Late stage Parkinson's - Parkinson's Disease Message Board

tamara29 · 05-24-2006, 09:16 AM

Hello everyone. My granny, who was recently diagnosed with Parkinson's Disease, has now started having dementia. I know Alzheimer's and Parkinson's can go hand in hand, but her doctors have told us her brain shows no signs of Alzheimer's whatsoever. Her neurologist told us yesterday that the dementia is part of the Parkinson's, it will get worse but there is a medication he can give her which is not guaranteed to work. I am devestated by this. She was getting better physically, had even walked with the help of her walker and physical therapist, was up out of bed more and even her emotional well being was better. She could tell she was getting better. And now this.

I guess my question is is this late stage Parkinson's? Do you know what medicine he could be talking about? She goes back to see him in a little over a week, and he's going to give it to her then. Does this mean the end is near because she has dementia now? Thanks for any and all advice.

cathie67 · 06-21-2006, 07:18 PM

Tamara,
My dad also has Parkinsons, and hallucinations. His neurologist has said he has Parkinsons with Lewy Body Dementia, which is another disease in the PD and AD class. It doesn't sound like your granny is in the last stage, maybe the 3rd. He takes Haldol for the hallucinations only because that is the only thing that works for him. All other types of this med, Abilify, Seroquel, Resperidol,...make the hallucinations way worse. They don't like to give Haldol because it exaggerates the Parkinsons symptoms, but it is the only thing that works for him.
My dad has been through that and is in the final stage of PD as we speak. My mom and I could no longer care for him at home by ourselves and it was taking too long to hire help to come in, so unfortunately, we had to place him in a nursing home. The only reason I have felt no guilt for making that decision is because had he stayed at home, I would've had a double funeral - him and mom. When he went in the nursing home, he was still able to walk, eat, drink, talk, and laugh. Now he does none of that. We recently made the decision to have a feeding tube inserted so that he could get nourishment - he can still whisper my name if I ask him who I am and tell us he loves us - so I find it hard not to do the feeding tube. He just got out of the hospital for the 2nd time in a month because of a UTI. But him and my mom just celebrated their 41st wedding anniversary on Monday - he wouldn't let go of her hand in the hospital!
So, Tamara, no I think you have plenty of time to spend with your Granny...just savor and enjoy every minute and keep reminding her how very much you love her. Best wishes to you and her always!
A friend, Cathie

tamara29 · 06-24-2006, 10:47 PM

Thanks Cathie,

Her doctor had her taking her PD meds three times a day, and he told us to stop giving her the mid-day pill. It worked like a charm, no more dementia. She is doing rather well right now, and she is receiving occupational and physical therapy three times a week.

I know it must have been hard to put your father in the nursing home. My grandfather has been dead for longer than I have been alive, so my grandmother's children and grandchildren are the ones who are taking care of her. Right now, we are doing well. I don't know what will happen when she gets in later stages. I try not to worry about it too much right now.

liz49 · 07-04-2006, 05:39 PM

Tamara,
My heart goes out to you. My sweet daddy died last year from Parkinsons. He had dementia, towards the end, and I think that was hardest of all to deal with--him kind of "coming and going", a couple of my sibs couldn't take it and stayed away, but as mom was his caregiver she needed their support so it really hurt her. There is no timetable for this awful disease, and no way to tell how quickly one person will move from one stage to the next. My dad did not want to die during the holidays and tho he was mostly unaware of things, he did manage to hang in until it was New Year's day, at about 12:45 am....we all told him we loved him, that it wasn't a "real" holiday and that he could go. He passed peacefully in the end, at home, surrounded by all of his loved ones. I am glad you found a solution to this problem with your granny. I hope you can just love her and when the time comes, let her go w/o any regrets.

hopeful harry · 09-05-2006, 09:45 AM

Hi

I was urged by a friend to listen to a webcast today by a UK Biotech company Oxford Biomedica. On several accasions they referred to a product called Prosavin calling it 'truly stunning' and that the pre-clinical tests effectively cured. They are giving 'chapter and verse' on this iN November when they anticipate regulatory approval to commence trials. Has anyone heard of this? It will be trialled in late stage PD first.