Advice needed please

Afternoon all, I got taken into hospital following problems walking being completely off balance and shuffling to stop myself falling. An mri showed I’d had a stroke approx 6 weeks previous. The neurologist advised this has left me with cerebellar syndrome. I was released a week later with medication and exercises and that is it. I’ve had no further support from the medical community and only found out I wasn’t allowed to drive for a month courtesy of google!! I’m very tearful and still really struggling with my walking and balance and don’t know what to do regarding work and life in general. I have a phone appt with gp on Thursday only because I pushed for this. Any help or advice would be much appreciated.
Ps I hope I’m using this right🙏🏻 thank you jacqui

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When I had noticed that in September 19th 2014 my godson have asked me why is right leg twisted on backwards i said didn’t know it had my balance thrown off :mobile_phone_off:

This is huge sitback for me have do lots of things different

Thanks for tagging me into this @Loshy

The service I think you’re referring to is called Here For You. They will pair you with another stroke survivor who has had a similar experience. You can then chat with them weekly for eight weeks. As Loraine says, they really are incredible.

I would also suggest giving our Helpline a call, they can help demystify things a bit. They may also be able to help you find support in your area. You can call our Stroke Helpline now 0303 3033 100 or email helpline@stroke.org.uk. They will open again tomorrow morning at 9am.

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@jacquiwalters welcome to the forum but sorry you’ve had cause to join us. You don’t say exactly when you had your stroke but I think it is probably very early days for you yet. Stroke recovery takes a lot of patience & can take lobger than you’d hope.

I’d try not to worry about work yet or general life. Now’s the time to focus on you & getting yourself fitter again. I thought i would ho back to work a month or so after my stroke. It took me 17 months to get back part time.

Push your GP for a referral to someone who can help e.g. physio, stroke team. Hopefully your GP can go through it all with you. Write down your questions so you don’t forget them.

Wishing you all the best.

Ann xx

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Thank you anne. I got admitted on 17 June and they said it had happened approx 6 weeks previous to that. It’s just such a lost and lonely feeling with very little support so really glad to be part of this community that understands and can help with the practical as well as the emotional side of things

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.

Best wishes.

Ann xx

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hi martin here just to say ive just started at headway and there great with amazing support and also you will get to meet others like you and that helps with your recovery and there’s :sunglasses:.
ps ask questions on here and everybody helps :+1: :+1:
martin .

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Thank you that’s so kind xx

Hi Jacqui,

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.

Kind regards

Kusal Das, Stroke Occupational Therapist

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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?

Get yourself a copy of a book called Had a stroke? What now? by Tom Balchin. It’ll help you understand what’s happened and what to expect.

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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

Two of the recent similar posts I’ve done are:
https://forum.mystrokeguide.com/t/struggling-more-at-6-months/35021/2?u=simoninedinburgh

And
https://forum.mystrokeguide.com/t/numbness/34983/5?u=simoninedinburgh.

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

Once again welcome, and take it easy,

Simon
Ps you might find the point here useful for others in your circle
https://forum.mystrokeguide.com/t/40-things-to-know-what-would-you-underline-add-or-delete/35110?u=simoninedinburgh

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

Thank you I’ll have a look on Amazon

You’re welcome

And you’ll work it out as you go along. But you’re right about frustration, new person, 5 miles an hour,

One thing I think is key is to accept you’ve just been transported to a new place and life goes on and make the best of what and where you are now

Look forwards. build on your capabilities not backwards as if life has just become about REcovery
Caio

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Hello Jacqui,

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

ciao, Roland

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Thank you. I’m doing the neuro exercises they’ve given me so just hoping that’s enough to start making some progress

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I’ll back you up @pando
:wink:
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

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@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

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