So, in the space of a weekend my ‘not very good right hand’ is now in cahoots with my arm and the arm refused to do anything I want. Over three days, my right hand has formed a tight, clenched fist. This in turn means I can’t manoeuvre my wheelchair. On gettin to the bathroom husband has to unclench my fingers, one by one, and place my hand on the grab rail. We soon realised as he left the room, the offending hand/fingers/thumb were not going to reach in and hook into the elasticated waistband and pull trousers down. This of course lead to my peeing anywhere but where intended. My right arm and hand is Nelson like, in it’s 90 degree angle where it happily wants to remain.
I use a turntable to get to standing and then whoever’s helping, turns me on the footplate around and I can sit down without falling down. This is a great device but the stupid clenched hand complicates things now. This morning husband was trying to manage this to get me from being seated precariously on the edge of the bed to the wheelchair. It all went wrong. I ended up just about sitting on my chair with right leg sticking out, rigid, at 45 degree angle and me in great danger of sliding to the floor. To cut this very long and graphic story short, I was eventually hauled ungraciously back into the chair. There were tears and despair.
My OT arrived just after, for a prearranged appointment. She quickly realised it wasn’t a good day. I imagine the tears and snot as well as the piggy eyes gave it away. After much deliberation and surveying the rooms, it was agreed the time for a hoist has come. After being offered a choice of three, (smaller mobile one, over bed head one or ceiling one on tracking) we have chosen a small mobile one (for now) and this is arriving Wednesday. I always thought this would be the end of the line for me. I’m feeling scared at the speed of the progression and terrified at where it’s leading. Only nine months ago I was managing indoors with a rollator, albeit with difficulty. I was diagnosed five and a half years ago.
On a happier note, my upgraded indoor/outdoor motorised chair is due to arrive just after Christmas. December 28.
Apart from Boudica on the forum, I don’t know anyone else who uses a hoist. Any thoughts or words of encouragement or otherwise anyone?
You have had the worst ever disease progression. I am so sorry it’s been this awful. Thankfully you’d had the new wetroom finished before this last indignity afflicted you.
I promise I will be writing in more detail very soon.
Try not to despair too much…yeh, I have used a hoist for 8 years or so. But its not the beginning of the end..its just another dimension to our wonderful (not) journey!
You may have seen recent posts from Tom1. He is his wife`s carer and they have just got a hoist.
These mobile floor hoists are good, but really they need 2 people/carers, to use them. My upper body isnt too badly affected and I can hook slings up, but found my feet got banged a lot. They are hard to push on carpet.
We tried one for 3 weeks and then gave up and requested ceiling hoists instead. These are so much easier to use.
I got mine funded by the local MS branch and local authority.
Now regarding your clenched hand, maybe it is in spasms and will uncurl…what about a steroid injection into it?
Thanks Bouds. I have help every morning from one of four very lovely, very capable ladies and Mr Poppy is always around. To my amazement the hoist was delivered this morning as my help arrived. My lady helper announced that she used this on a daily basis and confidently rolled me into the sling on the bed, hooked me up and away we went. All the floors are hard surface too so no problems there. We’ve been blessed with the provision of care and equipment from the Health Board here in Ireland.
Thanks for the suggestion of the steroid injection. Only saw the neurologist last week so too late for that. Wondering I the GP could provide this. I’ll ring her shortly and ask.
Still a weepy Poppy, feeling like a sack of potatoes being carted about.
Thanks for making me smile Carole. A sack of sweet potatoes!
My OT is an amazing woman! She comes for a visit, observes what’s occurring and what needs to be rectified and gets the job done asap.
Been in touch with GP who was reluctant to interfere with the neurologists patient. Understandable. She’s known to be a formidable lady but she and I have a great relationship. I got on to her secretary who told me she’s away until Monday but my queries would be relayed. I’m hopeful for some practical response.
Hi Poppy, so sorry to read of your troubles. Sounds like you have a good team around you so I hope you are feeling a little less sad at least. You really have been through the mill. Hopefully the motorised scooter thingy (sorry having foggy moment) will enhance your life. What part of the fair island of Ireland do you live in? I believe the MS help in Ireland is good? I love Ireland and you wonderful friendly people. I hope you are soon feeling better and the pesky fingers start to u curl themselves. Let us know how you get on. Hope you get a good nights rest. Anne x
Popps, Ive just looked up steroid injections for spasms and Im sorry but I`d got it mixed up with joint inflammation…sos o so sorry for misinformation. I wonder if there is something similar?
I hate this disease. I don’t want it. I don’t want more adaptions/gadgets/things to help. It’s all crappola and my stupid body just loses ability, little things on a daily basis and I hate it I hate it I hate it. I feel for you and hope your latest gadget does help but I’m sure it’s mentally draining. Xxx
Sorry to hear what a rubbish time you are having, although the rapid access to a hoist is impressive. I also wanted to offer some kind thoughts to Mr Poppy, MS messes with far more folks than just those afflicted. I really hope the hoist makes things safer and more comfortable.
I am in total agreement with Slug & Ssssue MS is a total life changing git.
I really hope we all have some brighter times soon.
Thanks Anne. They are indeed a wonderful team. I really can’t praise the people enough.
Getting the motorised indoor/outdoor chair will be great. Essential now, as only pushing with my left hand not only makes me go around in a u turn, it’s flipping painful. Impossible. Any remaining scrap of dignity has evaporated. Mr Poppy pushes me to the wonderful new wetroom where all the shiney chrome grabrails are. But now I don’t have the power in my legs to push up from my chair. He has to push, while I pull on the rails, then yank trousers down as I can no longer get my right hand/thumb into the waistband to do so myself! And again in reverse…
I’m on the coast in the south west. We’re fairly rural in setting but actually not too far from a couple of large towns. Stunning scenery from the doorstep. X
Popps is okay. I’ve been called worse! I had four injections of Botox in my hamstring, three months apart to try to ease rigidity this year. Totally ineffective for me.
That’s the truth Slug. I HATE it! Same as you, although I’m grateful for the financial assistance to build the wetroom extension, I was quite happy with our tiny cottage. Until ms, I felt like Benjamin Button, growing younger!! Now aged sixty, I feel like a little old lady. Facially and in my head I’m still 49!
Yes the hoist is great, and so helpful, but I lie in bed glaring at it and hating it. Still, all this growling won’t change things and won’t make me a nice person to be around. Maybe I should teach myself to like Gin!!
Yes Mick, we’ve both said from the start, it’s not just me that has ms. We both have it. I’m totally confused how this latest change in me can have happened over a weekend.
