Stroke and mirrors

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

Like the kanomi code in video games I cracked the nhs cheat code in hospital 3 (the long term rehab one) it was done purely by having a mother who has been a senior nurse in that hospital for 20 years and a reputation, rightly, for no nonsense and being direct who knew everyone l.

When I complained I was bored in my room at nighttime she told the senior matron in the area and a tv was purchased for my room (but never used by me it never left it ls box outside the doorI hope whoever ended up in that roomafter me appreciated it

One morning I was having an assisted shower and the laundry room hadn’t sent any towels to the ward, she went to her work area with a ward support worker and dispatched many, many towels to help out. The staff loved it, and me sat naked, shivering on a wet shower chair was very pleased, I’d heard most of this through the door and knew what she would be doing

I think sometimes I got a bit extra care or attention because of who she was but it didn’t do me any harm and I wouldn’t have hadit any other way.

I’m sure I don’t need to talk about all the big, obvious I miss in post stroke life: walking. Driving, working, generally using my arms, fitness, hobbies, going out for meals and using cutlery, dressing nicely etc

There are some smaller things in life that sometimes I just go “oh” when I realise it’s not something I do/ can do…yet or go to do and my body simply doesn’t respond

I missListening to music, during my drive to and from work and in the gym

Doing my hair with two hands, it’s harder with one and limits what products I can use. I can’t get the look exactly how I want and if I use a paste style product I can’t rub it in my hands first thankfully Rich regularly helps me by fluffing or styling as I lm going out

Hugging people, yes I can hug with one arm if people know my issues and I absolutely do hug with one arm but I miss gripping people between my arms and having squeezes, rubbing someone’s back when they are sad or just patting their backs sound so insignificant but I’m an incredibly tactile person so this is hard

Wrapping up in a blanket as I can’t get one out and unfold it and place it over myself on the same vein: not being able to sleep o n my stomach anymore as I can’t get my arms under my head and pillow to be comfortable

Having lunch with my sister on my day off every week then walking to pick her kids up from school (see hugging also) one day I’ll do a whole post about her and how great she has been through this (in fact somewhere I’ve drafted it before)

Gesticulating when I talk. It turns out I’ve always been a bit of a hand talker and never realised but now it’s so frustrating.

Eating chicken wings. I have a big love of spicy chicken wings but they can’t be eaten with one hand and trust me I’ve tried

Carrying two beers in my hands. When I get to a pub with rich or friends I can get around and carry one drink as my walking is pretty stable but I can’t get a drink for anyone else

Shaking hands. It’s just a polite thing to do and while at times I can just use my right arm it’s customary to touch their arm or double the hands and I feel rude.

Shaving – I’ve got quite good with my Phillips one blade and one hand but sometimes you need to pull your face and skin to get it right and that’s not happening as yet

I touched on this topic previously and that I dislike people talking about me, this isn’t your story, it’s mine, andas shit as the story is one of the few things I can do is take ownership in one way and that’s by being the one to talk about it when I need to.

I also hate a opinion / treatment that because I’m now classed as disabled and not how I was before the stroke it gives people the right to comment on what I’m doing, the other week we ran into someone in a shop who wanted to know why I was in the wheelchsir and not walking when they’ve seen me waking around recently well, I’d walked a lot already that day I was tired, it’s slow and frankly none of your damn business.

Same as if I go for a pint with my dad I don’t need comments about me being in a pub (it doesn’t matter how many times I’ve been there recently l)or counting my beers, I’m still very nearly a 40 year old man, I fully know my situation and don’t need your comments or judgement. Jog on because I can’t, I am still allowed to do social and fun things and they make me happy so your snidey comments won’t change that, why not be supportive or dnouraging “Ben it’s nice to see you out” isn’t too difficult is it?

Within a few weeks of being home it happened for the first time while visiting some family a semi- distant younger relative was asking about my recovery, not long after I stood up to go to the toilet; as he watched me walk to the toilet with my hiking pole he told me I was “an inspiration, Ben”

A couple of weeks after that someone found my blog and contacted me to say they had read it all and my journey was inspirational to read.

I appreciate the sentiment of these words are nice and well meaning but no one has ever said things like that to me before, not when I went to university with two young children a job and a mortgage, not when I won awards for my outstanding work developments to help cancer patients as an openly gay man in a northern working town that hadn’t progressed since 1975.

DioI feel inspirational? No, I played the word over in my mind and the only reasoning I could think was; there’s been countless stroke survivors before me who have gone on to achieve so much, my rehab feels very run of the mill and normal, and I never really had a choice in any of this. The stroke happened and either I prepared to lay in bed for months, maybe years then possibly a wheelchair or I start again trying to regain and learn; perhaps that wasn’t an easy choice and people see that but again most stroke patients try to get some recovery. I don’t feel unique or special, I certainly don’t feel like an inspiration. I follow 2 stroke survivors on instagram who ore inspirational to me, one is a lovely chap from Blackburn who pre stroke was a firefighter and just over a year after his stroke was back working in incredible physical condition and back behind the wheel of a fire engine; the other a young Canadian guy who had a stroke in his early 20s while playing ice hockey; in a year he was back on the ice and also in the gym looking great; these men who bounced back so quickly and regained their lives were inspirational to me. My very normal journey so far was not

I wasn’t the first person in our family to have a stroke, when I was a child (about 8 I think) we were on holiday in Florida doing the whole Diseney world holiday, my mum called home one day to speak to her sister who told her that their mum my nanan Vera had suffered a stroke. It was a large stroke similar to mine. She lost use of the right side of her body which had been her predominant side a lot of her speech functionality went too.

I don’t remember much of it, but I remember she still held court every Saturday in her kitchen surrounded by her children and their families. She still cooked a mean Sunday lunch too thst always had Yorkshire puddings as a starter, on reflection the woman was a genius! Cooking something difficult like a Yorkshire pudding with one arm and not even her predominant arm.

She had a stair lift installed and I don’t ever recall her walking stairs, Msybe an outside set to get to bingo in the community centre across the road apparently the council installed a handrail for her to get up and Down

Eventually in my teenage years she moved into a special shelteredflat for her safety, she was still somewhat unsteady, had developed epilepsy and had a bad chest, the flat block had a warden who lived in the flat next door and would nip in daily to say hello and if nanan pressed a buzzer for help she could go and help if not it connected to a callcentre who could despatch an ambulance if necessary.

I don’t recall her having carers but apparently she did to help wash and dress in a morning, get her breakfast, make her a sandwich at lunch leave an afternoon snack and also plate her a meal in an evening.

As a family we would all visit on a Saturday with lots of my aunts, uncles and cousins, I’m aware my auntie Jayne and mum used to go a lot of daytimes to help her and keep her company.

When I was 16 and at college I would sometimes take a bus home that passed her flat and decided on my half days I’d nip in in the afternoon so did for a while, I’d make us tea and sit and watch tv with her, although I sometimes felt bad if she fell asleep like I’d disturbed her day.

She survived many more years. Jokingly known as the creaking gate due to he various illnesses and even broke a hip too, she outlived her husband my grandad Jim by a few years too.

Through much of my stroke recovery the wider family made comparisons to things she had done or things I was doing, I’m not sure that’s the legacy she would want but here we are, it’s the only comparison they have to use and I hope if there is any form of afterlife she’s been watching me since mine happened and has been pleased with my progress, I’m doing this for us both nanan Vera.