Frustrated

In January 2017 I was on my way to work as normal but by the time I arrived I'd lost 20 minutes from my life and had no idea how to use my computer not even how to log on. Everything new I'd learnt in the previous 3 months had completely gone from my memory. A subsequent brain scan revealed I'd had a very small stroke. I'm very much a well it could have been worse kind of girl and decided just to get on with my life. Just over a week later I slipped on some ice and slammed the back of my head on the pavement, two completely unrelated events it seemed at the time. Time went on and I struggled with learning new things, struggled to access information in my brain which everyone kept putting down to stress. In early 2019 I blacked out in the street and completely lost my speech. The neurologist I saw relating to this realised that the stroke and subsequent head injury had damaged my  working memory and left me with difficulty processing audial and visual information. I have now had my neurological assessment and it seems l am having seizures whenever I need to do something that requires several brain functions at a time. If anyone out there has any ideas how you teach a brain that's always functioned logically new ways of learning that don't scramble it I would be very grateful. Someone did suggest I need to be in upper management as I can see the problem, what I need to solution to be, I just need somebody else to come up with the plan for me, seizure problem solved. ?

Has your neuroligist give you any tips or a plan of treatment?

RIck

Hi Rick

We have had a discussion about taking epilepsy medication but I'm really reluctant, it's not for a specific reason, just a really strong gut feeling it would not be the right thing to do at this time. What has amazed me is the improvement in how things have been in the last 4 months since I've had to work from home. I really wasn't aware how much the impact of to much audio/visual information was having. 

8 years after my stroke I’m constantly amazed by the amount I’m still learning and improving. Good luck on your journey and we’re always here to react, sympathise, encourage, and chivvy (depending on the news!)

Having lost my speech from my stroke last November and only being 64 with a great job, I have found it extremely frustrating not being able to express myself, read, write and use my computer/phone etc.  I have started making progress with technology, reading and communiating with gestures in the last few months, but I miss telling a good joke and chatting with others.  The SALT has been quite poor in my location (south of England) and I am still waiting for a referral after no support since May; I'm looking at Apps and a private therapist as I just can't wait any longer.  I get so angry, frustrated and really upset that I cry a lot which is hard for me as a grown man.   I have been told that I have reached my potential and am unlikley to improve but I have not had the support to see if I can actually improve yet!  Even more frustrating and I can't wait to prove them wrong as I did with my walking. 

Hi Eddie

If there's one thing in life I've learnt it's that a good cry now and then actually helps. There's been many a time over the past 3 years when actually allowing myself to cry has been a strength in its own way simply by allowing what I'm feeling out. I don't think I'll ever reach my potential, to me it's not some point somebody tells you you've reached in life, it's a constant moving path that has blind alleys and roadworks at times, that mean you need to do a detour out of your way, but often a different route can bring some amazing benefits. You may not feel you have the support but it's right there with you every time you log in and chat. Take care, be safe ?

BeeMac

Dear Eddie1856

 

I wonder how is your situation now? May I ask please, what happened with your walking recovery? my husband was told the same thing, that he would not recover, three months after his stroke. Now he is moving his leg, two years later.

Hi. It has been a struggle getting support since my stroke and after 10 months of blackouts and associated falls that have resulted in a broken arm and a severe head injury, I was eventually diagnosed with seizures and am now on epilepsy medication - I've had no falls since then ??
 

However, it was distressing not to have been advised by any medical personnel in over 18 months that stroke victims are at tusk if seizures so 9 months if falls and seizures could have been avoided if I'd known!

my point is that medical staff often treat things in isolation and dint see the whole picture so do make sure your do yours are completely aware of your whole situation and act accordingly ?

Thank you - that means a lot to me and I hope your situation has improved ?

Dear Eddie

gosh me too....the crying is not the old me. But after four years of tears they dried up. Not managed a funeral, but other than that my emotions are much calmer.

private Therapy is a huge help. Ensure the therapist is well versed with stroke patients, it's different from most other therapy. 

it seems to be a requirement that professionals do not raise your hopes, when a stroke got me they were the opposite, encouraging all the way.

being positive will help your recovery. Think lots about what you can do. Don't focus on what you can't do at the moment. Smile. Smile, smile. Your brain will react favourably if you smile. 
be determined about your recovery. Help and support is good, but only you can make the recovery. 

Support for stroke suvivors has been terrible. The pandemic made things even worse. But there are signs of the pandemic easing so help will tickle back. Long covid has very similar problems to us SS. Maybe we can get a boost from the long covid research.

Do not give up. Recovery can come after years, but it's faster in the first two years or so.

best wishes

Colin

Hi, used to be very sociable, bubbly, person high achiever etc ... but c. 2011 in hindsight, I'd say I had a TIA or Stroke. No one would listen at the time, and It was put it down to Vertigo. Nightmare experience. Also lots of Chronic Health conditions since 30's, again lots unresolved. 59 now. Also, am long term Carer for relatives. Now only by phone and for one, if that makes sense.
 

Anyway, not here to moan! I used to be always on Social Media ... but thankfully gave it all up years ago as was spending too much time on it ... but, I'm hoping this Forum will help me, and maybe once I'm feeling bit better I can pass on tips to others who've had Strokes.

had 2 Strokes in last 2 months, and have had to fight to get any kind of help in place. I do thankfully have an excellent Carer one day a week for the other chronic conditions I have, but nothing re Stroke support. Such a relief to find this website. Helpline has been so supportive. Really bad day yesterday ... tried to get a refund online, and after 2 hours of completely stressing myself about it, getting nowhere, I started feeling like I was going to have another Stroke! 

It was really upsetting, as I used to be able to easily function re the telephone, quick thinking, lateral thinking, explaining things .... I found myself becoming so angry at the (I feel) incompetent customer service people, but internalised it ... not good eh? I couldn't hear them properly or understand them either, and they were SO impatient...even though I explained I'd recently had a Stroke. Had a good cry, but hard to accept. This is not my personality.

so, rather than here in misery I thought I'd reach out to the Community, say Hello, and ask for any tips. I can't shop any other way unfortunately.

also does anyone know of any Lists of PA's (Carer types) in the UK that are (obviously) qualified and crb checked? Is anyone else finding it hard to locate PA's/Carers?

love animals, nature, Sci Fi, Space related stuff :)

anyway I'll leave it at that, but Thankyou for all being here and I hope you're doing ok. I might just not concentrate so much on correcting grammar actually, I'm sure you'll all understand:) apologies in advance! Anne

Hi Eddie, I'm so sorry to hear this, very similar story with me ... must be a nightmare for you. I can relate to the 'having a joke with others' ... I used to not be able to remember punchlines anyway, but now it's even worse! I got really angry (inwardly) yesterday just attempting to call a customer service person to get a refund.

I feel the message needs to get out there(excuse the sort of pun!) that people who've had Strokes sometimes may need a bit more time to speak, process stuff etc. I even kept saying I'd had a Stroke recently ... and no reply, and just carried on speaking rapidly.

I'd say ignore whoever said you'd reached your potential, just my opinion! On the Stroke Helpline recently I was told (paraphrasing) that new research has shown the brain has the capacity to continue to adapt/build new neural pathways... something like that. Apologies can't rememember exactly except 'Neuroplasticity'. 

well done for your positivity re the walking ... I genuinely mean that and find it inspiring to me, as I'm feeling a bit deflated at the mo. SALT referrals poor here too, ie overloaded apparently.

anyway, I really think sharing as you have can help others, especially re crying, ... because even as a female I find it hard to cry esp in front of others ... I'm v stoic and all that! Anne

Hi Ann , stroke 2 years ago,  aged 61 . Absolutely knocked my confidence,  almost get tunnel vision , on looking for problems & then endlessly worrying.  ANXIETY.  

Telephone discussions , learnt HARD WAY , like you ! Most do not understand stroke & slow down,  speak slowly,  ( I find now need time to almost process, think of reply.  At home my wife understands me , that I am best to leave endless notes ?. ) Worst was on line chat with Vodafone,  for half hour ! Still did not resolve problem. 

Now will ONLY e.mail,  find I get better response & will be passed to best person. I state at start , stroke,  brain damage,  keep it clear & simple , I then have time to process reply,  that is , if they have actually read my questions & not just sent me a STANDARD reply . 

Successful day , actually drilled a hole for shower pipe,  just like old days ! Except instead of 1/2 hour , took 3 hours,  also looking down,  not good for me.  SHATTERED,  bed for rest of the day. BUT something about feeling I have achieved something,  in my little world , feels good . All the best David. 

Hi David, taking me a while to work out how this all works, hope this reply gets thru. Thankyou for replying. that's one thing that gets me, post stroke ... when I eg send an email/letter off into the ether-and no one replies ... and then I'll have forgotten about it, so have to keep chasing it. That's why I tried the telephone again, not a good move tho, so back to email.I agree the standard copy and paste replies are so annoying! But yes email is best, then you have paper trail too.

anxiety ... not good, am trying to do 'mindfulness' and all that, but my patience and calmness definitely has lessened ? early days I suppose. Hope this improves?

Notes ...I'm just getting into that as a solution, thanks for the reminder. Great that your Wife understands. Thing is, due to the health stuff, the notes I write don't always stay where they're supposed to be, (drop them, fall/stumble onto them and then they get stuck to my clothes ?, or they disappear into all the NHS letters and reports, or my writing looks like ET's.

Know what you mean re Vodafone ... used to be a customer with them ?

Thats amazing David! (That would scare the hell out of me even BEFORE the strokes ?) am def not a DIY person. I feel that any acheivment we all make has to help send positive messages to the brain, muscle memory and all that. I think that sentence made sense. I'd love to Surf again ... maybe one day ? then I'd know I was back to me. Love the Sea.

Seriously though, that feeling of doing and completing something relating to before the stroke is brilliant, even if it does take a bit longer. Time is irrelevant I feel.
 

thanks for being my first replier David, I know that's not good grammar but hey!

have a well deserved rest ? Anne

 

Hi 

 

sorry to hear that and hope things improve 

its hard to get any support as the NHS is stretched to the limit and physio treatment is just not available unless you pay privately which is £90 per hour as it's specialist neurophysio. 

I've had about 15 hospital admissions after falling several times and it turns out the falls are from blacking out after having seizures which is apparently a risk with a stroke but I was not advised about this so quite distressing. 
 

im much weaker and very depressed. I've been offered steps to well-being but I'm non-verbal so only online webinar/powerpoint slides with a group is available. Not the same as 1:1 counselling ☹️

Hi Colin

 

sorry to hear that and hope things improve 

its hard to get any support as the NHS is stretched to the limit and physio treatment is just not available unless you pay privately which is £90 per hour as it's specialist neurophysio. 

I've had about 15 hospital admissions after falling several times and it turns out the falls are from blacking out after having seizures which is apparently a risk with a stroke but I was not advised about this so quite distressing. 
 

im much weaker and very depressed. I've been offered steps to well-being but I'm non-verbal so only online webinar/powerpoint slides with a group is available. Not the same as 1:1 counselling ☹️

That's great news!

 

the doctors just don't seem to be up to date with their research relying on traditional data to make decisions about people's lives. 
 

im still employed but a brain injury specialist and 2 Occ Health doctors have told my employer the adjustments for work would be too complex, highly unlikely to be successful and not to pursue any further medical assessments. So angry about this!

its hard to get any support as the NHS is stretched to the limit and physio treatment is just not available unless you pay privately which is £90 per hour as it's specialist neurophysio. 

I've had about 15 hospital admissions after falling several times and it turns out the falls are from blacking out after having seizures which is apparently a risk with a stroke but I was not advised about this so quite distressing. 
 

im much weaker and very depressed. I've been offered steps to well-being but I'm non-verbal so only online webinar/powerpoint slides with a group is available. Not the same as 1:1 counselling ☹️

my sister is advocating for me to get proper SALT support and to make sure my employer is not influenced by the negative feedback from supposed specialists  

hope things continue to improve for your husband ???

 

Hello Anne, did you have a cerebellar stroke by any chance? I was misdaignosed with BPPV for three months before I had the proper big one. 

Hello Rups ... I actually don't know!! It's been a complete nightmare trying to find out exactly the name re what type I've had, so that's a good question. NHS in a real mess where I live. Am on waiting list to see a Neuro Specialist then will hopefully be given 'a label' ... not that I like labels, just want to understand why this has happened. Wasn't a TIA, so that's one crossed off. Just read about cerebellar ... some interesting similarities. Apparently severe stress can instigate a Stroke, have you heard that?

Hi Eddie,

Thankyou for your Kind wishes. I didn't realise a NeuroPhysio existed, so Thankyou for that. I'll look into that one.

I also didn't know about the possible risk of seizures after a Stroke! I've had lots of falls in the past, and definitely DONT want that again. So sorry to hear about all those blackout and falls ... is there any support meds wise re this? I'm sure it would have been suggested if there were ... but not necessarily I suppose, depending on which Dr/Consultant you see.

Not sure what steps to well-being is; yes, I can understand why a group setting wouldn't be the same as 1-1 counselling. Some Therapists will do Home Visits, and (not the same, I know), if you've access to an IPAD for example have you thought of communicating through typing? 

A good Counsellor will be able to 'listen' on so many different levels ... not just with their ears! Maybe your GP might know of specialist counsellors?

Sounds as if you're feeling low, Eddie, so am I today. I'm trying to distract myself ... watching my Lava Lamp(you know from the 70's) bubbles ... yes! Honestly. Then I'm going to sleep ... sleep can be very healing I find.   

Thankyou for your reply Eddie, wishing you well, Anne ?