I am Len's wife and main Carer. Len was a fit elderly man (85) who liked walking, and gardening but had a severe stroke last October which has affected his right side and speech. After the stroke he had to be hoisted into a special chair and only got to using a wheelchair in Beech Hill Rehab unit Sheffield. He could not stand without a return for 4 months after he came home. After 6 months of physio he has now got to the stage where he can walk unsteadily with a quad stick. He has had four falls which upset both of us. The main cause of frustration for him is the really bad spasticity in his right hand. Loads of exercises and physio, splint etc he is still unable to use this hand. It was suggested by the stroke consultant that he could have Botox injections, but the physio advised against this. Is there anyone who has had experience of this and has had a result.
Margaret (for Len)
I hope someoe can advise you, but I dont have the experience. What I do know is that it is never too late to get recovery. Things will improve. I wish you well and do say hello to Len from me.
Hello Len's wife, I have now had four sessions of Botox injections around my shoulder area to help me to use my arm functionally. Perhaps the physio thinks it may be too early since your husband's stroke to have Botox, I don't know. Botox injections weaken the muscles and alongside much physio afterwards may enable greater a range of movement.
When you have the injections you are asked many questions to help the consultant to decide which muscles to target and ultrasound is used to ensure the injection is placed in exactly the right place.
For some people it works and enables greater movement but the effect lasts about three months and then further injections.
I hope this information helps you to ask further questions of the enablement team.
Thank you Colin for your response to our request for any help regarding Botox injections. Said Hello to Len for you.
It is his birthday today he is 86.
Margaret and Len
Hi Stroke Survivor in Coleshill. Thank you for relating your experience of Botox injections.
I hope we get some further advice when he starts .the Neuro clinic. It seems to worry Len that he is not getting any feeling back as yet.
I hope you continue to improve. I think only People who have suffered a severe stroke know how hard it is to keep working towards the best recovery they can reach.
Len's wife and Carer (Margaret
Hi Margaret, I am 3 years post stroke (age 59) and have no use of my left arm and hand. I had my first botox injection when I was in rehab. Unfortunately as yet, there has been only a very slight improvement. Botox is a very specialist treatment and appointments are hard to come by. My neuro physio is a believer in botox but says that unless you have regular injections (every 3-4 months)It's not very beneficial. The injections should also be accompanied by lots of stretching exercises, immediately following the injection, in order to get the botox circulating and to maintain a good range of movement.
My last injection was in November last year and I have no idea when my next injection will be. In the meantime, I do regular stretching exercises in the hope that one day things will improve.
Thank you Susan for your response to my message. I am so sorry that you have been suffering for 3 years.Len worries so much about his right hand as it can be very curled up one minute and then softens a bit at other times.
Obviously I just want to help him get some use back in that hand and wondered how long if ever it would be before it came back.
You are a lot younger than Len and we should not grumble as there are a lot of people worse off, but it is nice to hear from others and their experiences.
Thank you so much for taking the time to reply.
All very best wishes for the future. Hope it is kind to you.
Hi Margaret, yes my left hand is the same, tight one minute and soft the next. It gets tighter when I'm cold or if I feel nervous or anxious, which is most of the time really !! Apparently muscle tone can change over time. It's a hard battle to regain movement in your affected limbs but I will never give up trying to achieve some functional movement, although at times I do feel down and angry at the situation and it's difficult to stay motivated when the results are very minimal.
Yes, you are right it does take a long time and progress is slow. I don't think you should tell Len, but it took 8 months before I could move my fingers! Although it might give him hope that things can get better.
I am sure the rehab team will be very helpful and provide sound advice about exercises and other things.
I know it must be hard to keep positive. My husband keep saying that it will get better and I don't want him to give up on it. Perhaps when he attends the Neuro clinic they can suggest something. He does the exercises every day on it. His hand seems to of the most concern to him.
You sound to be very positive so thanks for that.
Are you walking at all. Len is walking with a quad stick but very slowly and unsteady. My nerves are shattered watching him struggle. Have you anybody to support you.
Best Wishes Margaret
Hi Margaret, yes I am walking with a stick and the help of either an FES machine (functional electronic stimulation), I also use an AFO (artificial foot orthotic). I feel like the bionic woman at times.
Yes I have an amazing support network . My husband gave up work to help me when I was discharged from Hospital. I also have 3 grown up children, who live locally and help out when they can.
I know I'm very fortunate but I also feel very guilty that this has impacted on all of their lives.
Good Morning Sue
I know how you feel about the impact that a severe stroke has on your life. I am having to do all the jobs now whilst we used to share them. Len's only hobby was his gardening so I have tried to do some so he has an interest when we can get him out into a wheelchair. I have got tomato plants in the greenhouse as they were always his pride and joy. Beans, peas, carrots and beetroot I have got in the veg garden. Not sure what they will do though.
Len has a ankle brace as he has a dropped foot and a splint for his hand.
We have a son who lives quite near by but of course he cannot help with the care of his Dad at present because of COVID 19.
We have 2 wide shallow steps at the back and with the Physio's help I am now able to get him down them and into the wheelchair. Of course the weather has changed now.
We have been informed we qualify for a grant for a ramp etc but everything is on hold and I have been told that there is at least 40 people waiting before us!!
Never mind keep smiling Sue. You have got someone here who understands what you are and have been going through.
Hi Sue. Sorry I have not been in touch lately but it has been a stressful week. The shower in the downstairs shower room developed a leak and it's a long story but we finally got it replaced yesterday. It only takes one thing to go wrong and It seems to affect me badly as I am the one to sort everything out.
what I would like to ask you is Have you got a motorised chair with one control. I am thinking of getting Len a demo and thought about you as you have the same arm and hand like Len that has spasticity. A scooter would be of no use to him with not being in control with both hands. He could not grip with his right hand and his arm would just drop.
Don't want to be a nuisance but would appreciate your experience of getting around outside.
I have a powered wheelchair, Right hand control but the control can go on either side.
Points to consider:
Is there level access into the house, if not where do you store and charge the chair.
It is harder to navigate kerbs in a powerchair. I spend a lot of time looking for dropped kerbs.
Is your car big enough to take the chair. You will have to get a hoist or ramp to load the chair into the car.
Are you claiming PIP for Len? If you are you can use the money to get a suitable car.
If you do get a wheelchair get proper advice. A chair that is the wrong size will be very uncomfortable.
!e.g. me know if you have any questions.
Thank you for your response to my query about power chairs. My husband's only interest/hobby is his garden and greenhouse. We are waiting for a ramp to be fitted!!!Covid19 has put the brakes on that, but I can get him down 2 shallow steps with the utmost care as his walking is not good. I want him to be able to go around the garden paths independently and eventually have raised beds for him to attend to. We would probably get to shops etc with community transport. I am waiting to hear from them if they would accommodate a power chair. I cannot push him in a wheelchair. I am 84!
Until we get the ramp I have a shed to store it in. I was just hoping someone could let me know if they are happy with theirs. I was thinking of trying out a model called Jazz.
Hi Margaret (for Len), I had my stroke in April 2017. My right side was affected. Vision loss, right arm (I lost my ability to use it and write), right leg (spasticity and drop foot). I tend to forget some names and words. I saw my stroke consultant afterwards, after spending 6 weeks in hospital, from mid 2017 until mid 2019. In that time he gave me 3 botox injections in my right leg. It did help. The spasticity of my right leg lessen considerably. It is worth the try. Len will not lose anything. I am sure the consultant will not recommend its use if there is no chance that it will help. With my best wishes.
I am very happy with my chair which is an Otto Bock. Do you have power in the shed?
Thank you for your reply to our query regarding spasticity.
Yes Len has just got all the problems you experienced, but the stiffness and loss of use in his right arm and hand worries him the most. I will read your message to him and I am sure it will give him some hope. The stroke consultant is going to phone him as a hospital appointment on Thursday so we will see what comes of that. I would rather he saw him but it is because of COVID 19 they are phoning instead.
I hope you are doing better now. Severe strokes are horrible things and only those who experience them can understand. He has a friend who thinks it is just a matter of exercising the muscles!!
Margaret (for Len)
No but we can run a cable to a nearby outside power point.
I have had a scooter for a long time as I cannot walk far because of heart problems so we are used to doing this.
Never heard of that make. Are you happy with it?
Hi Janet. Just looked up the Otto Bock. Were you referred for an assessment by the NHS and have you got a front wheel drive or back. Sorry to ask so many questions.