Hi all, update on my wife (CBD). For the past three years her left arm has been locked across her chest. Eight months ago she had some botox (botulinum toxin) injected into her arm, ( pectoralis, bicep, forearm and thumb). This is to be done every three months and I must say it has helped relive the tightness and pressure in her arm which now hangs freely, although she is still unable to put it to any use.
My reason for updating, as I have written about that before, is to make you all aware of the extreme dangers of pressure sores. I was aware that a person sitting or lying down all the time, in the same position, is susceptible to pressure sores on the derrière, it starts with a small red mark and absolutely breaks down from there on, I use a quality barrier cream all the time (the one I use is called ‘Medihoney’ free for over 65s in UK from NHS) which I would recommend.
My wife has her left hand clench all the time, on which I put a palm protector, it has a thumb hole and a padded portion of sheeps wool which is held together with some Velcro strips. As it hurts her to raise the hand or turn it over and I tended to wash her hand without turning her hand over to view her palm. Imagine my shock and horror when the district community Matron came to do her six weekly visit two weeks ago and we spied the skin hanging off my wife’s middle finger pad and the skin broken down, although not bleeding, one could see that damage had happened (see photo). I’m thankful to say it has all cleared up satisfactorily, but major lesson learned and I now but barrier cream on her palm and fingers, and I wash more carefully with more observation, less haste and not now on automation.
Look after your own health as you look after your loved ones, stay strong.
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Tjayoo
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My husband suddenly has tiny little spots of breakdown on his bottom. What worries me is how quickly they came.’ Thankfully they are healing nicely. In examining his body they also found redness on one heel. Now his feet have to be propped for sleeping. If this doesn’t work, he’ll have to wear boots at night .
It’s just another thing to worry about. I feel so sad for him, yet the pressure of care is so hard.
Best of luck to you. Sounds like you have it under control . Glad you feel strong and are taking care of your own health. Some days can be difficult. 👍🏽
I wish you well Karyn, thank you for telling us about your husband. Elbows and heels are both prone to pressure sores, just putting a pillow under the ankles so the feet hang over the pillow will keep the heels off the bed, elbows a bit more difficult, but barrier cream put on these vulnerable sites will help. All the best
Hi Kevin, I have read your past posts with interest. No my wife is on no medication what so ever. When she was first diagnosed CBD they put her on Sinemet (used for Parkinsons) but the little yellow pills made her feel nauseous so never took them again. I have like you and others searched for more natural ways to help her immobility, brain function etc but to no avail, from Lions mane (Amyloban) NGF, Brain Power +, Hemp oil, etc-etc. But I’m not giving up. My main problem is getting her to eat, everything blitzed down to ‘fork mashable’ but still does not eat much so losing weight and I can see the dreaded PEG on the horizon.
We are nearing the hand gripping stage, so this is very helpful.
Yes, we too found that the alternative meds. didn't seem to help. We even tried methylene blue. Now matter how careful I was with it Liz ended up looking like a Mentat from the film Dune.
Were on the liquid stage now. And like your the weight loss issue is to the for. However as Liz is not at all mobile a lot of (?) weight loss seems to be muscle wastage.
My Mum has CBD and her left arm and hand are the one that is contracted also.
She has a moulded splint made by OT to keep palm open as much as possible and it comes up her forearm. Also one of the padded ones as you describe but that did rub around her thumb so we had to stop using it.
Her finger looks so sore, pleased it has healed up .
We do arm stretch exercises with Mum to try keep the stiffness at bay and help keep arm from bending too far across chest. It does rest across chest but we are now able to stretch down to touch the bed, taken quite a while though to be able to.
Thanks for this Tjayoo: Hubby is mobile enough (not yet rigid) that I havent seen sores, but your point about just how quickly it can appear is well taken! I also tend to be in "auto" mode when showering or dressing him...I'll step up the "inspecting"....!
Thanks for sharing. My wife is beginning to clinch her left hand also and I would have never thought about pressure sores from that. I will keep a watch out.
Valerie had clenched hands and I gently massaged them with a good body lotion before easing on the palm protectors. It kept the pressure sores and sweaty palms at bay.
I know I said I wouldn't post yet but I can't ignore those of you who still have loved ones with you.
Hubby Leon also has left arm clenched, and his fingers cross over and close up on each other, have to keep a close eye on them, because the staff at the nursing home are not up to speed with P.S.P. it is up to me. Frustrating, so so frustrating. He often says I cannot live like this anymore, but yet says he is not ready to give up yet either. He only has an amazing brain, so naturally just thinks all day, the staff can hardly work out what he wants, so I leave notes daily and try to explain to as many as possible of his ailments/symptons/happenings of P.S.P, often wonder if they really care
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