Tuesday Jan 22, my husband had his neuro appointment checkup. They upped his DBS devices to 3.7 & 3.9.
Doctor said he seemed he was doing a bit better. I bought him the Parkinson’s walker, with the laser. Hand grips to release wheels. It’s been helping him to not fall.
On 2/1, yesterday, we officially moved from our split-level house, with no room to safely walk or use the walker, to a 1-level condo.
His walker allows him to go everywhere.
Problems:
1. When I loaded him in the van to come here, he kept tipping forward on toes even with the walker, in a slow motion forward tipping.
2. He struggled to even walk through the condo. I sat him at the kitchen table.
3. At 4pm, he walked down the hallway where I was putting away food in the pantry, and as I went to the box, I heard a crash, he pushed the doors to close and completely knocked new doors off the hinges. So, no door now.
4. At 4am, just 30 mins ago, I heard a crash in the bedroom (800sq ft of space) and he fell on the floor. I thought he messed up his walker but fixed it, and got him up. He walks with it, but his feet won’t step, he leans forward and I keep reminding him to slow down and rest before stepping.
So, I’m wondering if this will even out?
Is it just a new change and he needs to adjust?
Is the emotions of moving out of house he lived in for 30 years, messing with meds?
Or, is he really this bad?
He had DBS in June&October 2016, it’s been 2 1/2 years, and he’s already at 3.9v out of 5.0max.
I bought this place because he can use elevator right outside our door to take kids to school bus. It pulls right up to the lobby. But now I’m freaking out because I go back to work Monday and he’s so imbalanced.
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Somewhat like your previous posts, this one says little about how "he" sees things.
If he is not very communicative with you, perhaps you could ask his brother/sister/friend to help you to understand how he sees things, and if he wants any help.
Maybe you didn’t mean it in the tone I took it. But I took this as a criticism. He can’t talk very well. He doesn’t have friends. So yes, this is my POV.
I'll give my opinion but it may be a little stress. It can really affect things. As your comment of moving it of the house he had had for 30 odd years. Memories and everything else may be affecting him a bit. The comforts of home are but aren't there.
It may take a while but also if you can leave a note to your Neuro. If their listening they can help maybe up medicine or you can if they let you adjust his programming the small amount.
I'm sorry for the tone of my initial response. Instead of relying on memory, I should have gone back and re-read all your previous posts and responses. I've now done that.
It is my understanding that he still has a younger brother. If those two are still in contact, I still think it might be worthwhile to contact him to try to get a better understanding of how your husband sees things.
You describe how your husband struggled with the walker both during the move to the condo, and once inside the condo. When he went to the neuro appointment on Jan 22, was he also struggling in a similar way, or is this something very new? If it is new behaviour then maybe things will improve when the stress of the move has passed, and he has settled into his new environment (as CplParkinson has said).
I experienced the tipping forward when walking when I went off meds for a year. It was very bad when I was out, but better and manageable when I was home, so maybe as he becomes more familiar and comfortable with the condo things might improve.
My husband has PSP ~ I call it "the falling disease" . He gets anxious with changes and it effects his walking a lot. I try to keep us calm and in a routine. Sounds like you have a bysy life - that's good, too! If I'm stressing out it spills over to him as well. Ince you settle in , he may relax. He has zero control over the falling.
Is he able to take B1 as in Dr Costantini's Thiamine protocol? It has stabilized my husband...not more falls 🤞. I am not sure if this is possible after DBS....
I do feel for your difficulties, especially the risks of leaving him at home alone. Are there any alternatives? From what you write, it really doesn't sound safe.
While you are trying to sort things out, there is a carpet that looks like stairs. For some reason Parkinson patients become able to walk better when they are on it. I haven't heard anythings about it lately, but you might want to look at this. I have seen rugs with the design .youtube.com/watch?v=Lc-8gzT... the design
I don't know if relevant, but when my PD husband started falling, part of the problem was that his blood pressure was dropping too low - Carbadopa/levodopa can lower BP, which, on top of other BP meds pushed him down. We found anytime he was under 120 his balance was off (he's now off most BP meds, to the distress of his cardiologist). I've also found that his vision has been getting worse - he doesn't seem to 'see' things that are directly in front of him - when walking he bumps into things or even if I give him a cup of water (in a brightly colored plastic cup) or something like that. Per MJF PD materials, vision issues come with PD. He has also started stepping over imaginary obstacles on the floor (PD hallucinations?)
As a caregiver, I was offended by one of the remarks on this forum. Not only are we there for every appointment, from the first diagnose, to watching our loved ones gradually lose their independence, to realizing our journey together is not at all what we expected. If I left my husband's care up to him, he would not take his medication on time, eat an exorbitant amount of sugar, not move his body and watch television all night. I am his cheerleader, I need to keep his spirits up during his depression. I am the one that visits these sites, calls the doctor for his appointments, and does the research, while working part time, taking care of 5 grandchildren and trying to keep the family together with a smile on my face! I may have to sell our forever home to move into a senior condo, (mainly for safety reasons) due to this disease. I am only 61 and this disturbs me terribly. So, before you condemn the caregiver, give us a break, we are doing the best we can!
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