Hi there I just registered an hour ago and thought I’m give the stroke community group a go after being involved with the stroke community on Instagram since last April.
I am 44 years old and had an ischaemic stroke in September 2020. The stroke came completely out of the blue as I don’t drink that such, I don’t smoke, do drugs. I was exercising - kickboxing and weight training right up to the moment of the stroke, I am not diabetes nor so I have any of the risk factors of a stroke.
The stroke affected the right side of my body. I have aphasia which is getting better now. I had trouble swallowing food for over a year, I lost my long term memories and had emotional lability.
Unfortunately I haven’t been able to deal with the effects of the stroke on my life as I’m had to deal with family dynamics which interfered with my recovery. Things got so bad that my partner who was my primary carer and I had to leave my country and come back to Scotland, where he lives.
All the counselling I’ve been doing so far have to help me manage without my family and create boundaries so they can’t hurt me anymore.
I’m been on autopilot in terms of my recovery, doing the physio, OT and voice coaching. I have made significant progress since the stroke but I think the emotional effects of the stroke are finally catching up with me, especially now that my long term memories are flooding back.
Hoping to meet new people there especially any one living in Edinburgh as the isolation is a challenge.
Hi Joy @joy.alliy and welcome, sorry to hear how tough you’ve had it but I’m sure you’ll find lots of helpful advice and company here.
I have only been posting for the last few days but joined in August (had my stroke at begining of June last year.
I was pretty healthy and active, non smoker, not overweight etc so also didn’t have stroke on my radar at all.
I initially lost the use of my left arm and leg but with physio and lots of effort can now walk and use my hand & arm (with numb foot and hand). However I think it is the unseen effects of stroke that normal people don’t really understand. It can be frustrating when people say how well you are looking when they don’t realise the mental side that doesn’t show can be the hardest to deal with.
I am in the south of England but my wife is half Scottish (does that count ). Good luck with your recovery and hope to “speak” again.
Mark.
Hi @Mahoney thank you for your message. I think having face to face chats or online sessions with other stroke survivors will help me a lot.
The counselling have been mainly about dealing with the African culture. Something I have struggled with for a long time after being educated in England. Perhaps a second round of counselling dealing specifically with the stroke is needed.
Hi @Ingo66 thank you for your message and kind words. I’m glad to hear that you are also going well with your recovery.
The unseen parts of the stroke really are the toughest hurdles to get across. All this time I have been focusing on the physical side, motivating and encouraging others take steps to start physio thinking all is okay with me. Now I feel emotionally drained and people back home keep asking me if I’m well now to go back to work.
I tried to write about the physical and emotional effects on a stroke on Facebook so that people are aware that recovery isn’t that easy. But in the end I had to stop writing. I felt like I was talking to a brick wall. One day…
Hello @Mahoney I agree entirely about the benefits of counselling as long as it’s a trained person who knows how to listen. Loved ones and friends mean well and are by no means rejected but they know the old me and are trying to get parts of me back to what I was. Those parts of me are different and I’m still trying to cope with them.
I still have trouble with balance and walking straight, it’s by no means critical but still a damn nuisance. A couple of months ago I joined a gym, all I do is walk on a treadmill and my balance is improving slowly. This is by no means medical advice for anyone and perhaps I was at a stage where I would have improved anyway but, what the hell, I’ll take what I can get.
Best wishes
Clem.
Hi I too go to a gym and have trouble with balance I use the treadmill and walk better on there but not worried I’ll fall as I hold the handles so look straight ahead instead of at my feet swimming has improved my strength also.
Hello @joy.alliy, can I say ‘snap’. I had an ischaemic cerebellar stroke September 2020. I was 44, now 45. It’s important to factor in that trauma can also be a trigger for stroke (stress, physical injury like pinching of an artery et cetera). My stroke remains cryptogenic (unknown) but I suspect mine might be trauma related. I had a seven inch thrombosis in my arm which I only noticed while navel gazing in hospital, the consultant said that it may be possible that platelets broke off and clustered in the wrong spot, but nothing was conclusive. I had had a pretty manic year that year, fairly stressful and I was doing a furious amount of physical work. I had had six TIAs before the major stroke, so the warning signs were there but a GP misdiagnosed it for BPPV.
I live in Wales. and am part of a wider stroke community here, so you may find similar there. Welcome to the forum and I hope we can offer comfort and advice when needed. It’s a bit of a rollercoaster emotionally, and I counted 37 emotions in Darwin’s book on the subject, so there’s a lot to manage everyday.
Appreciate your post because I sometimes wondered if my balance improvement was wishful thinking. Knowing that someone else is getting benefit from similar exercise is reassuring.
Best wishes
Clem.
My stroke also remains cryptogenic and although my neurologist back home ruled out stress, I believe it did play a huge part.
When the pandemic hit my country in March 2020 I decided to shelter due to my asthma and I warned my 77 year old father and youngest brother who are also asthmatic to be careful. They wouldn’t listen despite my attempts so I had to deliver masks to them once at 10pm. I was incredibly anxious but my family didn’t take me seriously. The government back home downplayed covid because they didn’t want to have a lockdown. So no data was given and as far as they were concerned there was no covid, even though people were dying. People were brainwashed.
I’m a lawyer so while working from home, I had to deal with clients needing help with contracts and laying off staff. I also had a number of TIAs during this period and started working on two transactions where I was working up to 11 pm most nights.
I then had to prepare for my firm’s 5th anniversary party in September while still juggling with work and maintaining social distancing.
The doctors I saw on several occasions said I had vertigo and after the last TIA, I had the stroke 12 hours later.
To make matters worst my family didn’t handle my stroke very well. Such things are still stigmatised back in Africa so they tried to keep me indoors, told very few people about it and weren’t very compassionate about my struggle.
In the end I fell out with my family in December 2020 and haven’t spoken to them since. I left the country in March 2021 secretly without telling them as both my partner and I knew they would stop us, or at least me, if we tried to leave.
So while I am doing very well in terms of the physical side of things and doing every thing survivors are advised to do, including volunteering, exercising, fatigue management and PT, I am still traumatised psychologically by both the stroke and how my family treated me.
Hello @joy.alliy, I was also misdiagnosed with vertigo (BPPV), but over a three month period while having my brain blitzed by TIAs. From my experience, families can be difficult post-stroke. My own family are okay but my extended family are hard work.
I am new to this and have never done social media but here goes my story.
My name is Darren and 45 years of age, with a very supportive wife and two young active boys of 4 and 9.
I was about to play golf and suddenly felt pain andy whole left side lock up,.to cut a long story short I ended up with a bleed on the brain and around a 5 week period in local hospital.
I am very stubborn and positive person so after been told I may potentially never walk again, I have done really well and are walking and working again
I am now struggling mentally with the last 10% recovery and getting very frustrated with myself and becoming emotional over things.
Any similar stories or advice will be a big help to myself I think.
Darren, you didnt say how long since your stroke but I’m reading that you are still in the early stages of recovery. My theory is that you can repair a lot of the damage done to your body and a little of it will be easy. The rest is going to be a continual struggle.
My fingers have regained a lot of strength and mobility, worst problem now is my talking which has suffered through the social restrictions caused by Covid.
Deigh
). Good luck with your recovery and hope to “speak” again.
swimming has improved my strength also.