A little about me

Hi Folks
It’s been 2 years 2 days exactly since having my TIA Stroke & has been quite a journey for me which I’m still on with a more acceptance of what this brain injury took away from me . Granted a lot of people using this site will not I’m sure be so blunt in saying so & that I fully understand .
I was a social worker of 34 years my passion in life was/is ( that’s still a difficult activity I solely miss) was gaining my PPLH > Private Pilots Helicopter Licence … if not working I would go to shows meet up with other helicopter enthusiasts to be honest it was my life as was my 24/7 job as a Social worker . . I’m single ( was brought up in care for the 1st 21 years of my life ) happy to chat with anyone who wishes to know more about that with me … so going back to my stroke where because of the severity of the injury I was medically retired as well as taking all my licences away from me
Helicopter/car/hgv1/pcv… you can imagine what that had done to my moral ok 60 is not Old but old-ish I like to say & felt a great loss which lead to having a nervous breakdown & still to this day suffer depression & see a psychiatrist every week along with talk sessions which I seem to parrot my loss & how it has in many ways changed my life round from social/personal & at present seem happy with my own company & not intruding or embarrassing myself with my now walking stick & this imbalance & body tremor on my right side . I’m waiting for a placement in a gym near by which is what I need to strengthen my body parts & socialise again instead of this rather pathetic person I’ve become in recent months … no this is not a ( get out the violins) this is me sharing with yourselves the difficulties this stroke has impaired my livelihood.
I’m well aware I’ve posted this on the driving section & last year took over thanks to PIPS/DLA. A brand new racing Green Mini Cooper . it took me all of 1 year to get my car licence back with tests/letters from hospital/Dr’s/DVLA back & forth .& now the proud owner of this wonderful car … I’ve been. Mini fan for 40 years & this DLA car will be my 14th mini to date … I go for long drives/shopping/parks & has helped me enormously in getting back to some normality in my life …

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Dear Jordan

Welcome on board the forum.

If you don’t mind, would you tell me about the damage the stroke did to you ? I suggest you are one in a million to

Hi
Sorry didn’t give more detail apart from saying Stroke
With the TIA stroke I have a weakening on the right side which shows more clear when I walk hence my walking stick & with walls ect I’m able to stop/hold on correct my balance .& with it an Essential tremor so have this not thankfully Parkinson disease but shakes all the same are exasperated more when stressed anxious.

Sorry my first attempt at a reply failed. I am hopeless on this site.

It is unusual to have a TIA case on here.

So you are special.

You are doing well to drive on longer trips. I have only driven one Mini and that was an Austin. Would that be an Austin 7? No door handle. Cornered very well.

Seasons greetings
Colin

ahhh the old Austin funnily enough I passed my driving test many moons ago in an Austin 1300 1st time as well feel sorry for people wanting to learn how to drive nowadays . & laugh @ how easy it was for my generation 20 mins drive & 3 high code questions all taken in a small Scottish town called Nortg Berwick .

Hello @Jordan, welcome to the stroke community, and the forums. It sounds like you’ve had a rough ride of things, I am currently of the opinion two years is minimal recovery time and there’s a lot more rehabilitation needed after that. I’m pleased to hear you got your licence back, and can drive the kind of vehicle you love. Any chance, The Italian Job is your favourite film? I had a Nissan Micra (Sunday car) before my stroke but sold it afterwards to a fellow who races them. To be honest, the stroke was a “get out of jail card” for me when it came to driving, I found it stressful and burdensome, so I have now joined the PT brigade. This has its drawbacks, as living rurally, we have very little PT infrastructure. I’m sorry to hear you went through a nervous breakdown on top of it all, depression is just as debilitating. Are you doing any vestibular rehabilitation exercises? Sounds like the tremors are something to do with your central nervous system, have you tried TENS? I am not familiar with it although am to understand it can mildly reduce tremor. I had a bilateral, multifocal cerebellar infarction on top of six TIAs prior to the stroke in September 2021. I have severe oculomotor dysfunction which makes any kind of movement or looking around like being on a boat at sea. I have just stopped using my cane, and now walk around knocking things over as if I’m in a pinball machine, but I’m in no danger of hurting myself, just making a right old mess. Hope you are having a decent festive season. My best friend is a social worker in rural Victoria, Australia.

Hi Jordan @Jordan welcome to the community.

Stroke is cruel, it takes so much and changes our lives, you’ve had a rough time and the losses can be hard.

It’s wonderful you’ve managed to get back to driving and have some normality in your life.

Wishing you all the best, stay strong.

Thank you so much for such kind words I guess we’re all on this endless journey to perfection what ever that is & continue daily to get that “ normality “ back then I ask myself what in society is “normal” these days …
Being able to drive again just being in charge of a machine which I have total control over is like for me piloting a helicopter . I know sounds ridiculous right but I’ve found myself making blade slapping noises when driving . Yikes I’ll get sectioned under the mental health act if anyone phones … lol
But your right being able to drive again has opened door to the freedoms I once had b4 the stroke & with constant pushing from myself these trips are getting further to the point I may have to plan a packed lunch one day …lol Thank you again for your kind txt & look 4ward in chatting again sometime . B/safe B/Strong

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Hi Rups
Interesting name . Short for Rupert perhaps .or is my guess way of … lol
You mention Victoria Australia . I was Born in Melbourne Australia & was brought to this Island as an 8 month Yr old baby @ that very tender age I was put into care Dr Barnardo’s as it was known then & used( wrong word …) was able to help all these young females who wanted to become nurses . Doing my bit for Queen & country you might say … lol
Your stroke sounds far more complicated with much more complications than mine . Perhaps when was told earlier I was special makes sense in someways … .
If I’m honest Rups I never saw anyone else during my 3 months stay in hospital & with all appointments ect I’ve had since . Is anyone with the brain operation I had where they took a part of my skull 1”by 1/2” from front of my head not replacing the piece of skull I have a slight dent now in my head & always laugh when getting my haircut having to explain it’s fine you won’t loose your siasors down there lol . I like a no1 crew cut since I’ll school days so having my hair short it dose make people stare I guess or ask . Which is fine & alway tempted to tell them a story of crashing a burning helicopter & being pulled to safety . Don’t know what stops me telling that story . Perhaps to dramatic .lol
I bought myself an exercise bike & pedal 5-10 miles a day while watching sky news . I’m told to strengthen my muscles but with all the wobbling walking bike riding I do I become disillusioned for as much good these muscle strengthening activities I do I still walk like a drunkard & my body tremor seems to always be there . Am I expecting to much with this mad gym regime I’ve got myself in …? I question that a great deal … I also on medication for all my stroke concerns Primicone for my tremor … Amlodipine… Clopidogrel… & a trial medication I’ve been on for nearly 2 years now which is Statin based enough there taken daily to be getting on with & im sure many others on here are on far greater medication than the small amount I’m taking …
wonderful to chat with you Rups & enjoyed replying to you . Let’s chat again soon . In the meantime enjoy the rest of the festivities B/safe & stay strong :+1:t6:

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Hi Jordan,
Have you tried Pilates? It’s brilliant for core body strength. I have right side muscle weakness. I have an ARNI trainer (worth their weight in gold), go to the gym & swim, but Pilates really strengthens the core muscles. You can do it at home as well, so it doesn’t break the bank.
I agree with you about the freedom of driving. I live in a small village with a very sporadic bus service and when I got my adapted car I got back my freedom to a certain extent.

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Hi Minnie
& thanks for your reply .
What a wonderful bunch of people in here I never expected to get such a positive return on my initial Hello .
.
You mention Pilates that’s Yoga I think stretching
Exercises … I actually watched a few videos online & putting my gym kit on well when I say gym kit I meant my underpants & trainers & tried a few of these stretching movements & sadly gave up with my balance/weakness I found it to be more challenging than an enjoyable way of exercising. Now swimming on the other hand is an activity I was once a very competent at I was swimming at the age of 4 loved anything to do with water especially diving . Not meaning to blow my own trumpet here . I was bloody good . Last ever time I was in a swimming pool was during my rehabilitation twice a week class where there was a small warm 5ft deep baby pool with an normal size swimming pool adjacent to that for many weeks I would tired water / pick up item with my weak right side & this activity went on for weeks I became so disillusioned with my progress & kept asking if I could staying at the shallow end of the large pool enter . Sadly I was told that right now I needed to continue with the baby pool & never seemed to ever advance from there which if honest annoyed me so much .the baby pool was large enough to do 3-4 strokes of swimming with my weak side & imbalance I couldn’t swim like I once did . Yes to float on my back that I could do but that’s not swimming really is it . I gave up . Was I wrong to I wonder 8-9 weeks with 90 min sessions in baby pool & I had lost or feel I’ve lost that duck to water person I was once . I’m told by the professionals I’m to keen & it’s about progress not results the next again day … I know that & perhaps it’s my own impatience that blur the real goal of getting back into the water . No not as an Olympic swimmer just a swimmer . So that quickly went down hill from me there & gave up on that having no results I was looking for . So right now it’s my exercise bike lots of park walking which I’m told is a form of exercise & I do these things daily
Minnie don’t get me wrong your suggestion I have indeed taken on board & tried in the past . Sadly my own frustrations seem to get in the way especially when I don’t see progress on the outside perhaps inside upstairs where it all happened is benefitting more with what I do for the outside . I just don’t know really …
thank you for such a kind response & hope my little rant doesn’t stop you from making contact again which is very much like … Enjoy your day B/safe Stay strong

Hi Jordan @Jordan, I ‘hear’ the frustration in your post however try taking stock of what you can do and aim to build on that.

I appreciate you are missing a huge chunk of achievements and everyday lifestyle and activities that you studied and worked hard to achieve and that can lead to frustration and despondency, that said you survived and are alive. Unfortunately none of us can change what has happened to us but we can strive each day to accept this new version of ourselves and move forwards.

Think back and recall the progress and little achievements you have made each day since your stroke, do you walk better, has your balance improved, do you fatigue less often?

I know it’s not the same, these achievements may seem minimal to what you once did, to a SS they are milestones to be celebrated.

Don’t give up on trying new exercises because you don’t see improvement the next day, take encouragement from the fact that you tried and succeeded, albeit wobbly or with less style and gracefulness that you would have liked.

Stay strong, believe in yourself, you are a survivor. Best wishes

Hello Mahoney
You sound like my Dr’s in saying that I don’t mean it in a nasty way as I read what your saying & do often take stock on what achievements I’ve made on a daily weekly basis but perhaps it’s my make up in wanting to see more of improvement in what was taken from me with this stroke . I sometimes go hammer & tong on my exercise bike even breaking into a sweat pushing myself which perhaps is not a good thing in alot of ways as I become tired way before bedtime & start berating myself & getting annoyed . Yes I hear what indeed your say in a slow progression in getting my muscles to be stronger to support my body using my legs to make for a cup never mind the length of time in making a simple cup of coffee with either a smashed cup on the floor or the contents of coffee all over the work surfaces . Progress yes I believe there are some but what 2 years down the road and still find myself on that preverbal road to recovery I’m sure a lot of other readers on this site have the very same attitude as myself sometimes . Yes it is a struggle & there are good day & bad days but for me & many other Stoke patients I’m betting they would agree with my when I say more bad days than good days … ?
Yikes I’m ranting again . 1 of the reason I like this site is to off load I guess with like minded people who have a much better understanding of my frustrations that I can openly share & always nice to read feedback from other members . .
Am I being a bit OTT you think .??

No @Jordan you are not being OTT, we remember what life was like before stroke and we can’t help wanting to be like that again, it’s a huge ask to simply accept the limitations we experience now without a struggle and that determination to improve will drive you forward.

Keep pushing yourself, though please do try not to overdo it, our brain is different now and it tires more easily and it has a nasty habit of letting us know we’ve done too much, as you will have experienced yourself. Balance is key but never give up.

Rant away, there’s a lot of people on this site that can give you input and their perspective which may assist you or, will be a friendly ‘ear’ to hear you when you want to unload.

Nice to chat :+1:

Thank you again Mahoney
Being a member of this site & reading & was unknown to me till joining this site how many varied strokes there is out there a real eye opener & would like to add for anyone else reading this is I take strength from your strengths in reading your many messages & replies

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Hello @Jordan, you are spot on, Rups is short for Rupert. The stroke I had was quite rare, cerebellar strokes in themselves only account for 1-2% of all strokes, the fact that the one I had was bilateral (both sides of the cerebellum) and multifocal (dispersed damage) makes it quite rare, I should have bought a lottery ticket that day. I had six TIAs over three months, misdiagnosed as BPPV. Finally, the big one got me, and was still misdiagnosed by paramedics, and at the hospital. It was only the following day after the stroke that it was identified by MRI as a stroke. Initially, they had given me a CT scan, but cerebellar strokes don’t show up on those scans because of the amount of bone surrounding the cerebellum. That morning, the doctor erroneously and with a smile on his face, told me my brain was okay, but later that night, another doctor, not so smiley, gave me the news.

Hello again Rup’s
My goodness as that saying goes you have been through the wars my own stroke seem infinitesimal to what I’m reading of your strokes talk about oneupmanship my friend you score very highly on my list & reading you last message I get a sense of direction/confidence in how you’ve adapted to your way of life truly amazing Rup’s just WOW! Stay strong

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Hi Jordan , I think I was similar age , when I left Australia. Mum was not married & believe she disappeared there out , of shame! It was never talked about. Interested in , how you went into care system? Good talking David.

Thanks @Jordan, It sounds like it, but what I have learnt from stroke is that every stroke is different, and everyone experiences a subjective and relative degree of hardship, anguish, and pain. There is a maxim in the medical profession that if you could choose a stroke, then a cerebellar stroke is the one to choose. I don’t feel that way about it, as each disability and symptom comes with its own set of problems. Would I want to trade a symptom, I don’t know as I don’t know what another may feel like. It’s such a struggle for us all, especially on the days when nothing works properly. I was born on a small island south of Melbourne, you may have heard of it, Tasmania. My father was working in the antarctic, so our family were based there for a while, right down the southern end in a town called Franklin, we lived next to the Huon river. Had an apple orchard too, as well as peaches and apricots. You mention you ride an exercise bike, after the stroke, I could hardly walk but I was able to ride a bicycle. After coming out of hospital, I restored a 1958 Raleigh Cameo step-through. It had to be a step-through as I couldn’t mount a cross bar frame. I could ride for about an hour up and down the lanes, strangely, procedural memory kicked in and I didn’t get fatigued, but as soon as I dismounted, I wobbled and shuffled off to bed!

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Hi Rups
Yup indeed I’ve heard of Tasmania & know it’s location in an atlas my only real connection with Tasmania is a once favourite cartoon character Tasmania devil (Tazz) I even had slippers with Tazz emblazoned on them . Ahhh cartoons 2day nah they’ve lost that 1970s touch to much of an Anime cartoon sadly now
an orchard yum I’m always experimenting with different fruits when making a smoothie in this wonderful blender I treated myself to a few moths ago so right now it’s pears/plain yogurt & granola yum yum . . . I was on my exercise bike this morning managing 2.3 miles & not thankfully breaking out in a sweat so you can imagine the leisurely pace I had adopted . Lol.
I totally get the wobbling on the dismount you have Rups I do have this sudden imbalance & it’s a safe grab on2 a surface to steady myself . … yikes!!
. went for a drive later just to the large Sainsbury (am I allowed to use brand name here :joy:) & bought grub the Sainsbury nectar card I have is wonderful now with my shopping/petrol/ebay I’ve amounted points where early next year I will treat myself maybe even a fancy walking stick :grinning:
B/safe stay Strong Rups :+1:t6: