Stroke and mirrors

I’m sitting here organising paperwork and going through months of “stuff” lots of letters, summaries, appointment letters I’ve found a few get well soon cards that came alongside lots of visitors, at one point I had a diary to plan who was coming and when, pretty much every day people came: family, friends, workmates. When I got home similar happened then I had a birthday / welcome home gathering with about 50 people. After that people seem to have dropped off, yes I can’t do much out in the real world still but I can sit in my house and talk to people, where’d they all go?

I appreciate it’s not the most fun thing to do to just sit with me but other friends have taken me for a lunch or coffee or accompanied me to a therapy session.

Yes people have lives and I get that.

But I feel like there was a novelty to seeing me in hospital that’s worn off now and people aren’t interested anymore.

I’m still here, still me. Still fighting. Just a bit lonelier now.

Living in a world designed for two working arms and hands is a challenge, I’ve found the odd way to live with them (for now) so thought I’d jot them down in case they help anyone in the future.

Showering, I use a rubber knobbly device from manscaped that feels nice and has a good little grip handle I lay it flat and squirt body wash onto it. Initially I had a wall mounted pump to do this.

Toothpaste, I had a toothpaste dispenser like an animal head you poked the brush head in and afterwards it had a little bit of toothpaste on.

Deodorant, I stoped using spray on after my stroke as my surgical sites were tender, so moved to roll on which became my norm. M good side I just “monkey” it bending my arm under, the affected arm I use my hand to grab the sink then lean backwards to open the arm up and roll it with my good arm.

Dressing: most OTs will teach this and ask them, I learnt in the summmer due to my stroke timing how to wear shorts and T-shirts but struggled come October. They did a quick home session to try and it was doable,In theory, I still much prefer rich to help me.

Coats

If I lay it over my banister I can “drop” my affected arm in then pull the rest around with my good arm it’s not quick or smooth but it works.

Shoes

Initially I wore lightweight trainers as they were light to learn walking in, I then moved up to heavier ones, I tried Velcro but felt like a child so got elastic bungee cord laces from Amazon, one tug and a little clip is easy to manipulate with one hand.

Shoe horns are a great help especially in boots, I love my tombos and quickly realised a shoe horn was required.

“Slip ons” beware the tv advert that shows someone marginally near a shoe and it appearing on their trotters, while certainly easier they still require a bit of effort and skill to learn.

Eating

I use a knork (a fork with a kind of blade) to cut through most things. I was told to try a rocker knife but found it to be useless

I’ve never been a huge foodie or lover of food, in my head I equated food with being nothing more than a fuel. That was until I started hammering the gym on 3000 calories a day with macro counting too.

Since the stroke I’ve found food a difficult concept on the whole. At times the smell of cooking makes me want to be sick, my sense of smell has become hyper accute to cooking. Beyond that my appetite apparently went away with the stroke and despite now regularly walking 2+ miles, gym work and physio I am rarely hungry and when I am I find it difficult to know what I want.

I think some of this comes down to being unable to cook for myself, I was never a great cook but I could cook, my monster Yorkshire puddings were the stuff of legend.

Equally not being able to eat with 2 hands and cutlery is frustrating and embarrassing, I won’t eat out unless I’ve sourced finger food that’s ok with one hand: pizza and/or chips have become staples;even a burger is hard with one hand.

Today however I woke up absolutely craving some unusual meals:

– hot roast meat sandwiches.

– fish ginger sandwiches

Deep pan pizza

And even more unusually a desire for sweet foods (milkshake, chocolate buttons and muffins) which I never really ate before but today desperately needed. Thankfully rich entertained today’s eccentricity and we did a shop to get most of these things. I’ve had fat pizza for dinner, tomorrow for lunch I’ll have a fish finger sandwich. And I’ll eat the sweet things at some point too.

It’s weird how some changes don’t appear until months later. I’m hoping more food means more energy to progress, we’ve booked a cruise in 6 months I want to be able to use a knife and fork for, and ideally put on my nice blazers/ jackets and coats. I own so many and spring in Norway will need all these things

I’ve been pretty stoic on the whole since the stroke, I’m not saying I’ve been perfect or it hasn’t affected me because there were days where I just cried in frustration, anger and remorse. But they tended to be bursts of pain for a couple of days.

I’ve hit another major down day today pretty much 6 months in. While I’ve pretty much nailed the Walking and confidence with that is much improved, my arm still had a grand amount of zero progression. It’s just there as a knick knack, you can see it but there is zero function to it, it’s not even progressing despite continued stretching, NMES stim and attempting to weight bare when doing things like brushing my teeth.

Could I live with the walk I have now? Sure, I’m up, mobile, can sometimes move at a reasonable pace and it’s safe, lots of people have unusual walks for a multitude of reasons, it wouldn’t bother me if that is what remained of my stroke in the long term.

But my arm being zero function, zero tone is prohibiting me living my life, I can’t work, I can’t work out, I can’t type, I can’t drive, I won’t go for meals out because I can’t use cutlery, I can’t read because I can’t hold a book or turn a page, I won’t go on holiday despite the desperate urge to do so because I’m not sitting in a restaurant with someone having to cut my food up.

I’ve thrown everything I can think of and find through research at it, but it’s still sat here going “nah”.

If I could have an elective amputation I would consider it, I’d have less issues banging it on doorframes etc.

It’s not very often I completely lose hope but I’m there today.

I’ve had a physio session and talked this through with a senior physio, and while she’s keen to point out my lower limb progress and that my enthusiasm hasn’t wained so far, to not let it now, visualisation is a thing (apparently). But equally can’t offer anything more than what I already do.

I can see 3 real avenues from here:

1 – give up, look genuinely at something like amputation

2 – go ridiculous treatment, stem cell treatments are available in mainland Europe at an eye watering fee, we’d find the money if I could do it, but it’s not guaranteed.

3 – give up on everything, just accept it’s never going to change and there’s only one final outcome of any life

When I initially had my stroke a SALT (speech and language therapy) assessment was done very quickly to see if I was safe eating (initiallly soft foods: soup and custard) then biscuits, this was in hospital 2 beyond that speech was never really mentioned again

Until month 5ish when during a home OT session we were sat in my lounge with my mum present, the it sat on my living room floor and I was explaining I found the phone harder to use now, my mum said my voice was much quieter and a bit dull sounding which I’d never really picked up on, I’d realised I couldn’t shout anymore but that was it. The OT said she would get onto a Speech therapist when she went back to the hospital, this was a Friday lunchtime.

The following Tuesday my physiotherapy session at the rehab unit was interrupted by a lovely woman named A salt. We sat and made silly noises. Talked as quiet and loudly as we could. She then gave me some homework sheets focusing on breath control and diaphragmatic breathing.

We met again a week later and she was thrilled with the progress, we’d set long term goals around phone calls, being in noisy venues like pubs and trying to get more tone. I’d already become more comfortable using the phone and she set me more homework to practice noise making and breathing again.

Our next session was somewhat experimental as in Lucy had never tried it before, we had a teams session so she could remain in work, it was a bit more difficult as she couldn’t see my breathing as clearly and sometimes the audio wasn’t especially clear for her to listen.

I’d spoken about how I thought there had been progress and that people had commented on my voice being better.

Since then I’ve been out for lunch in a noisy cafe and had a night out in a loud bar with a terrible singer on too, so I think that’s all the challenges complete and Lucy had already said I was close to discharge I think this week will be the end of our time together after 3 weeks, I just wish we’d have known about her months ago

We had our final session 4 weeks after starting, I was now happily using the phone, I could hugely increase the volume of my voice and I had more inflection too. I’d been in very loud places and people could hear me. The therapy had worked L said it was the fastest she’d ever gone through the process and could tell I’d tried and engaged where I could. We had a lovely one armed hug to finish and I thanked her for being brilliant.

It’s the future, I’ve seen it!

I mentioned in exciting things (link here) I was preparing to trial a functional electrical stimulation device(FES) which I’d read about early days in rehab hospital and makes sense to me, essentially my brain has lost how to use the nerves to move my limbs, these run on electrical impulses and can be performed by proven medical devices to massively improve recovery.

I met a man at the disabled gym (link here) early on who had a device and showed me he could do a slow run with it on a treadmill (this device is called a bioness).

After doing lots of research I decided for my leg at least I wanted to try FES, I spoke with my very good hospital physio team who made enquiries to the local FES clinic but instantly declined me due to my pacemaker.

I then set about a search to find where the devices could be trialled or viewed, initially I found nowhere especially local but eventually did find a local private physio willing to help as long as cardiology agreed it was safe.

So between me, the private physio and my very invested cardiologist we set up a 2 week trial to be assessed by cardiology for safety, 24 hours after beginning my loan period cardiology confirmed it had no impact on my pacemaker, so to continue.

1 week after this I met with the physiotherapist again to discuss a couple of things, more related to arm and hand as he was clearly the therapist most aware of modern / alternative treatments and very willing to help.

After a week I walked backinto his clinic with the device on telling him I’d done 2000+ steps the past 3 days completely unaided, much quicker and feeling safer and much more confident, I’d walked my dog and loved the device.

He then said he had tried to get an up to date price list for the device but found the device had been removed from the market and no longer available to purchase.

He did say that with the improvement in walking in general the Bioness I had originally seen might be worth trying as it only works if the user has a high level control of walking to start with and he could get hold of one to try but only in the confides of his clinic and this purchase cost was much greater then the loan model.

We also discussed hand splints and hand training devices, I can close my fingers and quite tightly when I chose to, I demonstrated this to the private physio twice, however opening my fingers remains a non event, I knew splints could help this but despite one being ordered 3 weeks ago by the only therapist that’s ever annoyed me it hadn’t been mentioned since (I suspect it never got ordered) , the physio said it was a shame as night time wear could have progressed me further by now by reeducating my hand how to rest in an open position.

As we were now 6 months down the line just a splint was likely not going to be enough, there is thankfully a more modern option. A splint/ glove which has resistance bands to extend the fingers outwards again to reeducate but also strengthen the overall function with the variable resistance bands

These pieces of kit can be ordered completely independently however it is recommended an approved physio or OTsigns off and sets up the kit, my private physio was approved by the manufacturer and more than happy to help. He Recommended which model of glove to go for, thankfully the cheaper one which after reading the descriptions of many was the one I thought was appropriate.

So I’m off down the leg FES route with no intention of turning back and I’m pushing hand equipment myself too. I’m pleased to have found the private physio who is making me very happy and supportive of any ideas I produce and often the ideal person to get a solid opinion from I am in no way saying my nhs / rehab hospital care team haven’t been excellent because they have but clearly the therapist in the private sector is a bit more ‘current’ in his practice and knowledge of alternative equipment

As mentioned in the post about exciting things ahead, I was preparing to engage with a medical study soon which was incredibly interesting and could have offered some new treatment for my stubborn arm which is still very much not progressing despite continuing physio and OT

However during a screening phone call with the lead medic I was excluded from this study due to having a pacemaker, I have no control over this situation (frustrating when my heart is now possibly the best it’s been in years)and all I can do now is try and engage my cardiac team with the study team to try and help get me a space;In a similar way as I’ve had to get the cardiac team engaged with the leg FES Team (FES post with all this detail coming at a later point)

I am just fed up of everything being a battle. All these promising and modern treatment options exist but just are not easily accessible and apparently not at all for me, as yet, im not accepting ‘no’ without a battle. 🤬🫠

In positives though I had my second speech therapy session this week and lots of people have commented on how clearer and louder my speech is which is lovely. This week is the start of the two week FES leg 🦿trial so let’s hope that’s a bit more promising.

Claire my elder sister turned 40 the month before my stroke, as kids and teenagers we weren’t especially close, but as we got older became very close, especially when Claire had her first child, my mega intelligent niece Rose, as a baby rose was difficult and Claire struggled especially when her close group of friends quickly lost interest after rose was born and disappeared, I started to spend my day off every week with Claire and rose and help where I could, we kept the tradition up even when my nephew Louis joined us, and through covidlock down, I vividly remember once going to her house standing at the back door watching the kids play and being upset I was missing their development and missing Claire’s company

Claire is much more level headed and calmer than me and not much phases her

Her logical brain and non reaction was great during the early days of stroke and recovery, she came to see me every day, but didn’t ever really get upset but she did regularly give me hugs which I always appreciated , after 3 weeks it was school half term and she had a holiday booked with her family and somefriends. The day before she left for the airport she cried and said she didn’t want to leave me, but with encouragement from me and my parents did go and needed a good break as she had also spent considerable time and effort emotionally supporting our parents.

Please sister, can you make me feel ok?

S

Please sister ~ the cardigans 2003 🎶

Last blog (link here) I discussed exciting things I want to try including a leg stimulator and possible medical trial using vegas nerve stimulation, my back up plan of both of these don’t come to fruition is another electrical bio-feedback device a relatively new medical treatment there is only 1 machine usable for stroke in the uk, somewhat accessible from where I live (90min drive) and itkind of does a full nervous system reset on damaged areas (around the body, it can’t do the brain). It’s big in America for MS, spinal cord injuries and extreme muscular and nerve sporting injuries but apparently just very good fot rebuilding neuro pathwayss and neurological conditions.

I found all these things myself with trusty old Google mainly during the sleepless nights in hospital desperate to find a quicker recovery but once the idea is in my head it never leaves and I love tech, I’m basically aiming to be iron man and knew months ago Imight need to push my own treatment agenda and not rely on standard rehab practices that have never really modernised as good as physio and OT Are and have progressed me well to this point I thought there must be more modern treatments and here we are, I’m standing on a precipice of new, self organised and likely self funded treatments with many options and avenues ahead wish me luck before I dive into the unknown, and hope my patience holds on a little longer. I have a plan A,B,C,D written out to adjust for each possible issue or failure.

I’ve never been the most patient of people and even less so when bored and frustrated so you can imagine my recovery so far has been a mental slog with lots of days to fill, a keen personal interest and partial medical knowledge I’ve been reading up on so many stroke treatment options especially newer ones soI’ve hopefully got 2 to try this month (October).

FES knee / leg stim will get a whole post soon because there’s been a saga to get to this point but it’s essentially a band that will wrap around omy affectedleg and when I start a leg movement (aka walking) it stimulates my leg muscles to complete the movement safely and quickly so it helps me immediately in the short term and long term the repeated practice should become the norm for my brain There’s 2 of these deviceson the market:one I’m going to trial for 2 weeks and another which I have seen but is custom made and less obvious to wear but is unable to be trialed due to the customisation but the devicesare much of a muchness so if I like the loan one there’s no reason why I wouldn’t get on with a different type too

Medical trial2, I’ve already completed one trial based around grip of my affected hand and sleep quality;the second trial I hope to be involved with uses a proven nerve stimulator (on a huge nerve in the back of necks) to promote hand and arm movement but rather than have more surgery to implant it, it will use an ear piece that resembles an ear bud ,I reached out to the study team after having info sent via friends of friends at work, and so far the communication is promising, it looks like I meet the criteria, correct age, stroke type and impact and they want to help me for multiple reasons of:my work being a close hospital link, the trial hospital being the place where I had my stroke and the tenuous people links I should know more before the end of the month but I’m excited to try something pretty much proven to help and be involved in medical advancements, the geek in me finds this very pleasing It also comes with a huge amount of physiotherapy which is always good to build in what I have plus I’ve researched thi trial so much I think I could run it myself, but it’sgot to be beneficial to go into something like this aware and educated

I’ll update both of these situations in due course

The idea that by Christmas I could be walking fair distances (like to the pub on Christmas Day with my family, pretty much unaided (no stick or wheelchair) and have some arm / hand use is so very exciting but I darent build my hopes up there’s a lot of smaller steps and hurdles to get through yet and if anyone fancies driving me over to Stockport for possibly some electric brace / stim fitting I would be most appreciative and probably buy lunch and beer too