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15 years on for my Aunt….

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My Aunt Daphne invited me over the other day. She had, had a Stroke when she was 60. Now she is 75.

We had literally just celebrated her 60th birthday and then she was going to have a nice holiday in South Africa with my Uncle Peter and Auntie Marie ( who lived out there)

She had only been there for about a week. Unfortunately, she woke up one night and had suffered a stroke (8th November 2003) They rushed her to hospital (as Peter had heard it ) and they did loads of tests to find out what was happening.

She had the left side partially paralysed, also there was loss of vision on one side but her speech was fine.

She was kept in the hospital in South Africa for 4 weeks and then flown home. Like I say the hospital nurses, doctors and the physios were just amazing.

On 29th November she got transferred to Canterbury Hospital and then on the 10th of December she got admitted to the Stroke Unit which she stayed until beginning of March 2014.

She didn’t have any speech therapy, like me, but there was a lot or retraining to do with her leg and arm.

When she came out she was told that she would have to go back and have a Carotid Endarterectomy.

Carotid endarterectomies are carried out when one or both carotid arteries become narrowed because of a build-up of fatty deposits (plaque).

This is known as carotid artery disease or carotid artery stenosis, (The carotid arteries are the main blood vessels that supply the head and neck) or Daphne’s way of putting it, was that it was like having a kettle fired up and it needed scraping off !!

I remember have a BBQ at my mums and Daphne have just come out of hospital and come up and we had to dress the wound 3 times a day – which I did at the time !

Over the next few years everything changed for Daphne. She lived on her own, so she had a shower fitted and a Stannah Stair Lift. She gave up work, unfortunately she gave up her car too. Her left arm although having Botox on it, it is functionally paralysed below the elbow. Her left leg has recovered a lot of it power, however she still walks with a stick to boost her confidence.

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Christmas 2015

The other day I went round and went to the pub for dinner and it was just so funny ! My right side doesn’t work the the moment and Daphnes left side doesn’t work either, so you imagine Daphne and myself getting in the car, in the front I might add. If anyone saw us they might think,  what is going on !

She used to have certain goals ( her friend Daphne used to work through them with her) She wanted to go up and down on the escalators ( I can’t ! at the moment…..) but that was one of her goals and she did it !!!

Unfortunatly 5 years ago, she broke her left elbow which was painfull to see the last. Then in 2013 the hip broke and then 2016 they replaced it – so all good !!

The only thing is, that she is paranoid abut falling over.

And the holidays…..

Cruise around the Caribean – 2009, Barbados – 2010

Cyprus – 2011, Poland – 2012

Scotland – 2017, Torquay – 2018

But the thing, that keeps her going, is that all the time she doesn’t feel sad about it.

She just keeps going, enjoying herself …..

Step out for Stroke

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In June, we did a Charity walk around Capstone Park – Step out for Stroke.

 

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There was lots of people there, it was great. People who have had a Stroke (and it didn’t matter how long they have had it for) and also their friend and families, to just walk and encourage them. It was approximately 3 times round the lake or just under a mile.IMG_1712

And the main thing was, everybody wanted to be there, didn’t matter how much or little that, that person did, everybody felt elated that they had achieved something.

 

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We all had a great time, raising money and awareness for Stroke.

MY STROKE OF LUCK

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This is from my friend Sharon, who is just amazing…..

A chain of events have led me to the place I am now in. In 2016, I had a job in pharmacuticals which I enjoyed and thought I would be there until I retired which was a good few years away. Then my husband became ill and retired early due to his health which made us think long and hard about our future.

We decided that mortgage free, stress free, countryside, slow pace of life in France was the ideal antidote to ill health, not without cost though as leaving our family was a hard decision to make. But we went ahead and paid the deposit on our dream home, I retired from work which left me feeling a bit lost for a while but our exciting adventure lay ahead of us.

I wanted to spend as much time with the family as possible so we went to stay with our son, his wife and our little grandson in Cambridgeshire. I had retired the week earlier, then at 04:03am on 23rd August 2016 my life changed dramatically. I woke needing to use the bathroom only to find I was stuck, I was very afraid as I had a pretty good idea of what was happening. I was unable call my husbands name properly although he woke quickly and sat me up. The look of fear on his face confirmed everything for me.

He asked me to raise my arms but only my right side obeyed the command, I had had a stroke. I was terrified however an overwhelming urge to use the bathroom was all absorbing so I was spared from my mind processing what was happening to me.

The ambulance arrived in minutes and I was taken to Kings Lynn stroke unit where a team were waiting for my arrival. After an immediate assessment it was decided that I wouldn’t benefit from Thrombolytic treatment. I received outstanding care in Kings Lynn the stroke ward is filled with some amazing people both staff and patients.

I watched the lady opposite me who got frustrated that she couldn’t read the paper or use her ipad or even remember the right words to use. For myself none of those things applied to me as my stroke occurred on the right side affecting me in more physical ways. My initial assessment gave me a score of zero. I was totally paralyzed on my left side, unable to swallow food without choking nor able to speak coherently, so my family tell me, probably explains why they gave me blank stares when I spoke. The extent of my disability was terrifying but I did feel so much luckier than some of the other patients. I will admit to feeling some pangs of envy when I saw patients much, much older than me walking to the bathroom, not only was walking out of the question but my bladder could only hold a thimbleful.

The physios were so patient, it took 4 of them to help me take my first steps, one of whom was on the floor lifting my foot for each step, I can’t describe the joy I felt the first time she said I had initiated a step on my own. I needed my husband and children to know that everything would be fine. I felt a tremendous amount of guilt that I had made them so sad. My husband was driving to and from Kent to make sure the house was ready for viewings to sell, and my daughters were driving up after work on Friday back to Kent again on Sunday, I know that seeing the children and my little grandson kept me from feeling sorry for myself, I’m sure one of the reasons I was allowed to go home so soon was the consultant knew I had massive support which would help with my recovery.

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Sharon and her daughter Sami

Once back in Kent the question everyone was asking was: What were we going to do about moving France? There was no doubt in my mind that a stroke was not going to hold us back from our dream. The Medway stroke team were massively supportive they tried to get me as far forward as they possibly could before leaving for our new lives. They came several times a week for physio, I was given a splint for my drop foot and a huge three pronged stick, suddenly I was free to walk to the downstairs cloakroom, I was on the mend. Every day I achieved something I hadn’t been able to do the day before. In the meantime our France purchase was moving on and we sold our Kent house which meant we lived in our caravan through November and most of December. Then just before Christmas we left for France, towing the caravan which was to be our home until we had a bedroom, bathroom and kitchen in our house. I wont pretend its been easy, it hasn’t. Particularly for my husband who had to do a lot for me in the beginning but I was determined to do as much as I could in the house to make it ours which has helped contribute to my recovery. I have found small things can spur me on, I wanted to sit on the grass by the pond with my grandson and throw acorns in the water so I learnt how to get onto the floor and up again, I hope he still wants to do it this summer. Also talking to my friend Kim, who had her stroke just before me, I find inspiring. She is now walking without her stick, I decided I wanted to reach the same point, I needed to build my strength and walk further each day, which I’m now doing.

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Some of my friends have said I’m unlucky to have only had a week of retirement before my stroke but I feel so lucky to be alive and having such a wonderful life. I’m learning French, My family come out and visit frequently and I’m not going out for walks with my husband and the dogs. I’ve still got a long road to full recovery, but I couldn’t be happier.

 

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Steps !

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So, I go  to meet Mitch each week for PT.  I had wanted to try getting my right foot inline with my left foot. In the two years it was getting better (but obviously I wanted more !) It would be nice to just go up or down the stairs an a normal way but it took ages each time I did it.

Also, one thing that was really annoying was the fact that on holiday for example, there weren’t any hand rail’s on the steps outside.  Here I kind of know which steps I can go down/up but sometimes I would just have to say ‘no’ or take the lift,  if that were the case. (before the stroke I used to run up and down these steps – sometimes 2 at a time !)

Anyway, Mitch had been thinking about how to do this, maybe going back to basics and came up with a simple ‘Step’ (I had spent along time doing Step classes throughout the years.

All of a sudden the dance moves came back to me (I am not saying literally lol ). But, I could see myself doing the arms and the legs movements and they wouldn’t go away.

At first I stepped on to the Step, balancing my left arm on the hand rail and then I  stepped on with my right.

 

He then made me do my left foot and then see what difference that made. Then, he said go with it on the right but try and use the left hand side to imagine what the right hand side would do.

 

It was good, already, the second video, was looking more straight on the right hand side.

Also, again we did the treadmill to see how that was going and again it was looking good, the right hand side was lifting up.

 

I know that it sounds silly but in focussing on these two things made a hole heap of difference. It may be in a few weeks time we will try something else – who knows, but in the meantime, these are the main focus (apart from everything else !!!)  Maybe at the time, it wasn’t right for me but suddenly it seemed that I could ‘just do it’ whereas my brain was saying ‘no’ before. It was slow small steps which took a long time, but I did it and it was only going to improve

Also I had been using the ‘Chest Press’ for quite some time.  I found that I put my right hand in it and then my left hand pulled forwards and out, so that each time it would just be the left hand doing it and then the right hand with the assistance of the left hand side.

However, the other day I thought I would give it a go, using 2 hands at the same time.

Actually, I couldn’t believe it, it was hard (as you can see below ) but I was just shocked  lol I could see a positive in that they both went out together and back.

 

 

I just need to pull it down and in from the elbow as you can see on the right hand side

So, all in all, this was a positive week, sometimes life does the same old, same old in terms of the gym, but sometimes the body and the brain kind of work together to make things come to life again.  ( Although there is a lot more to do yet – don’t worry lol).

 

RATULS Trial

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(Robot Assisted Training for the Upper Limb after Stroke)

The purpose of this research study is to determine the impact of using a rehabilitation robot (called “Robot Assistance Training” in this study) on upper limb function after first time stroke.

The study has 3 different groups which participants are randomised into:

A rehabilitation Robot which is a machine that assists with exercises. The arm affected by the Stroke is placed onto the robot arm which is connected to a computer. The computer screen displays games which are played by the robot arm. If you are unable to move the robot arm, the robot assists you to do this to complete the game. These sessions are completed 3x a week for 12 weeks, lasting approximately 45 minutes.

Enhanced upper limb therapy  – These sessions consists of practise of everyday activities using your arm affected by the stroke. A therapist will help you to choose activities that are important to you. You will be asked to practice each of your activities a number of times during a therapy session.

Usual Care – Participants receive the standard NHS rehabilitation.

At my screening assessment I completed lots of different tests, and was randomised to the usual care group.

I had to do arm rehabilitation (therapy logs) for 12 weeks to fill in every seven days.

Then I went up to Northwick Park Hospital on 17th March 2018 and had a 3 month research assessment.

We did the same tests again. We did Reflect Activity from the Fugl Meyer again. My arm has increased what it was doing by lifting it up to the right hand side, but again, it was frustrating as it went backwards but not forwards !! So, I must try harder lol.

Then I was given another 12 weeks to fill in every week and go back for another research assessment.

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Going abroad……

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In 2016, I was starting to get annoyed about going away (even though I had, had a Stroke)  I had always travelled :- Kenya, Egypt, Margarita, Florida, Goa etc etc I felt that I needed to go way but maybe not quite as far ‘at the moment’

Two years ago I went to Sicily for the 2nd time and in a way I could tell how what would work in the hotel and what needed adjusting.  And it seemed the easiest place to go back to.

I had always marched through the airport wherever I was going…..Now I had the term of a ‘Disabled Person’ and I will tell you something, I didn’t like it at all.  When I learned to drive again, I found it that I could have my freedom back.  But this was a kind of a bit weird, I seemed to be going backwards again….

We arrived at Gatwick and went to the Disabled Reception. I sat down in a wheelchair and we went to the checkin (up in a lift etc)  Then we put checked our luggage in, went through passport control, where the lady left us until the plane was ready for boarding.

Then we got put in an electric buggy and then taken to the gate where there was a lift to take us up to the plane and then we stepped on board. I had the end seat near the front  and everybody was really nice.

When we landed again I stepped of and sat down in the wheelchair and the lift came down to the ground. Again the man took us through passport and collected our luggage and took us outside for a taxi.  Everyone made everything really nice.

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Me in Sicilly