Physiotherapy Decision - Stroke Survivor Perspective/Dilema

Life after stroke
1

This post is to get you to imagine yourself in the position of a hypothetical stroke survivor based on a real-life stroke survivor and to make a decision as to whether or not you would look to taking on some physical activity assisted by a professional physiotherapist to improve the quality of your life.

Major/Key considerations

  • You are in your mid-90s
  • You have been physically inactive for over five years
  • Physical activity may or may not improve the quality of your life

Situation

  • You survived a massive ischemic stroke that left you right side paralysed and aphasiac (non-verbal, but make sounds which indicate mood, comfort level etc).
  • You were not expected to live and even if you did your quality of life was not going to be much. Essentially bed bound needing double-up care.
  • You refused to give up and managed to get discharged to supported home care (double-up carers 4x a day) and family providing additional care (or this might be the other way round, family carers with additional support from double-up agency carers)
  • You got no physio when it was needed and when it was given after much badgering, it was “too little, too late” which meant that you were not benefitting or realising the potential
  • You survived the covid lock-down when only family cared for you with agency care reduced to 3x a day
  • You continued to do your own thing, brain working away healing itself and your muscles did not deteriorate too much despite lack of physical activity
  • You have been pigeon-holed as “not likely to improve” and no help is given i.e. no physio and even your hospital does not want to see you because the hospital is a risky environment and you might pick up infections. Your GP and Community care team don’t have the “special skills/equipment” needed and so they will refer you to the hospital, only for the hospital to send you back (vicious circle)

It is widely known and accepted, we all benefit from physical activity. Physical health and mental health go hand in hand (at least that is what you believe).

Having been physically “inactive” for duration of your stroke recovery period, you would like to try one last time to become physically fitter and more active.

Question

Given the above, very hypothetical I know and maybe difficult to imagine, but do try anyway, would you want to engage a physio to put you on the path to physical fitness

OR

Would you accept, this is as good as it gets and just see out the rest of your days, whether that is one day, one year or maybe even ten years?

  • Would you take on a private physio therapist?
  • Yes - I would
  • No - I would not
  • I don’t know
0 voters

Thank you for reading and for your participation

3 Likes
2

@ManjiB This made very interesting/informative reading. Would only really be fully understood by a stroke survivor, but everyone could relate to it as may has a family member suffer in this way or a fiend. Makes you think about your own situation and makes you want to fight harder. I am unaware if you plagiarized from the Net or a book or if you created yourself. But it is very thought provoking in a good way.

3 Likes
3

I am a stroke survivor but luckily not in the same position as the person you describe. I was 20 years younger and had excellent physio from the hospital community physios. When they finished after 8 months I decided to pay a private physio which I still do. However I have very often felt that I just cant be bothered to do exercises and that yes this is as farbas it goes and I will just sit in my chair with my book! I am now hobbling around with a stick and a very dodgy left arm and leg. Luckily my speech was not affected and for the last 18 months have been driving locally.
However if I was in the position of the person you describe then yes I think I would just sit back and let the world go by. But that is how I feel now and its very difficult to imagine being in the situation you describe

4 Likes
4

The one thing I failed to appreciate @ManjiB was your mum/hypothetical person an active person pre-stroke if the answer is yes then absolutely get private physio.I couldn’t agree more there is a biological,spiritual etc. link between physical exercise and mental hygiene.the same goes for getting out into green spaces. My mental hygiene is and always has been closely related to how much walking I did and how much gardening I did.there’s something magical about putting your hands into soil!

3 Likes
5

It depends on the physio. If physio at that great age feels good then it is beneficial but if it promises something that may result in frustration then that could be detrimental. Physio takes time and if one wants to spend such time doing it, then it serves its purpose. One person may walk a hundred miles and achieve their desires, another may sit and read an entire book and achieve theirs. It’s subjective, I guess. If I was in my mid-nineties and physio was gentle, and pleasurable, then yes, I would succumb to it. If it was aimed at “improvement”, it may fill me with angst that I don’t want to have to struggle with, alongside everything else.

It’s an interesting hypothetical question. There was a stroke survivor on here from New Zealand, he was in his mid-nineties, @Deigh, he hasn’t posted in a while. He played guitar, I think? In his nineties he had to learn to get to grips with it again and also began driving again after stroke. He could offer good advice on this hypothetical but I haven’t seen his posts around for a few years.

4 Likes
6

I think I am in the same camp as @Rups. It is one of those questions I don’t think anyone can answer unless they are there.

I was only thinking about @Deigh the other day as spotted he hadn’t been around for a long while.

4 Likes
7

I wrote a lengthy reply to your mail yesterday but it seems to have disappeared. If I get a reply to this then I’ll repeat it.
Deigh

4 Likes
8

Hello @Deigh - Nice to meet you!

I am sure @Rups et al who remember you from days of old would be delighted to see your reply. I too am very interested to see what you have to say.

Look forward to hearing from you.

Namaste|
:pray:

2 Likes
9

Hi there Rups, Yes I’m still around, 95years old now and still trying to get guitar under control! Trouble is that Covid shut down peoples movements and I lost contact with many other players who used to call for sessions. I am playing with a small group of ukelele players just to keep my fingers moving.

Contact with other stroke groups I have also abandoned but meet other stroke survivors on a small chat group, other members are from Switzerland, USA, Canada and I’m the only one from NZ. I have to waken at a rediculous early morning 7am to be able join in chat!

I’m undergoing treatment for Lymphobia to make life more comfortable. The treatment itself is uncomfortable but should improve my walking.

Deigh

4 Likes
10

Lovely to hear from you Deigh, aye, 96 this year I believe, if my sums are correct. Not me, you. I thought you might have some wisdom on physio mid-nineties for @ManjiB - how is the weather in NZ? I listen to Reuters news daily which is broadcast from your part of the world. I loved my time in New Zealand, albeit, all too brief but a special memory. How are your musical interludes going? How is stroke rehabilitation going? Last I heard, you were back on the road.

3 Likes
11

First of all Irene, I am not sure if I should be flattered by your comments or not.

I am pleased you found it interesting/informative and thought provoking in a good way.

I am not entirely sure I know how to check if plagiarism has taken place or not. Also, now that you are asking the question, I have often wondered if anything we say or write these days is truly original and not plagiarised. This question often pops up in my head when I see musicians getting sued for copying songs. I think with a finite number of notes and chords, surely there are only so many original combinations you can come up with before you end up [inadvertently] repeating/creating something that has been done before.

So is this my original work, or have I seen it, read it somewhere and it has been in my subconscious and I have now shared it here without crediting the originator?

Very intriguing :slight_smile:

I might just start another poll here.
Has the “Physiotherapy Decision - Stroke Survivor Perspective/Dilemma” been plagiarised?

  • Yes - Plagiarised
  • No - An original
  • Don’t know
0 voters
2 Likes
12

Hi Michelle - Pre-stroke life of the hypothetical stroke survivor was a little like a few others on this forum:

  • Very healthy - took next to no medications and on no medications for 4/5 years prior the stroke
  • Biological age 30 years younger than chronological age
  • Very active physically - daily walks at least twice a day
  • Travelled by public transport/walked and carried own shopping
  • Very healthy diet
  • Never smoked and never drank alcohol
  • Mentally alert - happily held audiences, provided advice on any number of topics and able to draw on personal experiences
  • Illiterate - no reading or writing (in reality, minimal so could read write name, address, tot up bill at checkout etc but would take a while to read a newspaper story)
  • Little/no interest in TV / radio - much rather spend time chatting with whoever would talk and listen
  • Held religious/spiritual beliefs
  • A spade is always a spade!
  • Loved gardening and going to the parks

That’s quite a bit to start you off

And yes, if making the choice for self, it is a no brainer and physio would be the order of the day.

So there you have it!

2 Likes
13

Hi Ann and @Rups - so this is a hypothetical question and we are trying to put ourselves in the shoes of this person and asking Physio or No physio.

I have given a bit more info in response to Michelle’s @Mich-mm and this may or may not help you.

Either way, please don’t bother yourselves too much. It was something I wanted to put to the community to see what sort of a response I get and also, if they are able to put themselves in this situation how people feel about this.

This is like an exam question where you have to try to come up with an answer. I find first I need to read the question and then re-read it to see if I even understand it before I can try to answer it.

For me, this is a daily occurrence, not just about the physio but also about how much feed to give, how much water, how much time in the chair, how much time in the sun etc. etc.
When is it enough? When do you give more?

4 Likes
14

@manjib it was a compliment.
Sometimes you kust read spmething and it stops uou in your tracks and your story dud that to me.
So i was co.plimenting you on both the quality and sharing it.
I am scottish, so think diffrently, but it was a compliment.

2 Likes
15

Hypothetical or not, I like you and will respond with stuff :joy:

2 Likes
16

In that case @ManjiB your hypothetical person is very like me, my daughters arranged for me to have extra physio when i was at the rehab hospital because what was on offer, an hour a day wasn’t allowing me to progress. And now at the nursing home they’ve done the same with an organisation that someone on here recommended called INTENSE. I’m very excited about this as i have no core strength can’t sit upright on the edge of the bed without falling forward or to the side, I’ve got an awful lot to do if i want to be anything close to my pre-stroke self. I highly recommend a static bike for wheelchair users I’ve been cycling for the last two months and this miniscule amount of exercise brings me so much joy having been the type of person to walk around the block or through a local park. I personally would love to try swimming but i don’t know where or how!

2 Likes
17

Hey @IreneFC - thanks for the compliment. I was only teasing by the way - I sometimes like to take the subject on a different path and so throw in some curved balls. I like it when a conversation or topic takes an unexpected turn, which I felt happened here with your comment about plagiarism.

I hadn’t picked up on your Scottishness - I love the Scots. I worked very briefly in Aberdeen, Glasgow and Edinburgh and nearly got a job in Inverness (the famous Inverness grouse beaters) - Scotch whiskey - one of my favourite tipples.

Anyway, no doubt we will exchange views as you seem to have taken to this forum in much the same way as I did/have :slight_smile:

Rupert @Rups - Shwmae

That’s such a nice thing to say and I appreciate what you are doing always responding with stuff. I am not sure if you know this, and if I am not mistaken, you were one of the first, if not the very first person who replied to my very first post on this forum way back in the eleventh month of the year MMXXI.

You recommended two books (Have a read of Norman Doidge’s The Brain that Changes Itself, and also Peter G Levine’s Stronger After Stroke) both of which I borrowed from the library and had a read - both were/are very interesting and some of my decisions actions are based on these though mostly they stem from what my Mum taught me and what I think she herself would do. She is and remains one of the the most influential people in my life and I feel I have been blessed :slight_smile:

There were a couple of others including the famous SimonFromEdinburgh, Mahony and a lovely lady Loshy (Lorriane) all of who chipped in with their thoughts.

Long may our relationship continue :slight_smile:

Michelle @Mich-mm - I must say that from the very early contact I had with you, I did get the feeling there may be similarities with the hypothetical person (OHP) we are trying to help :slight_smile:

I note you are working with a PT organisation called InTense Physiotherapy and your experience with them has been very positive. This is an avenue I will likely follow-up as I have already checked their website and they look promising. My only caveat with this is there is a significant age difference between you and OHP (nearly 50 years)! I am not sure how you feel knowing that having much in common with OHP, you may live to be 100 years old.

Wrt your desire to swim, how about asking the InTense PT - I am sure they will know how you can go about this.

Thank you very much for your contributions.

All I can say is watch this space :slight_smile:

Thanks everyone for your continued support and being a source of inspiration :slight_smile:
:pray:

4 Likes
18

Yep, you got the age right, 96 on Haloween ! Weather here as unreliable as ever but a lot warmer than UK. According to figures it is wetter here than where you are but figures lie because al though more rain falls we get it in big bursts and you just stay out of it till it stops! Three day drizzle like you get in UK does not exist here and nobody owns a raincoat but everyone has an umbrella!
The coldest it gets up here in Auckland is light frost which clears when the sun comes up. The last time it snowed up here was 30 years ago when a few flakes fell on the highest point and the populace was in panic! You only have to go 50K North of here and you are in the winterless North where they never even have frosts!
The stroke chat group I meet with are at minit chat and are a part of the Strokeboard net, The main site is struggling with surviving as it badly need some technical help, The original writer died a few years ago and his widow kept the site going but her knowledge was limited and she seems to be out of contact.
Catch you again!
Deigh

4 Likes
19

Interestingly @Deigh we share the same spooky birthday i’m a little younger born in 1974-so I’m 50! But my brain hasn’t caught up with this! And I often think i’m still 30ish!

3 Likes
20

@ManjiB i too have enjoyed our exchanges and believe we are kindred spirits in many ways. Yes my first encounter with Intense was with a wonderful lady called Chadni, but i’ve been warned that this was for the initial assessment only and that it is unlikely i will see her again

3 Likes