The left leaning was so bad today that Sandy had to get back into bed after only being up for a couple of hours. He was afraid he was going to fall out of the wheelchair if he stayed up and I have to say, I think he may have. I used the Sara Stedy to get him seated onto the bed. He was starting to fall over in the wrong direction and I literally had to push all my weight on him and lay on top of him to get him in bed before it became impossible. The last time it was this bad I had to call the medics as he was doubled over in the wrong direction.
When he does this leaning business, his body gets so rigid and his legs feel like 50 pound weights stuck to the floor so it's very difficult when I try to swing them up onto the bed.
This is getting ridiculous! After getting him onto the bed, I thought "what are we doing? How did things get this bad?"
He had 2-3 days of terrible leaning, then 2-3 days of being very straight, now back to leaning. During the straight days, I thought he was doing pretty well and maybe we wouldn't even use the electronic hoist once it's installed. hahahaha
Six more days until the contractors arrive with the ceiling mounted electronic hoist. Can't wait! Praying things hold together until then.
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journeyofjoy
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I’m sorry that Sandy’s body is so rigid! We went through this phase but thankfully it was short lived. The doctor experimented with Carbadopa-Levodopa and it worked! Have you tried this drug? It doesn’t work for everyone but it might be worth a try. What do you think?
You’re correct. First dx was CBD but doctor changed dx to Lewy Body. The doctors main reason for the different dx is because of hubby’s positive response to the dopamine drug. I think it’s odd because 80% of people with LB have hallucinations and/or delusions. Thankfully my husband isn’t experiencing either of those symptoms. It’s a mystery for sure! Also, I can’t pinpoint how long he’s been sick so I have no starting point of how long he’s had the disease. Frustrating!
So thankful he isn't experiencing hallucinations. Hopefully he'll stay in that 20%. And it is hard to pinpoint onset of illness. To the best of my ability to guess, Sandy's troubles started about 5+ years ago.
It would be nice to have a timeline but it’s not really that important. My husband started having fainting spells in the late 90’s. In 2005 he fainted and broke his neck. He’s fused from C3 through C6. For several years after neck surgery he was on some heavy meds for pain. I’m sure that all took a toll on his body and probably his brain but he seemed okay to me for having been through so much.
So... I ask myself these questions: Did the disease start with fainting episodes in the late 90’s? Did it start after the neck surgery? Did it begin in 2013 when he had emergency gallbladder surgery and developed sepsis? Maybe it didn’t start until his gait and mobility started acting up around 2015? His speech issues came later, around 2017 (I think). We had 15 really good years together when we were so young and adventurous. I miss who we were before all of this sickness. I’m lucky though. I feel like I have had many second chances with him. He’s my Ever Ready Energy Bunny that just keeps on going. He is the best thing that ever happened to me!
Well now that's very interesting our neurologist said that the diagnosis of Lewy Body and the use of the Carbidopa levodopa with a bad response or negative response meant that the Lewy Body diagnosis was correct
That is interesting because C/L is working very positively towards my husbands symptoms of rigidity and gait. That’s why the doctor ruled out CBD. Other people on this site disagree with my husband’s dx, I kind of do too. Maybe the doctor labeled it as LB so that he can become part of a LB trial coming up next Jan 2020 🤷♀️. I cannot explain any of this. I am going to get to the bottom of this post mortem and find out for sure. We’ve agreed to donate his brain to science for study. No rush of course. Lol
Hi. When Nigel's lean became much worse and then inevitably went rigid it was usually a sign of infection. I can appreciate your difficulty in getting Sandy back to bed. I can laugh about it now but it ended up with him sort of at 33% on the bed with me on top of him.
Nigel had CBD and had hallucinations when put on levodopa with no physical benefit. I am surprised to hear of the LD diagnosis as I have two friends whose husbands have LD and they have very different presentation to Nigel's functioning loss. I am still waiting to hear the results of Nigel's brain donation. They have said that it should be in January. Big hug and all the best and I hope the hoist is a real benefit. Love AliBee
Hello. I am just now catching up on the site after quite a while because i have been so overwhelmed with caring for my husband. We saw another neurologist early this month ( Jan 2020) who recommends nothing new. I still question the LBD diag for several reasons. I see that you are expecting a report from brain autopsy this month. Are you able to share anything yet? God Bless
Hiya. No nothing through yet. I will wait patiently. I am pleased to see that you are having a bit of space to come onto the site. It always helped me when I was overwhelmed. Big hug and God bless. xx
Sounds very familiar to my husband. Except he lean to the left, right (though not so much now) or bent over. I really don't know which is worse. But when bent forward, it's very hard to get food into him. I stick to yoghurts or soup through a straw. Every day is an adventure only not a good one.
What you're describing is just the beginning of why my husband ended up in a care home. With no more help than I could find, I just couldn't do it anymore. I hope you have better luck.
I couldn't do this without help. Currently, I have 19 hours/week and will be increasing. I should probably be increasing hours right about now but it takes some thought and planning before just jumping in. Our caregiver who is here 16 hours/week is absolutely wonderful. We have another guy three hours/week. Bringing in someone new is always more work.
The track/lift system which was supposed to come next week has been delayed due to shipment problems. I'd been counting the days until installation.
In the last couple of weeks, Sandy has been spending more time in bed because it's tiring to sit up in a wheelchair and if he's having a "leaning day," it's almost impossible to sit in the chair. Thankfully, he has an electric adjustable hospital bed with a good low air loss mattress and a TV in the room.
I think I may look back someday and wonder how in the world we did this. I can't imagine a few more years of this but if he continues to progress at the rate that he has in the last 6-12 months, it won't be that long. God only knows.
My husband could never sit in his wheelchair for more than 1/2 hr or so. We always transferred him to a recliner because he said it hurt him to sit in the wheelchair. He also leaned like Sandy so he was always a fall risk in the wheelchair. In the recliner, we could prop him up some with lots of pillows. The caregivers were better at this than I was. I think it was mostly because he tried to help a little when they did it, but with me he didn't.
Sandy doesn't use his recliner much at all anymore although we bought it especially for him. It is a lift recliner so it raises him up to stand. That worked for a while, but hasn't for quite some time. He ends up so crooked in the recliner, falling into one side. I may try putting pillows in before dropping him in there.
He likes to sit at his desk using the computer but those times are getting shorter as the chair gets harder to sit in. Thank goodness for TV. I don't know what he would do without it.
I see it's only been since May that you lost your husband. I am so sorry. Although it was probably a relief of some sort, still it must be very hard.
Thank you for the kind thoughts. I guess it would be hard, but I'm convinced he's in a better place. It was so hard watching him lose everything that there was no way I could wish that he had lingered any longer. Even now, mostly what I feel is relief. We had a great 57 years and I have great memories. We both had great health until PSP caught up with us. I think we were mostly lucky.
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I am new to the group and would like to connect with CBD patients and families
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community deprivation of liberty order
Memories continued...
