Hi I was wondering whether anybody has experienced the same situation. My mum had her stroke 11 weeks ago and has just gone to a care home. We have been told mum is only being offered transitional physio because she isn't fully aware of her left side. I have spoken to the physiotherapist in the hospital and they will not change their decision. My mum moves her legs very well and her arm is coming along very slowly. I feel as if she is just being cast aside.
Dear PJS
The follow up care for us stroke survivors is at best patchy and often non existent. I dont know what is meant by "fully aware of left side".
What I have learnt over the past 35 months is that it is up to us SS to effect our own recovery. No amount of medical care will get us recovery unless we put in a huge effort on our own part. We have to truly want and believe in our own recovery. This isnt rocket science, if our brains have stopped working then we must convince the brain to get working agai. Our amazing brains will indeed respond and rewire as necessary.
Mum needs to wiggle her toes and her fingers. She needs to lift her arms and legs, if she can. Get everything moving. Do remember that there is nothing wrong with the limbs and digits it is "just" the messaging system. For about two years the recovery can be quite straight forward. And it is relevant that we never ever give up.
Mum should learn whatever the transitional physiotherapst can teach her and then do the exercises herself. You can of course cheer her on. Much of the physio is repeatative. I did the exercises then did them twice more. Every day, physio present or not.
I do feel sorry for you if you think she is being cast aside and yes I know exactly what its like when that stage arrives. For me it was at about eight weeks. I felt just as though the cruise ship which I had been travelling upon had lowered me in a rowing boat and left me in the pacific ocean.
Its up to me to grab the oars and start making my way ahead.
Lots of nice people on this forum will give you tips and encouragement.
Mum, please be positive and smile four times a day. Your brain will respond.
best wishes
Colin
Excellent advice, + encouraging words ?
Dear PJS,
What Colin says is absolutely true. As a stroke survivor you need to become your own physio, O.T. etc. Repeating the excercises multiple times truly pays dividends. Some times things happen relatively quickly but most often us S.S's are in it for the long term.
I'm sure with your support your mum will improve. It's always good to prove the experts WRONG! Good luck to you both.
Kay
Hi Colin
My mum can move her legs and her left arm is moving as well but it is very slow progress with that. Although mum can move these she isn't aware of her left side and we are told she doesn't know they are hers and that is why she won't be given any physio to get her walking or sitting unaided.
Patsy
Thanks Kay.
I really hope mum can prove them wrong. Xx
I have so far. I was supposed to be able to stand with a Zimmer frame do a few steps turn around and sit down. 12 weeks after my stroke using a Zimmer frame I walked out of the stroke unit to the car.
I hope your mum can achieve her goals. Set baby steps and go for it! xx
Patsy I've literally just got in from seeing dad at his rehab home. They haven't done anything with him in the gym but have given him excerises to do which I help him with when I visit. Ask the team when you go what would help your mum.
one of my dads was simply rolling playdoe in his hand believe it or not!!!
Thanks Nic. I sometimes fret about "advice" when I am just relating my experiences. So its nice to hear comforting words from a fellow East Anglian.
Got nippy today and I think we have just had a brief hail storm. Cat was alarmed by the noise. He isnt going outside today. Cats are not stupid.
Colin
We could all learn a lot from cats ??
Colin, I have always remembered this advice from your earlier posts. It helped me quite early on and I still keep it in my mind at my exercise classes and in my daily life. My brain still misses its direction occasional, but my weak leg, arm and hand can do more now than I thought they would.
Everything also takes more time, but can be done. I was lucky to have a lot of support in Worcestershire. The key challenge is when support ends.
PJS, do encourage Mum all you can. I move anything on my weak side that I can move. We survivors have to start from square one and just keep working at it. It is a case of try, try and try again.
Thanks for your message. I will check with the transitional physiotherapist if therebis anything we can do. How did your dad get into a rehab home? X
Dear PJS
My Dad had a stoke 12 weeks ago and had no swollow, speech or movement on the right side. His swollow came back quite quickly and his speech is much better, it is just the mobility that is still a challenge. He was very lucky and his stoke unit gave him physio daily and also left exercises for us to help with.
Dad has now been home a week and we have managed to get an 'Early Discharge Team' involved who come in daily for physio, OT and speech therapy. He also has rehab carers in 4 times a day who have exercises to do with him also. The team are amazing and being home for him with my Mum was definatly the right decision. We really pushed for everything, we felt that the louder we shouted the more attention we got. Please try and speak to your physios because if they feel your Mum has a supportive family they may be more willing to help!!
Good luck, it is hard being a carer but these SS are a tough bunch!!
Sarah
We live in the north west, so very lucky to have salford within 30min away which is one of the top stroke and head injuries hospitals. He was in there for 10 days before being transferred to local hospital for a week. It was whilist he was in here, the rehab home was offered as they had some beds available. There isn't enough staff as nhs run however he has his own room tv so got some independence. Going in shortly to see him as been back in work today. X
It’s lovely to hear how you are helping your dad. John was given a plastic ball, like play dough, by the OT. She also brought a range of small pieces for him to move from one dish into another. She suggested he use dried beans, grains of rice, small pebbles etc to stimulate fine motor skills. We also bought wordsearches to encourage eye movement, especially because he had/has left neglect. A friend brought him pictures by numbers which I took to the library to increase from A4 to A3. She also bought an Origami pack from The Works. (Even I struggled with that though). When our grandchildren came to visit, we got the Lego out. It’s an excellent thing to use but,,,, John would only use it when they came. They live in Devon and we live in Durham,,, enough said. However, he is improving and I’m sure you’ll see Dad take little steps of progress, too.
Take care of yourself, though. It is an exhausting situation for carers, as well as SS.
I agree with Nic. Since I started reading the posts out to John, he has certainly responded positively. However, I have benefited, too, as I am much calmer and more accepting of my ‘new husband ‘ . He’s a star! Thank you Colin and JJM, too, of course.
Likewise look after yourself, having a night off today to soaps and g&t planned!!! Been to see Dad this afternoon he has a gadget now around his ankle to assist walking seems to be assisting x