We went to the neurologist today for routine visit. DH has been having trouble walking and he has been in physical therapy twice weekly since 12-4-2007. I had a lot of questions for neurologist today. She said my DH alzheimer's is not a "classical case" She added that he has parkinsonian type symptoms (tremors) and then she said he had lewy body symptoms as well. I was not very well educated on lewy body, so I came home and looked up stuff on internet. It does not sound good. Is anyone out there in cyber space dealing with AD AND lewy body dementia? The doc did not change his meds, suggested we continue with physical therapy as long as he continued to make progress. In my opinion, the only progress he is making in physical therapy is that he is getting exercise, which is good but the time will soon come, I'm afraid when the physical therapist will dismiss him and say they have done all they can do.
Jayne..I feel your pain..I believe also that my husband suffers from Lewy Body Dementia. Parkinsons runs in his family and his sister who is 2 years older (65) has Lewy Body Dementia. It surely is a devastating condition that many do not recognize. I have watched my sister in law go down from being a school teacher to getting confused and wrecking her car to retirement 3 years ago and now sitting staring in space..not able to play piano or sign her name. She cannot button things or put her clothes on...she is soon to be in a rest home I am sure. There is little emotional being with her anymore..she mostly sits and sleeps and sometimes will cry..but nothing gets her attention. She cannot even get something to eat..she has to be attended to in all functions. Her gait is so bad that she merely shuffles very slowly..and when she needs to sit she acts like she is afraid and shuffles around and around the seat and has to be literally let down to the chair. The most noticeable feature that I have been noticing is that their hands dont work anymore..they get very feeble with their hands..handwriting becomes literally unreadable...even by those affected...my husband does this..writes notes and then cant read them later..they struggle to eat with utensils and the sister in law eats with her hands most of the time...it is a pitiful sight. I believe that the PD and LBD have less favorable life span and are more debilitating than just ordinary AD. My husband has the PD and I do believe he has the LBD also like his sister..he is really forgetting things...was always good with remembering names and phone numbers and all that is going away..his hands dont work right..he hasnt been able to button his shrits for several months. His shuffling has moved to both feet and I hear him at night on the hard floors. He is getting so slow doing things..takes foreever to get ready to go somewhere. His sister is put in the shower and she just stands there..these two conditions will absolutely take our partners away from us in a most horrible way. Mind you..these people are in their early 60s and this has been coming on for several years...My husband also has the night terrors which is typical of LBD...and his sense of smell has been gone for years. These are things we dont learn until after the symptoms begin. He also craves sweets but his appetite is small these days. That awful gaze in their eyes drives me mad...like they are looking thru us. Do you know what I mean..and sit around with mouths open...and the senses dont work well..something can be right there and they don't see it. The doctor explained to me that it' slike the wiring from the eye/ears to the brain..breaks down and has shorts in it and sometimes it doesn't work.
I am sorry for you but know you are not alone...we have some bad days!
I really apprecited your comments. Everything you said is so like my husband....the shuffling...the hands not wanting to work right....the stare...everything. But today has been a better day for me and I have learned to take a day at a time.
My DH was diagnosed in 2004 with dementia at age 55. He got very bad very fast. Had to have sitters so I could work, I was only 49. He could be violent so doc said find a nursing home. We had a son still in high school. The neurologist who determined it was LBD and his psychiatrist worked with his meds. After starting on an ALzheimers med he actually improved. He can stay by himself and even drive locally. He even raised a garden last summer. When he was diagnosed some of the info said 7 years life expectancy after diagnosis but he actually regained some of his cognitive abilities and his movements have improved. He still has memory , reasoning deficits, trouble locating things around the house visually, and night terrors/disturbances. Our original neurologist moved out of state and the next one blamed every problem on the LBD. He started having migraines, doc blamed it on LBD did not offer to try to help. We found a new neurologist, after appropriate treatment , migraines are gone. Unfortunately I've already experienced some of what the future holds (changing diapers, helping him in & out of bed, feeding him) but aggressive medical treatment has improved his functioning now for a couple of years. It was a battle to get him to cooperate with the doctor appointments and treatments but the pay back was an improved quality of life. W e take a day at a time.
My husband was initially diagnosed w/ MCI in '04. Rediagnosed w/ Alzheimer's in '06 but the neurologist began to suspect LBD. He certainly fits the LBD profile more than the AD profile. The Parkinsonian shuffling, hallucination, delusions, night sweats, etc. His decline has also been more rapid than that of AD. I would say he's already in the mid-late stage and it's been less than 4 years! I just feel like I'm struggling to keep up w/ the new changes that LBD keeps throwing @ us!
Right now, the most frustrating thing about LBD is that he's being shut out of all the promising AD vaccine trials because he has the "wrong" disease! While I understand where the drug co's are coming from, he's been on AD drugs for years now and they've helped, so what's the diff? Anyway, I'm fantasizing about buying these meds on the black market somewhere! ;)
SKNight-- Interesting, my husband lost his smell years before he was diagnosed w/ MCI too. Docs thought he had sinusitus, he even had an operation for it. I read somewhere that the loss of sense of smell is one of the 1st indicators of possible dementia. Has anyone else heard that?
Jen V : I have read in research that loss or reduced sense of smell can be an indicator of dementia. I have Parkinson's and my sense of smell is reduced , it can be a symptom of Parkinson's also . Might be connected to any neurological disease.
My husband was diagnosed with MCI 6/03 and then Alzheimer's 12/03. He has been in research studies at OHSU in Portland, OR where they diagnosed what I thought was Benign Essential Tremor as Parkinson's when we were there last August. Because of that I was also told there is a slight possibility it is Lewy Bodies rather than AD. We live fulltime in our motorhome (no, he doesn't drive) and met a fellow who had Parkinson's so badly and was shaking so much internally that he lost much weight from that. Everyone who knows him told us how he responded to a treatment over the border from Yuma, AZ where a doctor there uses either sheep or lamb stem cells. It's one of those things not done in the US, but I am hoping to learn more about this. We talked to this man, but there had been strong winds that damaged his fifth wheel and when we were at that Park he couldn't find the information on that doctor and I didn't know enough to even google it. I'd surely like to know more about this, however.