Stroke Care Teams

I have had the pleasure of speaking to many people who have been affected by stroke whether that be from people who themselves have suffered a stroke, or family members that understand the difficulties faced during rehabilitation periods to workers that have to work with stroke victims on a daily basis. I would like to share Amy Kelland's story who is an incredible care worker who rehabiltates stroke victims, and she has been kind enough to write a short testimonial detailing the types of patients she works with. If people donate to stroke organisations and help promote stroke awareness then it'll help give institutes the best equipment to ensure the best rehabilitation for all stroke patients:

I work as a domiciliary care supervisor.  In the community we have a large amount of service users who are stroke survivors.  I feel that the care staff sometimes find working with a stroke survivor as a daunting task especially when faced with someone with communication difficulties.  We have service users who cannot speak at all following a stroke.  People who cannot express what they want/ need e.g. mixing up yes and no, asking for a cup of tea when they want coffee.  This can become frustrating for both the care worker and the service user.  I encourage the staff to have patience and to actively support that person to get what they want/ need.  It can be a long, difficult road for some people.  But, I feel with the correct amount of support and time the service user can have massive benefits and improvements. 

The other big difficulty many of our stroke survivor service users face is mobility problems.  We have service users who have difficulty walking and also difficulty with fine motor skills such as doing buttons up.  We encourage our service users to do as much as they can for themselves, we help them with any tasks they find too difficult.

It is all about re-abling the person to live as much of a full life as they can after a stroke.

 

Learning to walk again!

http://telly.com/0RGXZB

Thank you

Whilst I know on this blog I have shared a lot of the bad experiences I had, I have never once failed to recognise all the good experiences and there were lots of them. I just want to take the time out to thank those members of staff at New Cross Hospital and West Park Rehabilitation. Also my family and friends who have been incredibly supportive and just for being there. Today, I look back on then and I can't believe how weak I was, especially as now I feel physically stronger then ever before. I'm hoping to do a fundraiser in September to raise money for stroke to give something back after they've given me my independence and me back. I'd also like to thank those of you that have gone to the efforts of sharing this blog to help promote stroke awareness, I hope that by sharing my experience that it will open up people to the whole support unit that goes into helping stroke victims rebuild their lives and how strokes impact not only the person but everyone else around them. Please share your stories as I believe there isn't enough awareness out there especially for young people too.

Can I go yet? TAKE #53

It's ward round day and I'm trying to keep a cool head, I mean if I am being discharged today then the celebrations can begin but if not then at least I'm not left shattered (tad dramatic I know, but that horrible feeling you get in your stomach, that's what I'd get when I was told I wasn't going home that day). The nurse came in to inform what time the Doctor will be calling so I got straight on the phone to my mum and sister who are already on their way.

They get here and the Dr and his team come in and he asks me the usual questions and I keep giving him the same answers. 'What do you want?' he asks, 'I think it's evident, it always has been' and he laughed and admitted he wasn't surprised to hear me say that. He asked the family to see if they were comfortable with it. Of course, they were and then he said the words; 'We'll get you discharged then'. I'd already had my bags packed and was ready to go but it wasn't as straight forward as that, at the earliest I'd be leaving tomorrow and he needed to get the results of the EEG before I was officially discharged. Complete FML I thought to myself, this was surely torture. I've finally been told I'm being discharged but I've just got to follow the discharge procedure. I thought that's what I'd been doing all these effin weeks. Grrr!

Next morning, the results came back from the EEG which confirmed that whilst I didn't have epilepsy, I was at high risk of possibly having another stroke in the next 6 months because of the trauma to the activity in the brain as result of the stroke. So, I was sort of out the woods or whatever that saying is. I've got to be going home now surely? Oh no, there was some kind of delay with getting the correct medication for me to leave with so my wait was prolonged. Eurghhhhhh.

Finally hours later, discharge letter in tow and all the needed medication in my bag it was time for me to get the hell out of there. It felt like I was dreaming but I finally did it. Six weeks later and I was out and whilst I wasn't 100% recovered, I was making the necessary steps forward to getting there and being home was definitely going to help that if not physically, definitely mentally.

What friend's are for :)

Monday and I've got two days until the 'possible' discharge. I've been on my best behaviour (ish) all week and don't even really look like I've had a stroke anymore except for the flacid arm. I had movement in the hand but was unable to lift the arm yet.

I hadn't seen Gav in almost 2 weeks now and was really missing him and was venting a lot of my frustrations on him. Part of me was worried that he'd see sense and find himself a better girl with two arms and legs that worked. Thankfully though Nat came to my rescue, she could see I was upset and frustrated with everything, especially Gav so she came over and we went for fish and chips in the park. The nice nurse let me go plus Nat's a nurse so if anything was to happen I was in the best hands. It was nice to just chat and vent about everything because Nat's the kind of person who sees the good in people so it was good for her to remind me that it's a tough time for everyone involved and that Gav not being around much was down to his hectic schedule and nothing against me. That made me see that this whole thing wasn't just hard for me to deal with but for those around me too.

Anyway, after saving me from the dog off the leash, Nat took me back to the hospital and headed off. Kiran was there waiting with food and drinks and fresh clothes and my day just got even better, she was telling me how much I'd improved and that she reckons I'll be out tomorrow, I wasn't as confident though because everytime I built the excitement up, it'd come crashing down with the realisation that I'd be stuck in these dreaded four walls for at least another week. That night I was eager to get to bed just so that I when I'd next wake up it'd be ward round day y and then I'd be put out my misery once and for all...

Can I go yet? Pleaseeeee?

Things were on the up, my leg was far more aligned and the feldenkrais was definitely helping the arm improvements and now I was starting to get more movement in my fingers, I was able to move them slightly, there was a glitch though. Instead of moving on their own, I was only able to move them altogether. It was a start though, so I was very happy with that. And with all this positive progress, I just hope they would give me the answer I wanted on the ward round and that'd I be allowed to go home forever.

And yep, you guessed it, no such luck for me. I was deflated from this news because I was really expecting to be discharged this week. Even the physio's were confident of it. I was begining to tire of this weekly disappointment and requested to speak to the doctor and informed him that I wanted to discharge myself. He informed me that a patient cannot discharge themselves in rehab because they aren't discharged until a Doctor agrees to it. They said they would review my case and come back to me in the afternoon.

He came back at lunch but didn't give the new I had craved for so long, all he could do is look at 'possibly' discharging me next week. As you'll have probably guessed, I wasn't pleased. And from then on I only went to my physio sessions and my ot sessions, and just remained in my miserablr state. So the countdown begun on the next 6 days.

Stimulators aka magic!

 

So today, there was more noticeable improvements with my arm, with the stimulators on I was able to clench on to a ball and release. This was definitely a progressive step forward and physio's told me I just had to continue trying to bring back the feeling and movement as much as we could. I was nowhere near bench pressing standards but I was getting there and was a step in the right direction. Thank you werid stimulator machine thingy :)

Roll on the weekend

Gav came to pick me up and I was just grateful to be out of this place. He was shocked that I didn't need the wheelchair anymore and that I was independently mobile, he'd missed a lot in six days, and off we walked off the hospital grounds. When we eventually got to home, it was so good, I assumed my normal place on the settee, gav was giving all the head rubs in the world and mum was spoiling me with food and drink and fussing over me. It just felt so good to be home, I went upstairs to my bed and Gav soon followed after and it just felt so nice to be in my own bed, with my pillows and my cushions and my boy. He just cuddled me for ages and I'd fallen asleep, I was so comfortable and relaxed for the first time in a long while. I wanted to hold on to this feeling and just bottle it up so that I could take it with me when I was feeling rubbish at the hospital.

On Sunday though, I was just constantly checking the time because I knew that at I'd have to leave at 5 to get back in time for 6. I wasn't able to enjoy today as much because of this and sure enough at 4:30am when Mum had started to pack up all my stuff I bawled my eyes out. 'Can't I just stay' I asked, my sister just gave me the biggest hug and said she'd promise to help get me out of there as soon as because I'd demonstrated that the adjustment can be dealt with without too much trouble. That night I got back to my room and didn't even bother doing anything, I just went to bed at 6 holding onto the lovely memories I'd had with Gav, Kiran, and Mum, hoping that the next week would be the last week that I 'd be there.

Sandy bubble!

Got my bubble bursted by the idiot nurse on the weekend. Fuelled with anger and hatred, I pushed myself into my physio, I told them how I was feeling. That the odd one or two nurses on the ward with power trips were incredibly patronising and condescending and that they were taking away any independency I felt I was gaining. I informed them that my mental and physical well being was being affected as I was constantly left feeling demoralised by these certain members of unsupportive staff. There was also the Dr who I first met that was wildly reluctant to let me have any overnight weekend stays at home. Enough was enough though, and I just let it out in my physio session on Monday. They distracted me by giving me more excercises to do whilst discussing what they felt was best for me to do next, they tried to reassure me that I just needed to concentrate on the positives and not let those negative things impact my recovery.

After their meetings on Tuesday, they informed me that I might be having a weekend visit home but that I needed to complete a few tests and the OT and Physio would have to go home to carry out some observations to put in place any amendments that needed to be made and that was booked in for Thursday, so I was going home (breifly) in 2 days - Mega WIN! So, I managed to complete task one which was stepping down from one step and then walking around in the outside area adjacent to the physio gym, then secondly I had to combat climbing up and down a flight of stairs. I was really nervous about this and was worried that I wouldn't be able to do it. So, I took my first step up starting with my weaker foot, then I had to manage the elevation of being up on the slant with only a rail for support, and I just kept going and going and before I knew it, I was at the top of the stairs, and I was so confident that I didn't take much of a wait before battling going down them. I was so pleased with my achievements and how happy the physio's were for me really touched me too. They trusted that I was able to do it and helped me lock into that confidence that I had hidden away, I just wanted it to be Thursday now.

Thursday morning and Jenny and Alex come to collect me, I've text mum to let her know we're on our way and they bring the wheelchair out ready for me to sit in but now I was starting to walk a few steps without being shakey, I wanted to walk there myself. They reluctantly agreed but made sure they held on to my arms to support me whil I was walking and they still packed a wheelchair in the mini minibus/van thingy they were transported me in. Once we arrived to outside my house, I could see the door and my car and I was just over excited that I didn't even wait once they helped me out the van, I just started walking ahead and took the step up to get into the house, they were impressed and so was I, it took me a while but I did it and without any assistance.

Next, was to walk around the house go up and down the stairs, seeing if I could reach my bed and looking at whether I could manage getting clothes out of my wardrobe and whether I could get into the bath. Here they identified that I would experience some trouble and so they installed a board so that I could use to help transfer myself in and out of the bath independently. Everything was looking positive and it was confirmed that I'd be allowed home for the weekend.

It's Saturdayyy!

I got up so early morning and was sat ready waiting to be picked up from about 8am. My visit wasn't until Midday so I had a rather long wait ahead of me, it was a miserable day and looked really cold but I wasn't bothered, I was going out, and not like out in the patient transport van to new cross, I was going out for a few hours with the boy. It'd been so long since I'd had time with just Gav and was good to finally get some alone time with him. He's the kind of boy that I can talk about the silliest of things and he doesn't look at me like what the hell are you talking about, instead he carries it on and the conversation is taken to some warped land of L-O-L's. And I was due for a good session of being silly, I was texting him to make sure he was up and on his way, he was and he was just as excited as me so 12pm couldn't come quick enough.

With the spare time I had on my hands I decided to take a tour of the ward in my chair. It was such a surreal experience, there were so many people in here that I didn't even realise were here because they were so severely immobilised that they were unable to move around independently in a chair, some couldn't speak and so their only means of communication with others is through pen and paper and I had an overwhelming feeling of guilt, I had a reality check. I mean, I was lucky compared to these other patients, at least I could talk and at least I could feel a hug and at least I had my memory of who my loved ones were. I couldn't imagine how lost I'd feel if I had to go through that because I was struggling trying to rediscover my body, but my life on top of that. I really admired the drive in those patients and their families that whenever I was feeling sorry for myself I reminded myself of how happy and jovial others were, in particular a patient called Andy who would always be humming 'Let Me Entertain You' despite his speech having been affected, and that would make me smile seeing that he was being so happy and positive about stuff influenced me to be more positive and see the bigger picture, because sometimes you can get so lost in yourself that you lose touch with others and I think I had the tendency to think it was only me 'suffering' like this when it reality I could've been much worse.

Gav came and I noticed the manual wheelchair in my room had been taken out, the nurses had set it up and gav helped transfer me in it. I was a little anxious about going out in the wheelchair because all I'd focused on was the excitement of being out in my hometown, I hadn't for one second thought about how I would feel being faced in public in the chair. And suddenly all my excitement had turned to panic, and I didn't quite know how to deal with my emotions. It was too late though because Gav was already pushing me out the door. This felt weird, I mean usually when we're out Gav's telling me to slow down and now I was being facilitated by him in this chair. He tried to make me laugh and made light of the situation by joking I was heavy, but I was too distracted by watching everyone else in the street to see if they were watching me or not. There were a few stares but not the hoards of pointing and laughter that I had imagined up in  my head.

So, we headed to the fair but encountered some problems, with the weather being bad previously the grass was all wet and slippy and muddy which meant accessing the fair close up was going to be tricky, I didn't really want to be left alone while Gav went in to get candy floss for me due to fear of being eaten by a dog (It could happen) and then I wasn't going to be able to go on the rides anyway, another thing I didn't really consider when making my plans but who cares, I got to go to the fair so that was a win. Rather than just admit defeat and head back to the hospital I managed to persuade Gav to take me to Asda which was literally across the road from the fair. He wasn't happy about it but we went anyway. We were going to have some food at the cafe but there wasn't anything I fancied so I suggested we go on to town, again that was virtually another five minutes away so we were only ten minutes away and it wasn't like I was going mount boarding or anything. I just wanted to keep going because I was having fun.

We got to the shopping centre and went round a few places and bumped into people who asked what happened, and after those awkward encounters we went straight to ditsch. I went for my usual Margherita with Jalapeno peppers, but eating it was a bit tricky so in the middle of town gav had to help feed me. Bit of a low blow, but I think it was good for me to get over my inhibitions about the whole thing because I wasn't making no miracle overnight recovery and Gav didn't have a problem with feeding me so just shut up and eat the pizza, it tastes bloody good. I guess that's what a month of hospital food does for you.

Time was getting on though and it was just after 3:30pm, I should've been back at NRU by 3. Gav was panicked and so we headed straight back. Naturally the nurse was a complete prick and I was just so absolutely annoyed that such a good day had been ruined by a cock of a nurse who thinks that she has a bit of power so has let it get to her head. She mentioned that it was irresponsible that I'd gone to town and that she'd be telling the Doctor on Monday, 'tell him' I said in an incredibly childish matter. I called my mum and asked that she come and take me from the hospital but she explained that it didn't work like that. And so, I was left a stroppy sandy after such a good day with Gav and the witch of a nurse was no.1 on my dislike list.

Stupid, stupid effin arm

Now that my movement was going from strength to strength, there was still one thing that hadn't shown many signs of improvements throughout my rehabilitation, and that was my arm. I was getting nothing back from it unless it was through the help of stimulators, and it's not like I could carry those around with me 24/7 because it just didn't work like that. I couldn't understand why my arm wasn't responding to me. I tried all the exercises, I was constantly massaging it, even my Mum was at it on her visits and Kiran and Gav.

It's funny because when this all began, all I kept saying was as long as I'll be able to walk and that I didn't care if nothing else returned. Well, I was a big fat liar, because I had my movement back but somehow that wasn't enough, I wanted to restore my body back to before this happened. I was determined that if it was possible for the feeling and movement in my leg to return it had to be possible for the same in my arm. The ever repetitive 'take each day as it comes' from doctors, nurses, everyone was ringing in my ear so hard that I just had to trust that I was doing the right thing and that I shouldn't give up. I shared my concerns with my OT Alex, and she gave me so many helpful hints and tips. She informed me that just trying to get the arm to move wasn't enough, I had to incorporate my left arm and hand back into my daily routing, like trying to rest the toothbrush in my left hand whilst putting on toothpaste, instead of battling with keeping it balance on my lap. She also told me to place things in my hand a lot more, so when I was applying moisturiser, I was holding the tub/bottle in my hand. After a few days of identifying my arm and hand in my normal routine, I started to see flickers in my wrist and started to feel more but was still sensitive to hot and cold.

I think calling my arm/hand 'the arm/hand' wasn't helping because psychologically I was detaching myself from 'it' and for anything to return in my arm/hand I had to acknowledge that this was a deformation in my body and only then was I able to move forward from there. My boyfriend had been doing his research and was constantly telling me off for calling my arm, 'it', 'fucking stupid arm', 'crap arm' and the list continues. He'd been to see his phd supervisor who had taught him some feldenkrais exercises, so now on his visits he was conducting these exercises on me. It was an odd feeling to begin with but a few exercises in and I was starting to get the urge to resist the maipulation of my arm. Now physically, it wasn't happening but mentally it was and that tapping into my neurological helped trigger the return (slow train style) of my wonderful arm.

Ward Round Bouef!

So, ward round today and to my dismay I wasn't being allowed to have an overnight stay at all. Naturally, I had my usual Sandy-sized tantrum and gave Dr Aung the puppy dog's with plenty of these > :(((((((( ... and reluctantly he gave in and compromised by allowing me to have a day out to the park, but that it was only for 2-3 hours. Still. though, it was all I had so I grabbed the opportunity with both hands. I got my rubbish cracked phone out and text Gav, he was just as excited as I was. I called my sister too and she was also thrilled as she knew how much I wanted to get out of that place.

Only 3 days until my pass card out of here (well...one day pass card) so I was super pumped. I was ready to give it my everything in my physio and ot sessions (not that I wasn't already). Nothing could knock me down, I felt a sudden burst of recognition of my identity, the prospect of being in familiar settings had brought back memories that I'd blocked out either voluntary or not I don't know. I was just writing lists of everything I wanted to do I was that caught up in the moment, I just had to keep reminding myself that I wasn't going to able to attend a company movement class or go to the cinemas on top of everything else in three hours...UNLESS, I had Bernard's watch, but who was I kidding, so I changed that list to 'things I'm going to do when I get better and out of this hell hole' and devised a new plan for 'things to do on sat', there was a fair on so obviously the big kid in put that at no.1.

The physio's noticed a complete transformation in my attitude through both my body language and my voice, I was upright and super confident, I was smiling more than I ever have done in that place. They soon found a way to combat my sudden bout of cockiness with some tricky tasks. I was in my element, I was taking step after step and I wasn't needing to use the beams either, parts of my steps were jittery and I was losing balance but my physio assured me that I needed to make those mistakes because then I'd know how not to do it. So, I found myself pushing  this infantile body and recognising the mistakes of the dispositions in my body. I learnt that aligning the left side of my hip to match the right side helped get rid of that rock unbalancing, jerky walk going on. Then, the knee; I had a habit of being lazy with it and just dragging it, but I didn't manage to get away with that for long, 'straighten the knee, straighten, straighten' said Jill. It was helping but it was flipping hard work, I was yawning mid walk and they were sensing I was tiring so they sent me off to lunch early to recharge for the afternoon session.