Stroke and mirrors

I must spend a significant proportion of every day wishing things were different, understandably I think

– I wish the stroke hadn’t happened and the surgical team had taken better care of me

– I wish it had been picked up sooner and then treated appropriately.

I wish I had enough money to try stem cell or epidural stim treatments or some of the intensive treatments in Switzerland and the US.

I wish I could walk more normally

I wish I could run

I wish I could dress myself normally . This one I really miss. My look and clothing mean a lot to me.

I wish I could hug properly, I’ve always been a hugger

I wish I could exercise and weight train to rebuild muscle

I wish I could grip things and release.

I wish I could cook, clean and do more around the house

I wish I could do my hair with two hands

I wish I could travel and do exciting things in fun places like my friends.

I wish I could walk my dog putting her harness on, walking fast enough for her needs and not being wary of the woods and fields I used to love

I wish I could get back to theme parks and on rides without panicking about the safety aspect and what to do with the affected arm.

I wish I could use a knife and fork. Actually let’s not go there the list of places I want to eat and foods is obscene and I’d weigh a tonne in weeks.

I also spend time watching people do things like the above completely mindlessly because they have no impairment and why wouldn’t they. It just makes me jealous; sometimes a little irrationally, why don’t bad things happen to those people? Why is it me?

All I can do is keep hoping, trying exercises, attending physio and trying to either adjust to life now or work to a more regular way. Keep playing the lottery too and engaging with the legal process which might one day provide some semblance of justice and maybe the financial boost to get some of these things.

In another blog post (?which, link) I have written about the two week leg FES trial I had about month4/5 which was incredibly successful.

Fast forward a few months and upper limb FES had caught my eye, I got my nhs physio to refer me to the local centre who were only notable for their lack of action.

So with my sleuth hat on I found the upper limb FES devices they used were all manufactured and loaned/purchased from the national FES centre which, sadly, was located no where near me, but I could self refer and they might allocate a local,partner clinic, so I did and they did, coincidentally the local clinic was the same place I go for robotic therapy and private physio with physio A1 who after 2 sessions I already really rated and liked with instant rapport and respect there.

It was reassuring to know id be going to a clinic I knew and while the physio wouldn’t be A1, it surely must be someone else good.

I went in, very optimistic. When I’d used the leg device it changed my walking in 30 seconds and that allowed me to learn and progress hugely over 2 weeks; I expected a similar experience with upper limb, especially as recently there has been some small progress. Sadly it quickly proved to not be the case and while the physio had told me she had read the notes on file from A1, this proved to be untrue. I was answering, yet again the most basic questions about the layout and family members in my home, did I brush my own teeth? Did I eat? It felt like a regression of 9 months and I know A1 had asked these a couple of weeks before and I’d watched them type the responses, these were not relevant to the session, had been completed by my primary physios in the accute setting and played no relevance to this session. Thanks for wasting my time.

We then had a conversation about FES and my cardiac pacemaker and for the 3rd time since looking at upper limb FES I had to discuss the previous trial and that a letter existed from my cardiologist saying it was fine for me to use FES it had been tested with me and displayed zero impact on my pacemaker , the self referral had included the letter, A1 had a digital copy of it that had been put on file and I’d been asked to send it in again to the clinic a couple of days before the appointment I was now very sure the physio hadn’t read the notes, at all. They started many sentences with “obviously I’ve read the notes but I still need to ask” and repeated this enough times, it was very “I swear I’m not drunk,honest” then voms on your shoes it became notable that they were trying to hide they hadn’t; obviously you haven’t even bothered to read the letter we’re the words simmering in my mouth.

While using the FES and sometimes when not the physio would try and get my arm /hand doing certain movements then immediately stop because, quite often, my shoulder or chest will start a movement, because they do have some movement and it’s how my body has begun to compensate,The physio got quickly frustrated and exasperated“ben why are you moving your shoulder when I want your elbow to move?” I don’t know, hun, cos my arm is knackered due to a well documented accidental surgical error leading to a strokethat as a Neuro physio I’d expect you to be aware of how it works, I would currently love to reach my arm out, extend my hand and give you a really good slap*big exhale*

On the third time of her getting frustrated with me and then starting an insulting explanation of Neuro plasticity and having to learn stuff from scratch, I already know this and could likely teach them stuff at this point, I did lose my rag a little, “I’d like to move these things but just can’t because my body has been ruined”. I was angry and almost behaved worse, I was eyeing a mirror that could possibly take a strong kick but stopped myself from going any further, I think the look I gave was likely enough

I’d now decided I didn’t think upper limb FES was going to be the step I wanted and the physio was antagonistic, rude and hadn’t actually bothered to read the notes or was just lying combined with a poor attitude, I was mentally over the whole session and decided I’d just count down minutes to leave, which must have reflected in my body language as they then set off a barrage of unnecessary criticism about my posture, alignment in seating and even went as far as to blame my mental health for this No I was just completely checked out of the session due to your behaviour . The morning had been Frustrating and annoying. I’d been so optimistic heading in, I left genuinely gutted.

I reflected on it for a few hours while doing some work at home and then set about writing this post and also emailing A1 as I’m sure it would be discussed before I’d see them and I wanted to be open and honest.

I’m Chasing sunsets you can keep the clouds.

Cos ima stay in my lane

🎶Amir ekbitani- “in my lane” 2024

From hospital 3 (link: timeline) I had a core team of rehab professionals physio and Ot.

S1 my primary physio who did the absolute basics in hospital, up to my first steps (post link here please) and hydro when I was home, and my first set of stairs, I really grew to like her, as she did home visits too for a while she was home more than my kids, sadly she left to go travelling about month 6.

S2 an in hospital physio who did the very first sitting when my core was too weak, lovely young woman who didn’t complain when I fully toppled on her, left to go to an oil state for the money and sun (I can’t blame her) about month 4.

S3 an in hospital OT a similar age to me, great humour and sunny disposition, we could clash but not often and when we did she understood why but was still hugely encouraging, like s1 spent significant time doing home sessions too. Was part of the bigger discharge (discharge post link please).

While discharge doesn’t,and shouldn’t, be the end of everything the transition to community was poor and still not fully worked.

Community OT D1 I met once and was full of “with every other stroke patient I’ve done X” and ignored me to look at his laptop the only rude health professional I met, my second encounter was a phone call where he essentially accused me of lying to try and cover his errors.

My original OTs did a re referral to OT L1 who turned out to be delightful, a little older but with a wealth of experience and ring binders, natch, helped me give work a serious consideration.

Physio A1 found through the robotic clinic motion rehab (link: page to links) the first younger man I’d really encountered as a therapist. Him being a little bit attractive might have swayed my opinion somewhat but he was the first to really want to know the biggest picture: what was life pre stroke? How was it now? What were my bigger priorities? Session one he displayed so much interest and knowledge I left excited for my next session.

Session 2 he really challenged my poor upper limb getting great reactions and was genuinely excited by it, his eyes lit up and I loved having someone so excited. quick progress and care make me happy. He quickly followed up with a back and forth email chain that allowed me to demonstrate: I was listening to him and working, I had learnt about stroke rehab and could help push some treatment and also show my humour which he’d not particularly seen yet .

If it were a closer clinic and less expensive I’d go weekly, I wish I’d had access to A1 since day 1

In a previous post (link please) I discussed how I really dislike being called an inspiration when all I’ve done is the same as every other stroke survivor.

Today I spent an hour with someone relatively new to my life the driving assessor who is doing my consolidation hours adjusting to driving with hand adaptions before I’m allowed to drive fully independent again.

One hour in silence 1:1 is a rare thing and the silence needs filling, we’re both quite chatty which is nice and have built a good rapport quickly and have some joint acquaintances and even shared interests.

While talking about other disabled drivers he’s encountered and other stroke drivers he said I’d “been lucky really and dodged a bullet” as he’d met so many people in worse scenarios. I very nearly pulled the car over to leave because I could feel my anger building. I agree my stroke could have been worse, I know how critically ill I was for a while and to have survived is an achievement, but to have made the progress I have is down to hard work, grit and support, none of this has been luck and the entire thing couldn’t be further from the truth, I know there was no malice or ill sentiment in his words but it still annoyed me and not just a little

Initially after the stroke in hospital 3, the only way I was able to move was being pushed in a wheelchair, either by the therapists to physio or around the ward and hospital with my family. When it came time to get home I still wasn’t walking (I was barely standing) the plan was I’d be moved around the house on a wheelchair by Rich, and/or carers to start with, transfer to other seats / toilet / bed with a turning device. Which meant total reliance on other people. I quickly got fed up of this and then the carers kept slamming the wheelchair into my furniture and walls it mentally pushed me to stop using it and pretty much worked.

With the OT we had ordered an electric wheel chair too that in theory at the start was so I could get around the house, it took a while to arrive by which time I was self mobile in the house, so we decided the electric would become my escape vehicle to leave the house, it was capable of covering my entire village and a little more if I needed.

In reality it only had 1 run out. I took myself down to a village pub. Parked myself outside, hopped out, walked myself up the 4/5 steps to get in and to the bar, a woman sat by the window reacted as if I was the second coming of Jesus because she had seen me get out and go up stairs.

The push wheelchair became an outing accessory, shopping trips, days out like my annual Alton towers Oktoberfest boozy weekend with my brothers and that was pretty much it.

In the pub with the electric wheekchairAfter one drink I went to leave to find some idiot had sat in the chair and was trying to mess about with it, I’d locked the key pad before I’d gone in the pub though, sorry. So after bluntly telling him to get off, I trundled home. Deciding it had been successful in action but not a pleasant experience due to other people I decided I wouldn’t bother again. The chair sat in the spare room for a while before I realised I was hoarding a valuable piece of kit that could be used by someone else and returned it.

My walking continued to improve and improve especially after the 2 week leg FES trial. Without really realising the manual wheelchair hadn’t been used for months. I gave that back at month 9.

For a long time I thought I’d be in a wheelchair for the rest of my life which could have worked if necessary however it was never my goal, once I’d taken a few steps that was it, I was going to continue.

The electric wheelchair in particular symbolised an acceptance I wouldn’t walk very far or independently again.

To see them all go and our spare room return to normal felt hugely cathartic and progressive.

Something I’d never really considered, until seeing the interaction both my instagram @thebenrm and this blog get, some posts are well over 1000 views / interactions and a lot of messages But there’s clearly a wider interest in my recovery / progress and the global stats mirror this too, hi to my non uk readers, I see you!

We (me and rich) have batted about the idea of vlogging a couple of times, partly just as an additional way to share and document post stroke life and how I do things now in ambulant disabled life. We’d likely just focus on the more interesting aspects of life like driving, travels and holidays, maybe other exciting things in the future.

So the question is before I try to learn how to edit (or try and pull some knowledge from my a- level in media studies 20 years ago!

Is anyone interested? I’ll put a poll on my instagram when this post goes live, if there’s a yes we’ll consider it, if it’s a no then never mind.

Things that might be interesting coming soon:

– driving again with the new adaptions (look for the driving post)

– first foreign holiday, a cruise to Norway, see me stumbling around the mountains and possibly in rough seas.

-returning to work.

I’m aware my writing is much better than my speech (thanks stroke) and gives me time to pause and think and rewrite. Video is less kind

Prior to my stroke I was a good driver, aside from once driving head on into a skip (a story on its own) and the odd several parking tickets aside, I had a pretty spotless driving record for 19 years. The past few years I’d moved to automatic cars out of laziness Frustratingly, 6 weeks before the stroke I had taken delivery of a car I waited 2 years to build and deliver and absolutely loved it. I drove it to hospital the day before the surgery/ stroke. it was something I kept thinking about during early days; especially when I had zero movement at all , would I get back to driving again? Would I even physically get in a car?

It turned out getting in / out of cars was a pretty easy skill once I started getting some leg strength and walking back. I’ve been in lots of them since, from minis to range rovers I can jump in a car no issue.

Despite being entitled to free public transport within my region,using it to get to or from work was an unrealistic expectation it would be a 20 min walk (with my slow speed) to a bus stop, bus to town, walk to train station then a tram into the city, change tram then another walk into my work, about 2 hours of travel where as if I could drive I could park close -ish to work and it would be so much simpler and about 30 mins door to door.

When we started talking about work and driving, one of my OTs said I could get a free assessment at a local disability driving centre if she referred me so did and it would likely tie to the motability scheme if Eligible

It took almost 6 months to hear from the centre in which time I’d researched driving with only one functioning hand /arm and it was absolutely doable, adaptions exist for so many disabilities including those more severe than mine; I’d likely need secondary functions (indicators, wipers, lights) on a hand held steering remote.

I was entitled through the very, very good motability scheme (honestly the fact this exists is incredible) to a brand new car, adapted at no financial outlay. So I started looking for something that was : pretty small, I didn’t want a big car if driving was going to be a whole new challenge, not too low down and electric (I’d already paid for a charging point for my previous car and I do think electric cars are the future After seeing a few cars I’d have liked that needed a big financial contribution I narrowed my selection to 2 cars one was however taller than the other, we planned to go view them together at motability approved dealers, the first being the smaller car but looked a bit cooler (I am,still, a young man) however we had concerns it was too low down. If it was we would bounce to dealer 2 and a taller but more mumsy car.

It turned out car 1 was great, sporty, the model on the scheme was very cool, lots of tech and not as low as anticipated so I agreed to that one, I was in and out of the car multiple times, stood next to it it was certainly lower than my old car but almost as tall as me.

Soon after I got a date for mydriving assessment through the drivibg mobility centre.

I’d had a battle with the extremely unhelpful DVLA where my photo card licence had expired but as I’d declared my stroke on trying to renew it they wouldn’t reissue it without a driving assessment, I didn’t think I’d be able to do an assessment with an expired licence, the dvla medical team don’t take calls (due to the call volumes apparently. Here’s an idea: answer some and the volume would reduce) so I wasted weeks battling their bureaucracy but was told via letter I could take an assessment it’s just the photo on the card was old, I currently had no restrictions.

Nervous the card would be an issue, but armed with my letter, a car orderand an understanding of what adaption I’d likely need, I confirmed my assessment. In the build up I began to worry what it would entail id not driven for 10 months, never with only one functional arm, I needed this skill to return to work and gain independence the pressure to get driving back was huge ; it’s no wonder I didn’t sleep the night before.

On the assessment day it was a disabled gym day too, I was up, dressed and dad took me to the gym, the distraction being great. As we were leaving the same car even correct trim level as I’d ordered pulled up besides us, I spoke to the driver a younger man who demonstrated his adaptions (multiples of) I explained I had the same car on order, he said he loved his, and I was going for my assessment that day, he wished me luck (it all felt a bit prophetic)I went to my parents for lunch, a quick stress poo then dad drove me to the assessment.

I was interviewed by a driving assesor and OT who were both lovely, interested and sympathetic to my history. They noted my nerves and I explained the importance of driving which they fully understood, they made me feel really at ease.

A few cognitive assessments followed then visual and it was drive time (I wasn’t even sure i would drive during the session, I suspect some people don’t get that far).

I got into the assessors car, he demonstrated 3 adaptions I could try, one we ruled out immediately, the two single hand controllers were similar function just different shapes for comfort. my preference lead to choosing one, shortly afterwards I drove out of the centre using the secondary function lollipop adaption and did 30+ minutes of driving including roundabouts, reversing and busier areas.

Once we returned to the centre they agreed the plan: I’d need 5+ hours observed driving with the adaption, I’d be restricted to always needing the hand control and automatic cars but after the adjustment hours I could drive legally, solo and with no concerns.

I think as a person driving isn’t a huge thing, but the freedom and independence it’s going to give me and means I can do things like go to the shop on my own, so I’m contributing to the household again, and things like picking my daughter up from work are back on the table. Visiting friends rather than them always coming to me And it means Rich gets a break when we go places.

9 months post stroke (you know that “accidental cerebral incident” that happened during surgery where it was <1% possibility of going wrong.

I type this after shuffling round our local pub for the night aware every step is an effort and how poor my walking looks despite my best efforts.

My arm is currently sat across my lap as I’ve got such little arm strength I can’t even hold it up to let it sit on the arm of the sofa, it flops around like a dead fish but heavy and stuck to me. Yes there’s the odd bit of strength there under some precise conditions but it’s not natural, the arm just exists hanging from me.

Did the surgery that left me disabled work? No

Do I have much faith in cardiac surgeons now?

No.

Yesterday I had my due catch up with my lovely local cardiologist. The man who initially put my pacemaker in and held my hand during that as I refused GA and let him poke my heart under local anaesthetic, I have incredible respect for him and I think he genuinely likes me, we’ve got a very good relationship

So after being summoned for a visit I can’t say I was thrilled to find out what was on my heart horizon.

We set off well when after being called he was thrilled to see me walking independently, relatively at speed and the difference from when I’d last turned up with an FES Device strapped to my leg and a walking pole.

So into the appointment where we discussed lots of things but primarily the biggest issue currently is my pacemaker not managing my heart well enough and my heart not being strong enough to pump as he would like.

“Ben we need to take out the pacemaker, wires and replace it all with an internal defibrillator” my poorly working heart fell out my bum and down two floors of the hospital, some pushing questions confirmed my worst thoughts. He can’t do it, it’s surgically too complex and big for a smaller hospital, back to the big cardiac centre and general anaesthetic where I had the stroke. I could have vomited on his shoes. I’ve spent 9 months working my arse off from a surgical accident to re build some of my life and to then be asked to put myself back on the front line again feels intrinsically cruel and just a massive kick to the tits.

I am heartbroken (physically and emotionally). Torn between going for it and going for a long nap on a train line ; I’m not going to do that, don’t panic.

I’m on the cusp of driving and working again, then this shit hides round the corner.

Ending January 2024 in a pretty good place.

I’m discharged from my ‘hospital’ team who did some home and rehab centre work with me since I came home last summer.

So we’re all alone (ish ) now there is some community physio and OT available but no word from them as yet, the odd encounter I had with them before they made a terrible impression so I’m not really bothered if they don’t do anything with me.

Me and Rich continue 2 nights a week in a local gym which gives me great leg strength exercises and we’re seeing bits of upper limb coming back too. We pair the gym visit with a pool session and do self led hydro and some relaxing in the hot tub and sauna which are great for me, I do find I get embarrassed/ frustrated in the changing room being so reliant on Rich to help me. But long term goals to get my independence back on stuff like this remain.

I still go to the sports style massage physio once a month who manipulates my body to make it feel great and there’s some pretty instant responses to it too.

We’ve just started a whole new physio led therapy too. Every other week I’ll get an hour with a private neurology physio then an hour with upper limb robotic devices which either deweight or manipulate my arm and hand to push some Neuro plasticity. We’ve only done the initial assessment so far and left the place so impressed. I’m looking forward to returning again.

I’ve done a half day in work where it was nice to join in some activity and use my knowledge for the first time in a long time. Managed to get home too. And sit with my boss where we talked return in the spring time, just a couple of things to sort first (driving mainly)

But I’ve got plans I’ve got holidays and things to look forwards to alongside things like work and driving where I can regain some control again and I’m optimistic about the bits of upper limb I’m getting back and how far I can get using everything else.