It’s very early days for you then. Time for you to concentrate on getting yourself better. I hadca different type of stroke to yoy but my balance was all over the place and it took lots of exercises to get it somewhere bear right. It’s still bad at times but I guess i’ve adapted to it. Insist on getting some help from your GP. It doesn’t seem right that they’ve just sent you off with no follow up.
Plenty of people on here will be able to offer advice & support so if you have any questions ask away.
Do ring the Stroke Association helpline & you could also try somewhere like Headway or Brain & Spine Foundation.
Sorry to hear your story- I work in a community stroke team (NHS) and we visit clients daily. It sounds like where you live you do not have a team like ours. You really need physio to start on balance programme to get better. I am not sure whether you have limb weakness or balance problem only. Please request your GP to refer you to community rehab services and please contact the service to find out waiting time. Some services have months of waiting time, which is no good to you. It is a bit postcode lottery, I am afraid. If there is long waiting time, please consider exploring private route. I have met around 1200 stroke survivors, it sounds like if you receive the right support you are likely to make a good recovery, however, because I am relying on your description I may not be accurate.
Wishing you all the best.
If you have any further questions please do not hestiate to contact me through this post.
Please note that your condition may be similar to vestibular syndorime, where you would feel dizzy on turning your head or on standing up from sitting.
Hi kusal you sound exactly what I need. I have balance issues which is causing lower limb weakness. I got released from hospital with no back up plan. Ive even had to fight for gp follow up. Thank you for your message and when they finally call me I’ll mention this. If you can think of any other suggestions that may help with my recovery id appreciate. Would defo go private if I can afford it no idea how much that kind of thing would cost I just want to get stronger and better. I live in Bexley so maybe you would know if we have a stroke team?
Hi @jacquiwalters
Welcome to the best club in town that doesn’t have a waiting list of people applying
You’re at the beginning of a very long journey. Also a journey whose progress is normally measured in years and quarters not days and weeks. Although having said that you may not be typical. I too would appear from what the medics have said to have had Silent Strokes before eventually I was hospitalised BUT similarities with one person are pretty meaningless. Similarities with the experience of the group can rapidly add up to giving you enough context to start interpreting your specific situation.
The comments above have already told you a lot of what you need to know like watch out for the fatigue expect random changes throughout the journey etc
I’ve done a few posts replying to people in various shades of your situation and there are many many other posts on this forum from the others present here. Reading through the threads will start to give you context from which youll then be able to search for topics that relate to your questions and then you’ll be able to frame questions that are specific and the community here is very supportive and will step up and share the best of their knowledge.
Of course the brain is complex so a randomly located incident of damage to it plus a difference in personalities of people mean huge complexity in establishing cause and effect or likely outcomes and time scales. I found the medical profession won’t answer questions with any useful prediction which makes this forum un-usually value ful because what we lack in book learning we more than make up for with lived experience and relating it in everyday language
I’m also a “Here for you” volunteer that @AshleyTH & @Loshy mentioned. Here for you covers two services: Live experience and Connect and chat. I’m not convinced there’s actually a difference but I suggest that lived experience is probably what you’re after and I suggest that 8 weeks of 30 minute calls is useful in combination with 30 minutes of reading my stroke guide a day.
There are hundreds of support groups throughout the country and the world and are listed lots in another post that is here
As well as the stroke association support line and in my opinion somewhat confusing website that’s also cool nice my stroke guide put is different from this my stroke guide which is the forum there is different strokes who have a helpline website and a Facebook group with lots of compassionate stroke warriors within it You also find communities on Instagram Reddit etc
Also bear in mind that while a stroke hits one person’s brain it affects everybody that they’re in a relationship with and those people need support too because their world is just being turned upside down to greater or lesser degrees. It’s quite possible that has you’re potentially a different person now they’ll have to adjust and you may have care needs that will become clearer over the time scales mentioned in the two posts up above .
This is a place where people understand, you can rant, cry, celebrate, or release any of the other emotions so they’re not pent up inside
Hi Simon your comments are amazing thank you and yours and others comments have made me feel not so alone and really appreciate them. I’ve signed up for here for you yesterday as just want to get as much info as possible.
Guessing like most people the frustration is difficult to deal with. I was a 100 miles an hour person now I’m lucky to do 5! I guess it’s just trying to get used to the new version of yourself and accepting this.
Thank you again for replying and I’ll defo look at your other links. As you say no 2 peoples journeys are the sane but it’s good to read others experiences as each have a little of what you need. Jacqui x
I wanted to wish you good luck.
I hope others can back me up on this, but you can expect steady progress after a stroke… it might be slow progress, but there will be a general trend towards improvement
I’ll back you up @pando
but with the one important, nay critical proviso: that progress follows effort, effort at least in the short term does not guarantee progress but lack of effort guarantees lack of progress
@jacquiwalters welcome to the forum, you have been given plenty of good advice. it is still early days yet 2 and 1/2 years post stroke still my body achieves new things. i have stopped worrying about aches and pains, its just your brain connection to the nerves again. its rewiring itself. when you speak with your gp ask to be put in contact with the practice social prescriber, they can help with financial matters grants support groups etc. i found them useful, also get gp to see you face to face as well then get a referral to physio local councils have physio teams who visit you at home, I’ve used them around 4 times now good luck Jacqui
Hi @jacquiwalters and welcome to the stroke forum. As you can see we are all a very helpful bunch of stroke survivors with a mine of information and clearly the best place for you going into this blindly. It actually astounds me that you have been given absolutely no follow up aftercare in place with your regional stroke team.
Though I’ve never had to this for myself, you can refer yourself to your local/region stroke team (I say “team” as that is what they’re referred here). It’s just a matter googling them to find their contact details, same goes for physio. Keep your hospital notes handy for when you do call them as that will have all the relevant details they’ll ask of you.
It’s going to take your brain at least 6mths to get back online and it take a lot out of you, drains your battery, so always keep your fuel topped with a good nutritional diet . Your walk and balance problems should right themselves in that time too, certainly you should get back at least 90% of your gait (your walk) and balance.
I’ve got some short youtube clips to I’m going to post on the forum, 2 are to strengthen your core muscles, and 2 for balance. They’re just favourites of mine because I like to switch things around a bit, verity being the spice of life Anyway, I’ll tag you into them when I’m done as I think they will help you.
Thank you I’ve just been looking at this videos and they are very good. Do you know if this will help with the neuro balance as well please? That’s where my balance issues appear to be stemming from. Tom is very easy and fun to watch
And that’s where most stroke survivors balance issues stem from. As your brain heals and recovers so to will your balance. There’s a lot of brain retraining going on inside your head even as it’s recovering just now. And a biggest portion of stroke recovery comes from repetition to solidify those things our brain’s have relearnt. So yes, daily balance exercises will help with that.
I like a Tom’s stuff because he is lively and down to earth…and I love his accent
If long waiting time, private neuro physio’s can be found on Chartered Society of Phsyiotherapists (CSP) directory, the charges vary between £70-100+/hour, I know this is lot of monye but recovery happens best in the initial phase, hence, it is worth thinking about this route- please make sure you are looking for neuro physio.
Support video’s are good, but the challenges are your symptoms can have multiple cause - finding out the cause is absolutely important - that is where the professional help matters. The balance issues are likely to be secondary to limb weakness, are you feeling dizzy? How is your lying and standing BP? Any difference?
How is your leg coordination? A multitude factors can be here? You can follow a programme, but the question is that going to treat the cause?
If it is only coordination issue and if you are walking unaided- I would guess the chances are that you will have a good recovery, but again this is only a guess. Most of our clients recover within 6 weeks.
In summary, my advice is to find out what is the effect of stroke and then look for treatments. There is no guide that would give you information to DIY- that is the nature of stroke, it is very predictable but it is very difficult for me to say anything without an visual guidance. The forum rules are somewhat limiting, but I am trying my best ot guide you within the limitatons.
Thank you appreciate your help.
It’s a strange one when I’m walking I suddenly feel like I’m slipping on a banana skin and my arms flail about but my feet don’t actually move so it’s in my head.
I’ll keep working hard with mind and physical exercises and hope to get a referral in the meantime
The cerebellar is responsible for adjusting our posture to maintain balance. It basically puts input from all senses together, and tells muscle how to adjust our posture. If this function is not working then as you move (normally our body adjusts our posture constantly to maintain stability) the body cannot adjust posture as required leading to loss of balance. Although the cerebellum accounts for approximately 10% of the brain’s volume, it contains over 50% of the total number of neurons in the brain, so you can guess that it plays a big role in coordination. The arms swing when we walk, but if you do not have coordinatiion of the arm then it gets harder to maintain balance. In addition, the feeling of banana makes me think that your senses are not quite processing the information it is getting. Are you getting any double vision?
I would suggest try walking bare foot, try to rub your feet on a rug or dip your feet in cold/lukewarm water (alternatively), if any one massage the foot this would improve circulation and sensory processing. The other factor to consider, if you are putting weight on both feet equally- if they are uneven actually physical exercises needs to be carried out with caution to make sure that stroke symptoms don’t increase. Rub your hand with fabrics with different texture as well. The Sesne programme that has been stated in other posts could be useful - one way put differnet objects in fornt of you and close your eye, see if you can differentiate between various objects?
These are some of things worth trying, I hope that this helps.
Sorry, forgot to talk about emotional aspect. Along with controling motor (muscle) function, this part of the brain also control emotional aspects. So it is quite common to be tearful, but normally this improves with time. Although, I must state everyone is affected slightly differently.
Anyway, I’ll tag you into them when I’m done as I think they will help you.