My Dad was diagnosed with PD 14yrs ago. His only symptom was a off and on tremor in his hand. He was able to cope and function very well. Then hallucinations started, seeing things and people. He realized they weren't real and took it in his stride. Then the blank facial expression gradually appeared and an off and on drooling.
Through all this he was still Dad: could do things,,,carry on a conversation.
However, in the last 3yrs we've watched him decline even more. He's now 78yrs old and physically he's not bad. Fine motor skills seem to bring on the hand shaking,,,he's stooped over,,almost looking at the ground and sometimes I see a shuffle in his gait. Mentally, he's really lost ground.
He really can't carry on a conversation, at least with us.
Sometimes he talks better to the make believe people then with us. He can spend hours putting socks and shoes on and off or he'll change his clothes 3 times a day for no reason. If he becomes restless,,,,Mom knows it's going to be a bad day or night.
I could go on, but hope you get the picture. What I was wondering is if anyone knows if dementia is caused by PD or in my Dad's case,,,,just a natural progression with age. His meds have been changed through the years but there was never any significant improvement.
He's become a handful for my Mom and my 2 sisters and myself try to help out where we can,,,but if there are any caregivers here that can offer any tips, I would really appreciate it. Thanks, Lorry
Lorry,
Welcome to healing well.Hopefully you will hear from some caregivers wish you and dad the best.
Ed
Welcome to healing well.Hopefully you will hear from some caregivers wish you and dad the best.
Ed
My mom had dementia from a stroke and doctor said it was a chemical imbalance.
Lorry,
It's tough being a caregiver. I have PD and have great respect for spouses, family, friends who stick with those of us with PD. Thanks!
I was diagnosed with PD in 01. I'm fortunate that my symptoms are minimal and manageable. The incidence of Alzheimer's is greater among those with PD than the normal population and it certainly is a difficult challenge.
Your father's hallucinations may be due to his medications. Mirapex, in particular, is known to cause hallucinations. The same may be true of Requip. I'd definitely talk to your neuro/doc about the hallucintions.
I would encourage you to become involved with a PD support group. It can be overwhelming initially, but hopefully will provide you support and ideas as a caregiver.
Hopefully you'll get some feedback here or elsewhere from some fellow caregivers. We appreciate you!
Lizzy4451@yahoo.com
Life is a dance. Don't sit it out. --- H. Jackson Brown
Life is a dance. Don't sit it out. --- H. Jackson Brown
Lizzy4451,
Thank you for your response, insight and suggestions. I have looked into support groups but there are none close enough to where my parents live. But, I will check out any close to me.
Dad was put on seroquel for the halluncinations but it had him up and wandering all night. So Mom halved the dosage and still no good,,so she stopped it. The only other meds he takes are sinemet and benztropine. His neuro prescribed Aricept for the Alzheimers a few weeks ago, but there is no improvement. I guess there is no magic pill, although the neuro said there are many pills to try. Personally I feel there is no going back, he's lost too much ground mentally. The goal now should be how best to take care of him and keep him safe and how to keep Mom well. She has given up so many of her activities to take care of him and the isolation is taking it's toll. But, we are working on this,,,,whatever we can do to get her out is a plus. She has always put other's needs before her own and deserves so much more then a few hours here and there. We do what we can, right? Unfortunately, it never feels like enough. I will keep trying though!
Thanks again
Lorry
hello my name is donna and my family is dealing with my mother who has parkinsons/atopic dementia. she is now on senimet and seraquel she was diagnoised this time last yr but we do not know how long she had it she was first put on meripex which worked well for about 9 months. the meds she is taking now do not seem to help with the horrific hallucinations mostly at night no one is sleeping anymore. she has problems during day to but nothing like at night. physically she seems pretty good. she showers dresses and puts her makeup on faithfully everyday she does laundry but she can not seem to focus for more then a few minutes. we are not even sure of the dementia we like to know is it the meds. the seraquil does not seem to help her. part of the family says what if we take her off all meds and see if it is the meds that is causing the hallucinations (when i say horrific i mean horrific) we all feel lost we been thru a few different drs. we dont know what to do. we like to know is she at a late stage of parkinsons maybe a idea of life span. or will she live like this for yrs. she is scared to death of the hallucinations she thinks my sister and her husband are trying to kill her. but then she realizes what is happening to her. it dont make sense if anyone can help here and tell me if u have dealt with this maybe u can lead me in the right direction. i rather my mom have quality of life not quanity. thanks for listening donna
Donna ,
Welcome to Healing Well,It very well could be the meds ,and a change or adjustment might be necessary.I am on mirapex ,sinemetand comtan,and had to stop taking mirapex at nite .I would get nitemares and vivid dreams.These stopped when I stopped my nite dose.However everyone is different with the same med.I would say this :Don't stop either mirapex or sinemet abruptly this is very dangerous,and you need to work with your mothers neurologist.Your mother can request a report from the dr.with each visit ,and this might help answer your questions relative to the progression of the disease.I wish you and mom the best.If you have any questions feel free to email me or stop by the forum again welcome the light is always on here.Ed
Ed-Diagnosed with Parkinson's Disease in 1998.I am also Diabetic,and have major arthritis issues.As long as I can fish life is good.
Welcome to Healing Well,It very well could be the meds ,and a change or adjustment might be necessary.I am on mirapex ,sinemetand comtan,and had to stop taking mirapex at nite .I would get nitemares and vivid dreams.These stopped when I stopped my nite dose.However everyone is different with the same med.I would say this :Don't stop either mirapex or sinemet abruptly this is very dangerous,and you need to work with your mothers neurologist.Your mother can request a report from the dr.with each visit ,and this might help answer your questions relative to the progression of the disease.I wish you and mom the best.If you have any questions feel free to email me or stop by the forum again welcome the light is always on here.Ed
Ed-Diagnosed with Parkinson's Disease in 1998.I am also Diabetic,and have major arthritis issues.As long as I can fish life is good.
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.
Post Edited (yekkimo) : 11/2/2005 6:07:05 PM (GMT-7)
HI ED. APPRECIATE THE RESPONSE THEY ARE GOING TO START HER ON CLOZARIL THEY SAY IT GETS RID OF THE HALLUCINATIONS BUT U NEED BLOOD WORK ONCE A WEEK CAUSE THE MED COULD CAUSE A FATAL BLOOD DISEASE. I READ about ALOT OF PEOPLE WHO HAS HAD IT FOR 14YRS OR SO AND THE DR SAID LIFE SPAN IS APPROX 9 YRS FROM ONSET. EVEN KNOW WHO KNOWS WHEN ONSET ACTUALLY STARTED. DO U KNOW ANYTHING ON THAT. THANKS DONNA
lorry i hope u will find someone here to help u........
jistin
jistin
I am new to this site today. My husband is a vietnam vet and has just been diagnosed with Parkinson. I am really trying to get everything together for him at home . I am reading books and trying to make my home handicapped accessible. This has taken over mly entire life and I think of nothing else.
nurse
nurse
hi, i am a caregiver of a parkinson's patient. she has this disease for 19 years now. i've been with her for four years and i have experienced almost everything in this discussion. first, my patient cannot walk due to surgeries. she has severe dystonia on her left arm and hand. we get botox on this arm every 3 months. second, she is taking about 8 sinemet, 5 sinemet CR and 4 mirapex for parkinson's, and some other pills for pain, arthritis, etc. last year, she had very severe hallucinations. she would talk to these people who we could not see, complain about scribbles on the walls, see little people, people having sex on her bed and somebody stealing from her. we discussed it with her neurologist. she took abot 8 seroquel a day. so, her neurologist replaced it with zyprexa. her hallucinations went away in about a week. and to my astonishment, it never came back. also, we asked he neurologist about her life span, and the response was, she can live as long as possible because she has a healthy body. it's not the parkinson disease that will shorten her life but infections or other complications she may get. i hope my insight and experince will help a little bit.
Hi - If you research Sinamet and it's side effects it too can give bad Hallucinations and nightmares, especially after taking them for some years..
For my PD I was taking 6 250/25 Sinemet a day. As well as 3 1mg Sifrol. For a long time I blamed the Sifrol, but when I did a cut back test with Sinemet The hallucinations became much less. My Neurologist has now changed the Sinemet to Madapar which I believe is unavailable in the USA. Does anyone know the reason for that? It's back to a small dose slwly increasing again - already I am sleeping better (after 3 days)' and my anxiety has all but gone.
I wish you all the very best. - Des
For my PD I was taking 6 250/25 Sinemet a day. As well as 3 1mg Sifrol. For a long time I blamed the Sifrol, but when I did a cut back test with Sinemet The hallucinations became much less. My Neurologist has now changed the Sinemet to Madapar which I believe is unavailable in the USA. Does anyone know the reason for that? It's back to a small dose slwly increasing again - already I am sleeping better (after 3 days)' and my anxiety has all but gone.
I wish you all the very best. - Des
Caregivers, There appears to be a great deal of difference from one person to another in how PD progresses. As a PD patient that has always been my biggest worry, how long before I can't walk, how long before this and that? Although I have retired I hope that I am still contributing something to the world somehow. Although it isn't as easy as it used to be I am still here at the keyboard and hopefully still making a little sense. Sometimes my better half thinks that I am spending too much time at this, but I explained to her that I am trying to keep my mind active and that is important. Staying as active as possible, both physically and mentally, seems to be the key. I got the wild idea a few days ago that I would start a blog and I suscribed to something on the net that would help me begin. I realized immediately that I was in way over my head technically and backed out. So we do have to be careful about decisionmaking among other issues. If you haven't seen it yet please see the thread called "last stages". Don't let the words scare you. There is a lot of info there for caregivers and you can choose what you take from the reading. I will do a burp, excuse me, bump to bring it back to the top. Hey, sometimes you gotta laugh or cry and I prefer laughing.
Post Edited (gtmriviera) : 5/20/2010 5:06:48 PM (GMT-6)