For those who care for someone with Parkinson's disease
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Topic Not sure where He's at??? Go to previous topic Go to next topic Go to higher level

By monopoly17 On 2010.03.21 12:24
My husband has PD for 14 yrs. He's 68 yrs old. He fell and broke his hip in Oct. He went down hill from there.He doesn't know where he is half the time. He can't remember our kids names and has hallucinacions.He thinks he's being held prisoner for some reason.He has alot of control problems as far as cleaning himself and eating.
He has lost about 40 lbs since he broke his hip. He does eat well.
I was wondering what stage he'd be in?How many stages are there?When is Hospice available. I'm disabled myself and have been caring for him It's getting really hard. Espeacially when he's up all night.Any suggestions? Please help.

By Emma On 2010.03.21 14:16
Hi and welcome to the forum!

My husband is the same age as yours and has had PD for 8 - 10 years (depending on whether you go by the date of diagnosis or date that symptoms first appeared). He has some, but not all, of the symptoms you describe. Is your husband taking pain medication? Sometimes that can cause the hallucinations and other cognitive behavioral symptoms. As far as the stages of Parkinson's, there are five. You can do an internet search for Parkinson's stages and find a lot of information. Everyone is different and no one probably fits exactly into the stages as described. I know that there are many people on this board who don't put much stock in the "stages". Personally it has been helpful to me to read about them, and as it happens, my husband's progression has followed them pretty closely. It's an individual thing. Fortunately my husband has not broken anything or had any surgery since being diagnosed with Parkinson's. From what I've read on this board it seems to not be uncommon for people to go downhill after a surgery. I'm sure that you will get some answers and insights from people who have been through it.

I have sympathy for you. It has also been getting harder and harder for me to physically care for my husband as well and I'm not disabled. I can't imagine how difficult it must be for you. Please try to get some help, whether it's Hospice or an in-home aide or whatever. It's also possible that you are at the point where you can no longer care for him at home. I don't know. I do know that as caregivers we tend to ignore our own health and well being for that of our loved one. It's not a good thing, we need to always be trying to find a balance. Easier said than done. My heart goes out to you.

By mrsmop On 2010.03.21 20:00
My husband is age 66 and has had PD for around 10 yrs. When he developed periods of total freezing, he opted for bilateral DBS/STN about 1 1/2 yrs ago. It helped with his mobility. A year ago he had a total knee replacement, and actually did pretty well with his recovery. Shortly after his knee replacement he fell asleep and totaled his car. Fortunately, his injuries were minor. He just seems to bounce back. I think the DBS may have masked some of the Parkinson's progression. His executive functioning has declined, but it's been a slow decline. He is forgetful and very messy and disorganized but not demented. He has Restless Leg Syndrome, which has gotten worse, and more recently has started to complain of severe muscle tightening and body pain. This pain is his major focus at this time. I am thinking of consulting with a pain management specialist. Even though there are "stages" of Parkinson's, from what I have learned the timing of these stages is different from individual to individual. I wish I knew what his future holds.

By karnlowe On 2010.04.20 23:19
Dear lady. I have had very similar situations to what you describe. First, I would analyze the PD meds to determine if the side effects of any of them could be causing the hallucinations. Many do have such side effects. My husband is also messy and unorganized and sometimes putters for hours doing nothing much. He has had DBS about 1 1/2 years ago as well. The PD disease progresses even with DBS. My husband has been told he has "advanced Parkinsons."

Hope this helps somewhat.

By monopoly17 On 2010.04.26 21:50
Thank you all for your help.....Found out after having a pow wow with Dr and
Pharm that his meds he was taking for urine problem was causing alot of the problem. He's calmer now and sleeps better and so do I. The Dr. also said he has Parkinsons Plus. Anyone know much about that? The paper they gave me to read is all greek to me.

By karolinakitty On 2010.04.27 08:22
Monopoly .....
If you go to .. they have an excellent easy to understand descriptions on PD plus. Mine has the dlb or lbd... I've found it both ways it's dementia with Lewy Body or Lewy body dementia. There's several pd plus diseases and some, like mine, fall under the whole mess, even though the docs say it's DLB they need a label i guess.
After reading the Mayo's website i then googled eash disease to get the full knowledge of what they are and what to expect.... Also. the APDA has a list they published of drugs that give bad reactions with PD drugs.... It's free and you just had to send for it. I keep it in his file of medical stuff so when i go to the docs i have it and can look up any drug the doc wants to prescribe.

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