Would be interested to hear from anyone with a LO having Lewy Body who also has a few Parkinsons symptoms as well. Does LBD have spells where it appears to be not so severe? For instance my hubby has for the present lost his shuffle, still has to use a walker as he would fall without it, but this area has been quite good for about 4 months. Still has a slight tremor in his r/arm & very little use of his l/arm. He still gets disorientated & lacks judgement on distances. The Dr seemed to think he may only have limited vision in his left eye but this has never been proven, but for the fact he never walks in a straight line or judge the distance going through a doorway for instance. He has put on a bit of weight & looks so much better, now prior to the New Year he was a mess to say the least. Am wondering how much longer the 'wellness' will last. Almost as if he is on a plateau, he has done this before, but not for so long. In fact that is how it appears to be running in a pattern. How have others seen this disease progress?

Sunflower

Sunflower, back to your original question, yes my mom very much has periods which are better or much worse. Sometimes she changes dramatically in one day, sometimes she's better or worse for many days at a time.

Mostly, her cognitive abilities are the big fluctuators although they are generally in decline. And her mood is always depressed.

The huge change (a decline) in the parkinson-type symptoms was concurrent with her beginning Risperdal. Her delusions and hallucinations had become dangerous and couldn't be managed otherwise. The doctor at that time had diagnosed either "bi-polar affective disorder" or "very late-onset schizophrenia" plus "dementia" (generic). He was not very familiar with geriatric patients, lewy body disease, or able to recognize the tremedous side effects of the Risperdal--but put it all down to age related decline instead.

Last Thursday I was finally able to actually SEE the doctor with her and I brought along a printout from this site: Unified Parkinsons Disease Rating Scale.

On it I indicated how mom is now functioning according to each of the criteria by circling the corresponding number, and he had an easy to scan, quick rundown of how serious things were becoming. Alarmed, he immediately refered us to another psychiatrist who deals almost exclusively with geriatric patients.

The new doctor agreed that Lewy Body was certainly the proper diagnosis. Since Risperdal has helped so much, he did not take her off of that (thank Heavens!) but he added Amantadine (generic for Symmetrel); which instantly produced an improvement in her physical symptoms (choking, shuffling, getting re-positioned in bed, balance/falling, incontinence...well, you know).

But when I mentioned that she was on Namenda and that I had read that it was incompatible with the Amantadine---he had some trouble finding out why--it seems it's not widely published info and even the pharmacists he consulted took quite a while coming up with the explaination.

Finally, he removed the Namenda and left her on Exelon, Risperdal and Amantadine. My only worry now is that one day she may feel so well that she'll announce that she's moving back to her house which would never be feasible, anymore. But she's such a headstrong lady that one just never knows what she may "decide" next!

My best to you,
maria

This message has been edited. Last edited by: mariabee,

There's also a Frontotemporal Disease with Parkinsons too.

Asa and Lori,

Thanks SO much for posting the LB links! I've been researching for what seems like forever, knowing that my mom's dementia seemed "different" and couldn't quite put all of the pieces together. After having read extensively (nearly all night and this morning) I'm now certain that LB Dementia is what my mom is experiencing. It helps so much just knowing that others have seen the same strange progression, and to now know why mom is physically declining so rapidly when it was never an issue before. Also something that was previously puzzling was that the hallucinations and delusions were so intense/vivid and presented so early on! So many answers, finally! (((Hugs)))

...and her doctor told me that it didn't matter what type of dementia she had as the treatment and prognosis would be the same regardless!!!

Oh well, onward and upward from here...!

Hi -- I suggest you try the Yahoo Group for Lewy Body Dementia. It's very active and a lot of knowledgeable people there. http://health.groups.yahoo.com/group/LBDcaregivers

The 3 key characteristics of LBD are parkinson symptoms, fluctuating periods of lucidity and confusion (I find the PD symptoms fluctuate, too) and visual hallucinations. Having 2 of these, along w/ dementia, is a probable LBD diagnosis.

Many recent postings have been on the visual problems our LOs have -- so there does seem to be a connection there, too.
Best to you,
Lori

I recommend that you look at Lewy Body Journal at http://www.lewybodyjournal.org. It is a website with a lot of information about Lewy Body Disease and caregiver information.

Faye

This is a very difficult question. Mom was diagnosed with AD. However, looking back and being more educated on different types of dementia, I now wonder if she had LBD instead of AD.

She had a period of 9 months where there were no declines. She also had Parkinson's.

Vicki

Sugarlips

Sunflower, my husband has Parkinsons only.One of the biggest problems is with perception.The doorways, sitting in a chair and getting in and out of the chair.He does not shufle as much since he has come home and was placed on the correct mgs.of medicine.We had ben told for years that he had eye hallucination from a mini stroke he had.He no longer has that problem.The times that he has had the most changes is when he has a urinary track infection or the results of medicines.He is also been placed on medicine for hypertension.They remove all medicines for the constant urination.The percepton has caused extremely bad moments.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.