing diagnostic records. > > He thinks it is PD w/dementia, BUT, he is going to talk to " the only > neurologist in town who knows the mental disorders of the elderly . . . " > > What I DID like: > 1) He asked Bob if he wanted to stay at home, and when he responded > affirmatively told him that if he is going to take care of him he (doc) has > to take care of me, too. (recognizing caregiver stress) > 2) He gave me an rx for Remeron (Mertazipine). But first he said he didn't > like to do this because it often exaccerbates dementia and can contribute to > falls. (I went in asking for sleep assistance from either Mertazipine or > Seroquel. Or whatever else could work.) > 3) When push comes to shove they focus on quality of life vs quantity, which > appeals to both Bob and me. > 4) He ordered a wheelchair and a physical therapist to come to the house. > 5) He is a minimalist with medications. > > Our homework prior to FU appt in one month is to accumulate the rest of Bob's > records and decide on our goals with quality of life issues, to be discussed > with the doctor at that time so a plan can be set. > > How did Bob respond to all this? (This one's for YOU, Mai-Liis . . .;-) ) > He liked the doctor (I didn't " dislike " him) and likes the idea of changing > the diagnosis so he won't have to feel that what he has is what he will > always have and he can get better. > > MIK, I'm not making any recommendations for or against yet. Am working hard > to maintain perspective. Will keep you posted. > > Once home at 5PM there was an early morning message from Dr. Hart apologizing > for not returning my call sooner, that he had been working on how to get > several of his old patients into his new clinic (where he wasn't supposed to > see patients). So have postponed making an appt with the neurologist > mentioned several paragraphs back. > > Someone set me straight if need be, but my concern is that this doctor will > in fact decide to treat for something other than LBD and we will have > disastrous results. I think the primary care doc is supposed to be in > charge, but in THIS case the neurologist will be in charge. He knows the > patient, he knows the disease, and he has cared superbly for my husband for > over 4 yrs. I do not presume to be a medical professional, but like so many > of you, have been doing my homework and don't feel at all ignorant of this > disease. I will just have to stand my ground . . . until / unless he > presents real evidence to the contrary. > > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Imelda and Cheryl My dad wasn't given a diagnosis in the very beginning. Our neurologist would speculate, but say he didn't have a diagnosis at yet. Then, with process of elimination, and much testing, the dr. said " Diffuse Lewy Body " . The neuro. said this disease takes on characteristics of Alzheimers and Parkinsons. Made it sound like it was it's own disease which was a little comforting to know he wasn't going to fall under just the Alzheimers sector or just the Parkinsons sector. For the most part, the whole diagnosis and disease has been a nightmare. Good luck all and God bless! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 In a message dated 4/14/02 7:24:25 PM Central Daylight Time, randalls@... writes: > I would remain with Dr. Hart if at all possible. Could you do phone > conferences? I sure hope so!! He was wonderful about phone and FAX messaging while he had Bob in his care. Am in contact with the Director of the local VA Hospital, who is getting me direct contact phone numbers up in Little Rock so I can hopefully get Bob in fairly soon and he could be overseen by Hart. The VA is so backlogged down here that enrollment is taking 1/2 yr or more, as are respite vacancies. It will be another week or so before Dr. Hart will know what he can do about getting Bob into his clinic. Fingers, toes, ankles - you name it - are crossed with high hopes. (Don't you think I should know better by now! ;-) ) Glad to see you had such an enjoyable family visit. I know what you mean about Dick being shot for a couple of days afterward. It's the same here. Thanks, Bobbie. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 How is your husband doing these days? And you? > Cheryl Cheryl: In the usual LBD way, if you had asked me two days ago how my husband was doing, I would have said terrific: He has been very focused and thinking about stuff and aware. Of course he can't DO anything but, heh, I'll take his talking about doing. But yesterday he declined (again). Said he was very confused and depressed about his condition. This morning he told me he has Parkinson's disease not LBD...his own diagnosis and wishful thinking I'm afraid. Part of his doing well I think was that we both recently went through the death of my dog. During that time I was giving her 3 medications a day, IV fluids twice a day and injections every 3 days. My husband has really tried to be supportive of me, even though he definately has never been a dog person. While it was horribly sad when she died I now find myself feeling so incredibly Free...with loads of time. Whereas before she got sick I thought I was overwhelmed then. Besides being the caretaker, and working 3 days a week, and seeing my mother who is 88 and quite the dominatrix, I've been getting ready for an art show in May. I've been painting away and that has been fun since my style totally changed after my husband was diagnosed and this will be the first time I'm showing this new stuff. While most people go from realism to abstract, I went the other way. I was painting very elaborate and time consuming abstract watercolors and now have switched to realistic acrylic paintings on canvas.They were inspired by my longing to take a vaction and knowing I wouldn't be going back to Spain for a long long time. So I began painting these doorways, full size with a landscape seen through it. And now I'm painting other stuff from my Spanish sojourns. So that has been a saving grace for me. I even (gasp) called in sick today from work to get ready for the show. So I guess I'm not so different from my husband. One day I'm down and then another I'm up. Also met an artist who does websites so I'm hoping after the show is over she will help me get the website organized. Stay tuned..Imelda To learn more about Lewy Body Disase, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hey, Imelda, thank you for your interesting post! How great that your art is continuing forward. I seem to recall a big change for you last summer/early fall after 11 September. Or was it the withdrawal that it brought on? At any rate, I am delighted that you have this wonderful outlet and way to look at life through new eyes. I am sorry, though, that you lost your dog, but glad that your husband was able to be a support for you. Even as sick as they are it is wonderful that they can rally for us at times. I hurt for him and his awareness of his condition. Bob is having more and more down times as he faces front on that this is the way it is going to be. Today I have encouraged him that maybe when the Mirtazipine kicks in so he can sleep and the Physical Therapist (who starts tomorrow) works with him, his quality of life will improve. I hope even moreso for him than for me. It has to be the pits to live with this as the patient, too. Wishing I could attend your art show, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Imelda Wow, your artistry and style sounds so wonderful. I am so glad you have a place to escape to. Good luck with the upcoming art show and by the sounds of it, I am sure you will do well. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Imelda, I so enjoyed your long post! I can feel your excitement when reading your description of your upcoming show! Wow! At first I thought 'How strange' thinking about going from abstract to realism.....but then I thought that all of us live such an abstract....surreal, really....life with LBD, realism would be most welcome. To me, looking at a landscape through a doorway spells LONGING. When you get your website set up, will we be able to see your paintings? That would be wonderful! Mai-Liis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Wow Imelda!!! That sounds great. Can hardly wait to see your paintings. Donna A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com Quote Link to comment Share on other sites More sharing options...
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