Struggling with Walking

[Milocorn1]

Hi. My Mum was diagnosed with vascular Corticobasal Syndrome a couple of years ago after becoming a little confused and a number of falls. She had a rapid decline to the point of not being able to communicate, walk or transfer without support and is also now on a level 5 minced diet due to swallow issues. She cannot do anything for herself and needs 24/7 care. She has managed to keep walking within her home, very short distances throughout the day with the support of a walking aid and 2 people (one in front of the walking aid and one behind her). However, of late this has become very difficult - my question is has anyone been in a similar situation and had any improvement from any meds or other interventions? She did not respond well to Baclofen previously and we have tried to introduce Gabapentin for a therapeutic benefit but again even increasing from 100 mg to 200mg was too much for her to tolerate making it unsafe to transfer or feed her. Also, her neurologist does not want to provide Botox to her legs as feels that the risk outweighs the benefit as it could knock her off her feet both for walking and transferring. I wondered whether it would be possible to try and increase either her low doses of diazepam or cocareldopa to see if this helps in any way. Any thoughts would be appreciated. Thank you 😊

[AnneandChris]

Hello there

I'm so sorry to read this.

Sadly there comes a time with both PSP and CBD where mobility becomes nigh on impossible. It is the natural progression, what it says on the tin! We got to this position and my late husband was moved round the home either in his wheelchair or on one of the two commodes provided by the NHS. Another piece of kit they provided was a Sara Steady which was invaluable getting him from sitting in his armchair, for example into his wheelchair or again moving him from A to B.

I hope this helps, please talk to your physio who, I'm sure, will be both helpful and reassuring

Keep on keeping on

Anne

[Milocorn1 in reply to AnneandChris]

Hi Anne.

Sadly you are so very right about battling this hideous degenerative condition.

I just want to ensure that I’ve explored as many options as possible to preserve what walking ability Mum still currently has for as long as possible - albeit realistically, it’s likely to be in vain.

It always feels like such a fine balance considering the pros and cons of meds and interventions when it’s a loved one’s best interest at stake.

I just wish my Mum had the capacity and ability to communicate her thoughts and feelings in a way that could help with making informed decisions.

There’s no choice but to keep going, taking each day as it comes - the good, the bad and anything in between and trying to make each day count.

I’m so very sorry that your husband also had this and that you both have had to experience this journey too. Much love. xx

[Kelmisty]

Hi,

No one has suggested anything that will help my Mum keep moving, she has PSP and CBD. Currently still in her own flat at an extra care building but her falls are more regular and more severe at times. Not sure how much longer this can be. Mum said she can’t feel her leg a lot of the time, and it give way, resulting is falling.

I wish there was something. X

[Milocorn1 in reply to Kelmisty]

Hi

I’m sorry that your Mum has to deal with this and my heart goes out to you too as I understand completely how very distressing it is to watch your Mum face so many challenges. Falls and the knock on effect was always a huge worry for me too and hard to manage even when I was with Mum. I’m guessing that your Mum has all of the falls support/provisions in place which do provide some peace of mind but aren’t always preventative.

My mum hasn’t been able to get up from her chair/bed without support for a while now - bitter, sweet as whilst yet another part of her independence was stripped away from her it did reduce the falls risk that came with it. She has only been free of falls since any walking she does is with the support of a walking aid and two people (one in front of her and one behind).

Sending much love to you and your Mum. xx

[Sun-flowerwearer]

Hi

Unfortunately loss of mobility is inevitable with PSP/CBD as the disease progresses. No medicine can stop the progression.

My husband was able to walk unaided reasonably well until mid September 2023 when he ended up in hospital with a UTI. He lost his ability to walk unaided on that day. 9 days later he was brought home in an ambulance on a stretcher to a hospital bed the NHS had installed in our lounge as I wanted him with me at home. A fabulous Community OT and physio came to see him two or three times a week for 2 months trying to get him mobile through exercise but had no success.

He has a Sara Steady supplied by the NHS for transfers between bed and chair or toilet. It’s a wonderful piece of kit but needs a carer to push it between A and B and help him into and out of it. He cannot stand up on his own or balance for even a second although the lack of impulse control means he tries to often and falls. He needs someone with him 24/7 now. He is 64 in April and it breaks my heart. No magic wands out there will change things x

[Milocorn1 in reply to Sun-flowerwearer]

Hi

Thanks for your reply.

The Sara Steady is still an option to explore especially if it will help with supporting Mum being able to weight bear for as long as possible. We currently use a MiniLift 125 stand aid for when Mum is transferred with the support of one person throughout the day and night - this too has been invaluable. She also has a great neuro physio, definitely worth his weight in gold.

Sorry that you and your husband are also going through this. I feel your heartache and although non existent, I can’t tell you how much I’ve wished for that magic flipping wand!

Much love to you and your husband. xx

[messier]

She has done well with CBD to keep being able to walk this long. My mum lost the ability to walk very early on. That and the nocturia meant she had to move into a nursing home because she needed to be helped to the toilet several times a night. Sorry but there is nothing that will help other than a series of mobility aids from Sara Stedy then to belt lift then to hoist. Please get OT help. One of the key problems with CBD is that their ability to hold on to aids is affected by the one-sided hand/arm contraction.

[Milocorn1 in reply to messier]

Hi

Thanks for your reply.

We already have all the equipment in place that we need via the OT and fairly regular visits with Mum’s neuro physio who has also invested time showing us how best to massage Mum, specifically hands and legs both manually and with a massager I bought on his recommendation. Whilst her neurologist wasn’t initially keen to provide Botox to her hand or leg he has since administered some to her lower arm to enable her wrist to regain some flexibility in the hope that it may support her (weaker hand) grip and improve her transfers.

Sorry that your Mum has this too - sending love to you both xx

[Atomic55]

hello. I think a lot of people have said what I would’ve said here is that this is the progression of the disease. The medications are most effective in the earlier stages to reduce the speed at which ability is reduced. I noticed some else mentioned physiotherapy which may not increase mobility, but I do think that massage whether that’s through Philip physiotherapy through small movements will ease some of the tension and some of the pain that comes with the contraction of the muscles.

My husband was eventually given morphine stickers to put on his neck, which made him very sleepy, but I think managed the pain, but none of us carers want people to sleep much of the day, but we have to be aware that the person that we love should not be in pain. It’s a hugely difficult balance.

A huge risk for anyone aging and falling because this could mean hospital visits and potential complications which could be catastrophic.

I think excepting the limited mobility with my husband. It meant Hospital bed in the living room, but I still moved him around the house and took him up to bed every night And took him out on drives in our wheelchair car because I know that these things despite is inability to tell me were incredibly important for him and for me.

It’s a very very difficult journey and we are our programs to care for somebody to make them healthy to bring them back from an illness, but the illness doesn’t respond to that. I would aim for the least amount of pain and pain management (you can get liquid paracetamol prescribed), as much mental stimulation as as you have time for, gentle massage of the legs and arms, nicely, flavoured, cold drinks, like smoothies, and as much flavour in the food as possible. I found it very therapeutic (for both of us) to wash and dress him every day shaved teeth brushed, everything. For washing, I used a liquid hair wash which you can get from Amazon and a body wash in a bottle again from Amazon, and all you need is to towel dry afterwards.

I wish you the very best with your journey. xx

[Milocorn1]

Hi

Many thanks for taking the time to reply.

I definitely agree with everything you’ve said and sadly I do very reluctantly have to accept that Mum has no choice but to continuously face the many challenges of such a cruel degenerative condition. Whilst being mindful of this I still desperately want to ensure no stone is left unturned in terms of any interventions providing any opportunities to delay progression or even to just help with trying to maintain some kind of quality of life - I would hate to miss something that could help her in any small way, although realistically I don’t deny at this point I may well be clutching at straws.

Mum has always responded well to routine, lots of reassurance and especially the continuity of the familiar faces who support her. She too, has a shower every morning, gets dressed and has regular visits from her hairdresser as well as daily massages.

Despite being on a level 5 diet she still very much enjoys a variety of meals and a fresh smoothie. Luckily, she’s still able to tolerate thin liquids so has a selection of hot and cold drinks and uses a special cup ordered via her SALT nurse that has different lids to allow either a 5ml or 10 ml amount of fluid to release per sip - another invaluable aid that has helped immensely with her swallowing issues.

I try to take her out in her wheelchair as often as possible, health, weather and (depending on where we go) wheelchair accessible transport permitting. She also still seems to enjoy watching her favourite tv programmes and listening to music and loves a visit from my dog. To hear her laugh or catch one of her rare but very precious smiles fills my heart. It’s the small wins that keep us going …

I’m so sorry that you and your husband have to go through this journey too. Sending you much love. xx

[Perrywrinkle]

I agree with Anne's reply. My late husband was diagnosed with cbd in 2018 and passed away in September of 2023. He was given regular injections of botox in his left arm for painful muscle contractions and clawing of his hand. We thought it helped in the beginning, but after a few years we decided to discontinue. I can't conceive of it helping your mum to walk. My husband also lost his ability to walk or stand alone. The things that made life easier for both he and I were his electric lift chair, the Sara Steady and hospice, all of which helped to enable me to keep him at home until the end. Because of hospice his passing was peaceful and without pain and I am forever thankful for that. After almost 60 years of him being at the center of my life, words can't express how much I miss him.

I'm so sorry for what you're going through with your mum but bless your heart for trying to help her.

[Milocorn1 in reply to Perrywrinkle]

Hi

Thanks for your reply.

Yes, the daily challenges would definitely be more of a struggle without some of the fantastic equipment we have in place. I also found it a great help in the early stages of Mum’s diagnosis to liaise with the OT and our Local Authority regarding timely adaptions to mum’s home - a new wet room and door frames widened, both of which have made life a lot easier from a practical point of view.

I’m so sorry to hear that your husband also had CBD and of his passing. Sending you warm wishes and lots of love. xx