Hi Lizzy,
Yes I agree surely they can’t leave him like that. He is lucky you are watching over everything. It sounds like u have a good team so I hope no problems do please keep saying how things go.
My past experience caring for my wife is that at times you have to battle for the right outcome so u do right monitoring how things progress and when needed nagging for this.
Thanks for posting all your experiences now are a help to others too I’d say.
1 Like
My youngest son is exercise for exercise sake adverse as I am too, but you have many options for exploring movement activities he might like. Probably his least favourite would be housework but I did housework after stroke and it helped me immensely throughout my rehabilitation, and I find it cathartic too. Especially hoovering and ironing, these are my favourites. Movement routines can be assimilated into everyday activities like watering indoor plants and putting away dishes. I know it doesn’t sound like much but it is what some people call easy exercise, and it does have its benefits.
On another level, there are many fun combat and boxing games on the PlayStation as well as standard dance and yoga style games. Some of these require a VR headset, so there is a bit of a cost involved. The more entertaining games, in my mind, require a VR headset. So a bit like the Wii, it gets kids up and moving and gives them a workout while doing what they like.
Another option may be finding a kickboxing or karate class suitable for the disabled. My local karate teacher is blind and she welcomes people of all ages and conditions into her classes.
Finally, there are casual sports like backyard tennis or ping pong, or even swing ball which can make movement fun but also allows it to be done at one’s own level without competitive pressure.
Anyhow, just some ideas to throw your way.
2 Likes
Thank you for your useful replies.
I think that’s a great idea with housework especially when it comes to gleaming his own room and the swing hall is a great idea got arm exercises.
To be honest I am starting to feel because my son has made such good progress by himself as each day goes on I really do think he is going to end up getting no help at all and having to do it all himself to recover so any ideas will be greatly appreciated.
Today he had a shower stool turn up from Medequip as when he was discharged he did need one but now he is showering standing again but said the chair will be useful to keep his shower gel and shampoo on to save risking bending to pick it up.
I really have no experience with strokes at all and maybe it is because he is so young that each day he is progressing but even so I do hope he gets some help to build his strength up.
2 Likes
It’s great that your son is doing so well. His age probably helps but he still has to want it which he clearly does.
Push for the help you think he needs. He does need to build his strength up & they can definitely help with that. Tell them that. Don’t be afraid to speak out.
He is doing great though & i am sure he’ll continue to do so.
2 Likes
Thank you. I am going to sit in with him on the call from the neuro team as it does state on their website to have someone sit in on your assessment call. We are going to write a list of points we want to discuss and how his main focus is to get fit enough to go back to work.
3 Likes
This is such a nice post to read. So much has happened in such a [relatively] short period of time.
I thought it would be nice to join this conversation because I too was very young when I had my stroke - I was 21 years short of my hundredth birthday!! Ok, so in reality regressing into childhood as you get older might not count as being young, but why not?
For me this is interesting inasmuch as it allows me to compare and contrast with my experiences as a stroke survivor.
It seems to be, the younger you are the better your chances of recovery from the stroke. This is based on observations and using my own thinking and logic on life and all it entails. Being young, in this situation offers greater opportunities in many ways; the element of being young and energetic, much to live for and so on. In addition, the system does not see you as “of no further use” and so will work hard to get you back on track so you can start paying your taxes etc. Yes, it is that brutal. The system will work hard to make sure you can get back to work and support yourself and so you will be offered greater support in terms of rehab and all the other things that may help. At the other end of the scale, as I was, they see no point in “investing” in me and others in a similar situation and so they will do as little as they can get away with whilst trying to get you to give up your bed [hospital] so they can give it to another patient. Once you’re off their books you’re off their radar and then it’s “good luck to you!”
I am not bitter - this is life after all. But I am a realist and I have seen much and which leaves me scratching my head as to what might be done to fix this that is broken, which clearly it is.
I seem to have lost focus on what I intended to say and perhaps I should stop for now as I don’t want to depress anyone reading this.
Just to offer some words of wisdom if I may.
-
Your son is young and he will be “top of the list” for any help that is available for reasons mentioned above, but do not assume it will be offered. You may still have to ask for it as nothing will ever be offered if they can get away with not offering it - that’s how the system works.
-
Do not feel rushed into making decisions - be prepared for all meetings and sessions you have with the healthcare, social services, employers etc. Take notes, keep a diary.
-
Don’t assume they know what they are talking about - you know better than they do (your son) - it’s your body and you must listen to it. Watch out for deviations from the norm, especially when taking medications as they can have side effects
-
Post-stroke, physio is one of the most important things to aid recovery and it is important to take full advantage of this. The more the better. In general, physical activity is always a good thing and if your son is not keen on this, you should sit down with him and give him some advice. He really should think about this and he must become more physically active - he may not like it, but he will thank you for it in the long run.
-
One last piece of advice which I must mention and that is to say, try to to get carried away with the success to date. It’s wonderful the progress that has been made and in some ways not surprising for reasons alluded to earlier, but “too much too soon” is a phrase worth remembering. Take time to breathe - your son must take necessary breaks to allows his brain and body to refresh. Each day he must dedicate time to rest and recuperation periods. Also, watch the diet. If taking medications, make sure they are not adversely affecting his body and mind.
There’s no fool like an old fool. I may be old, and I may be a fool but you could do worse than listen to what I, and indeed others may have to say, especially those who take time to respond to your posts.
May I take this hopportunity to wish you and your son all the very best. I hope your son realises what a lovely Mum has has!
Take care, peace and love to all.
3 Likes
Thats a tough one for you to have to face. I’m having similar problems at home with my wife who had an uncomfortable fall some weeks ago. The brain bleed was overlooked because she swore all was well with her. I’ve since discovered that that is not uncommon with brain damage, where the recipient insist all is well with them.
Even now in recovery mode I have to keep an eye on her activities and warn her to have ‘Brain Rest’ when I see she is more tired than she wants to admit. This is espescially when we are being visited by her equally chatty friends. I have spoken to most of them on the quiet and asked them to be aware when to say goodbye!
She hates to see people leave and will make any excuse to delay it happening.
Deigh
1 Like
I think what you’ll probably find is that being fit enough to go back to work won’t so much be physical impairments, but cognitive fatigue which can outlast the seen condition. It’s almost vital, per the medical theory, to allow the brain at least six months of spontaneous repair to avoid the boom-bust cycle which can make future progress even more challenging than the initial symptoms.
1 Like
I would echo what @Rups has said. I returned to work & the cognitive fatigue was really hard & overwhelming. Slow & steady return is my advice.
3 Likes
I love this reply and I totally agree with you when you compare how the elderly who have a stroke compared to the younger generation are treated. I witnessed this during my son’s stay in hospital.
Also agree with you on the need to sit my son down and have a good chat about exercise and how important it is for his recovery. Our very kind neighbours have offered us their treadmill which will be a great help and we ourselves have an exercise bike. Something to start with as I have mentioned he hates the idea of going to a gym.
With regards to medication he’s not on any medication at all, I was thinking he would be on all sorts of medication for life but no none at all as it stands.
Thank you so much for your great posts and kind words..
2 Likes
My son’s work have been very supportive throughout the whole of this awful time. It is his first job to start off his career after leaving uni last summer which he only started 6 months ago.
It has already been planned that there is no rush for him to go back and when he does it will be a phase back to work to suit him and for a while it will be Woking from home, he is itching to go back though.
His consultant did say the best thing you can do is go home and recover and get yourself back to work as soon as you are ready and start living your life again.
After the op to remove the AVM he suffered fatigue and slept lots. Even with coming out of hospital last Tuesday just going on short walks was tiring him out. By Friday the walks were becoming longer and the fatigue was shifting and he has been feeling more energetic. Sometimes I do wonder if we have got so used of the phase…. Don’t push yourself too hard too soon but maybe sometimes that is what can hold you back and challenging yourself helps recovery. However I am no expert on strokes at all and can only go by how my son is recovering.
3 Likes
Aye, all our brains are wired uniquely and, with shared commonalities, we rehabilitate at our own individual pace. The boom-bust principle is common sense of which I had none at the time of stroke and didn’t follow this principle. So, instead of pacing myself, on good days I went out and cut the grass in the orchard or spent a day chopping wood because I thought I had turned a corner with my rehabilitation, but boy was I wrong. The fatigue that hit afterwards knocked me back for days, so it was a case of one step forward, two steps back because by going hard at it when I felt good meant the brain had less or even no energy for spontaneous repair but also any new pathways it was attempting to make were undermined by it using all its energy in a single shot.
It’s really, simply about pacing oneself. Keep the rehabilitation constant and repetitive but also get into the habit of stopping just before the brain switches off. The analogy I like to use is being stranded in the ocean, the key to staying above water is to gently paddle, rapid swimming tires the body out and through exhaustion you sink, but constant and gentle paddling will keep your head above water for longer. Same principle for swimming to shore, a steady, slow dog paddle will get you there, but if you full belt freestyle it, you will get exhausted and not make dry land.
It’s just something to keep at the back of one’s mind. Each rehabilitation looks different for each stroke survivor, but the one constant seems to be fatigue, even for people who have had a TIA or silent stroke.
2 Likes
This is why having this forum because you guys who are living the journey are the experts on Strokes. One thing I have learnt is that fatigue is one side effect of a stroke that I keep hearing about.
I don’t think there is any danger of my son over doing things because as I have mentioned he hates anything to do with exercise so he will do the minimum. So far today he has done 15 mins are arm strengthening exercises with very light weights and we have been for a walk. The one thing he likes to push himself with is walking a bit further each day. He is climbing the stairs a few times a day which is proving great for his knees. Now he is on his PlayStation which will be for most of the day but he has just spent 6 weeks in hospital so why not.
Thank you for your reply.
4 Likes
Morning everyone,
My son had his over the phone assessment yesterday with the neuro team to find out what rehab he could have. It was a long call with lits of questions. I was in on the call with my son. He answered all the questions honestly and gave details of any issues that he has. I have to say after answering the questions it made me realise kyst how far he has progressed. It also highlighted where he needs help which is mainly gaining strength.
The conclusion was… you have done very well and we do have a 12 week waiting list but we can offer you a once a week fitness class.
My son did point out at this that he would like to get back to work by the beginning of August if possible.
Before he was discharged from the hospital I did say I don’t want him sent home and not getting any form of rehab. That is when they told me they have reffered him to this neuro team who called yesterday and they will come out to the house most days to work with him to get back to work. So what I thought would happen has happened and I find it very hard to believe that a 23 year old can have a stroke and the only help he will get in these first few very important months of recovery is a once a week fitness class.
He does have an appointment with this pyshio who made the call yesterday so she can check him over to make sure he is fit enough to take part in the class. She also said she can see how he is walking etc and give him any advice. So really the only rehab my son has had since his stroke 7 weeks ago is 20 min sessions in the hospital two to three times a week.
I am going to call the hospital OT today to have a word with her about it and see what she thinks. Other than that we are going to do as much as we can ourselves with him. We have started daily exercises including light weights, we take a walk each day aiming to go further each day and today we are going to dust off the exercise bike that we have. We have decided to look into a private pyshio which is disgraceful really that we have to do that but we will do what it takes to get our son back to full strength and go back to living his full life.
2 Likes
Hi @LizzyG that really isn’t great but sadly reflects the state of the NHS at the moment.
The Stroke Association do exercise sessions that he could sign up to. Have a look at these links.
https://www.stroke.org.uk/stroke/support/online-activities
https://www.stroke.org.uk/stroke/life-after/online-stroke-fitness-classes
You may also want to look into Different Strokes Charity who are for younger stroke survivors. They offer thingsthat may help him too.
3 Likes
“You can get physiotherapy for free on the NHS, but there may be a long waiting list.” That’s straight from the NHS page on physiotherapy, so if desired much of what you may have to do might be off your own bat. Once an outpatient, the level of care drops dramatically. I had no physiotherapy offered to me at all, apart from a few emails informing me to check out YouTube videos. Post code lottery and all that. I was thinking that if you have a swimming centre nearby, they might offer classes of what they call aquatic therapy, it’s mainly geared towards the elderly but movement in water is not only splashy fun, but also engages muscle groups and provides natural resistance. Having grown up in a country where backyard pools are almost as common as toilets, it is one thing I miss, getting up in the morning and having a swim or ending the day with a few laps.
There’s no mystique about physio, it really can be done anywhere. Having a trained physio may make it feel official but they can’t assure that what they do will be more effective than what he can do on his own. Getting out that exercise bike is a good idea, cycling is excellent as a cardiovascular workout and for leg strengthening. At his age, I doubt he’ll experience muscle atrophy, if he keeps on moving and doing stuff, but as I mentioned in previous replies, over six months, the brain is in spontaneous repair, and rest is just as beneficial at this stage of the rehabilitation game.
And as @Mrs5K mentions, create a routine using available online resources. I know that some online video groups have exercise sessions, I never joined in because they were mainly done from a sitting position.
3 Likes
Thank you all for your replies and all the useful information I have taken it all on board and it’s great that you can come onto a forum like this one where everyone shared ideas.
Yesterday my son reached one of his goals by attending his girlfriend’s graduation. It was an hour and a half drive which we were able to drive him. Three weeks a go when discussing the graduation we talked about him going in a wheelchair or on crutches, however even the crutches have gone now so he went along as he would’ve if he had not had the stroke walking as normal. He lasted the whole long day with an evening meal. The only problem he has is afyer sitting for a while his back and weak side shoulder starts to hurt. Other than that it was a great social day out for him and it really was a great day.
7 Likes
That’s amazing. So glad the day went well and he was able to enjoy it as originally planned. I bet his girlfriend was thrilled too. I am sure you are very proud of your son and the progress he is making.
3 Likes
Thank you.
It really was a great day and made my day to see my son there on his first social event since his stroke 8 weeks ago.
I am super proud of how far he has come and how he is slowly getting his life back together.
Next goal is getting back to work in August.
3 Likes
I hope he achieves his returning to work goal. Easing in back in gently is the way to go. Hopefully his employer will allow him to do reduced hours for a short period.
3 Likes