Newbie Alert!

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Hello everybody; I’m a Newbie to this forum; so just wanted to say hello to everyone and share my story and tell you a little bit about myself

I am currently 56 years old and had my stroke in July 2022, unfortunately it was quite a major one and I was in intense care for a long period of time; despite he initial prognosis; I managed to hang on and survive despite having a bleed on the brain when the surgeons tried to put a stent in an artery my head; as a result of this I had a craniotomy which has left me with an irregular shaped head

I have been left immobile in the left hand side of my body

I am currently living in Barnet with my fantastic wife, Tess and our over enthusiastic Labrador, Ziggy

Since my stroke; I have learnt to walk with a quad stick for short distances but haven’t been able to regain any use of my arm!

Before my stroke I loved attending live sport and music gigs

In term of sport, I still watch on TV and my wife did take me to see our local non League team (Potters Bar) play last weekend. The team I actually support who I started watching when I was 7 are Luton Town; my second favourite sport is American Football where I support the New England Patriots

In terms of Music; my taste is very Eclectic with my favourite band being Marillion who I must have seen live over1 100 times, I also have a soft spot for the Niche Uk band Half Man Half Biscuit

Let me know your favourite music artists and ANY GOOD ALBUM recommendations would be gratefully received

I look forward to being an active member of this community and getting to know everyone a bit better

Any NFl fans out there, drop me a line with your thoughts for the upcoming season.

Finally; before my stroke, I used to be a video gamer; I have tried to get back into this post stroke but have struggled with the controller only having one hand, I have tried the Sony PS accessible controller but found it difficult to set up and confusing to use: if others have had similar experiences I would be delighted to hear about any potential solutions or games that can be played with one hand (I was wondering whether RPGs might work?)

Thanks for reading and I look forward to connecting with some of you who have read my message.

If you have any questions or queries then just let me know.

Best wishes, Jon

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@jonnyDee , love Marillion. Also, the lead singer who went solo (can’t remember his name). I too am a video gamer, have been for years (30+ yrs in fact). Even though I haven’t had a stroke, I helped care for a few family friends of my mum’s (RIP) who have had it. If you need advice, ask. :slightly_smiling_face:

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Welcome to the forum. I bet you never expected to join this sort of group.

My favourite band is the Rolling Stones who I have seen twice.

Like you I have no use of my left arm. I can walk around the house and garden, but outside I use a powerchair.

I live on my own so if I want anything doing I have to do it. so I drive, cook, garden. Any tips on being one handed please ask.

Janet

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@jonnyDee @Janetb

We have a Whatsapp group of a few folk from this forum. It’s informal, friendly and relaxed.
I can message you a link if you’d like to take a look. No commitment required.

keep on keepin on
:writing_hand: :grin: :+1:

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@jonnyDee @Janetb

Perhaps we should start a one armed gang.

I’m right side disabled, can totter about the house but need my perching stool. I drive a modified vehicle and have an electric scooter.

As I said somewhere else stroke disability can be a very expensive hobby.

After four years since stroke I have small improvements in my right arm and hand but am a long way from full use.

I was 79 yesterday. Getting younger every day.
I think those improvements have come from continually attempting to use the sleeping limb. The rewards are tiny but it does help me feel I’m going somewhere.

best wishes from an old pirate and bandit.
:parrot: :smiley: :pirate_flag:

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I can’t comment on the sports as the only sport I like is Robot Wars :joy::robot::mechanical_arm: However, gaming is a past time of mine. A way to unwind, meditate and stimulate. I’m a Nintendo guy but would suggest having a look at keypads or compact keyboards for the PS, that way you should be able to play games with simpler gameplay using keyboard combinations. I used to play RPG games before stroke but after found the detailed gameplay to be a challenge, as I struggle to grasp information patterns but they would be a great mental workout. I would suggest point-and-click games as they have great stories and plenty of humour, games like Monkey Island, Deponia, Leisure Suit Larry, Machinarium, Day of the Tentacle &c. These sorts of games should be very doable with a keypad. Stealth games would also work well with a keypad as they don’t usually feature combat and are primarily puzzle and platform based.

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Hi @JohnnyBoy81, thanks for taking the time to reply

Sounds like we have been gaming for a similar period of time; I can still remember when my parents bought an Atari console home with them one day, the days I spent playing Space Invaders, PacMan and Asteriods to nagfme a few; I. Then graduated to a ZX spectrum before getting the first PlayStation and then upgrading each time a new version was released

What sort of games do you enjoy playing?

I think the name that you’re thinking of is Fish

What’s your favourite MarillIon album? Do you listen to both pre and post fish MarillIon albums or is it just the earlier stuff that you’re into?

Last month, my wife took me to see Stillmarillion; a MarillIon tribute band who only do the fish era material, they were fantastic and I’d recommend them if they ever play at a venue close to you

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A belated happy birthday for yesterday Bobbi
Hope you had a lovely day :slight_smile:

:pray:

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Hello Jon. A very warm welcome to the forum. I am sure this community will be enriched by having you as a member.

We look forward to your contributions (no obligations) :slight_smile:

It looks like you’ve done really well from a difficult start post-stroke which is to be commended.

I think your wife and Ziggy the Labrador will likely have been a huge part in your rehab progress and it is so nice to have such wonderful support.

Wishing you all the best.

Namaste|
:pray:

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@jonnyDee Hi & welcome to the community. Sounds like you have come a long way since your major stroke. Many people find getting use of their arm back really difficult. I was a couple of years younger than you when I had my stroke and still have a mostly useless left leg but fortunately regaind use of my arm. My stroke was less severe than yours.

You’ll find this community a friendly place to be with people happy to offer their experiences.

I have no experience of gaming although do remember the zx spectrum. We all ghougb we’d made it when we had one of those. Hasn’t gaming & technology come a long way since then.

If I had a favourite band I would say the Beautiful South but I like all sorts of music.

Best wishes

Ann

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Hi @jonnyDee

Welcome to the community, I’m sorry to hear about your stroke.

It sounds like you’ve got a great support network with Tess and Ziggy which I’m sure will have helped you with your recovery. It sounds like you’ve done really well and I hope you’ll find this community helpful for your continued recovery.

I’m afraid I can’t help on the gaming or American football front! I do like my music though and I am partial to a good gig, some of my favourites have been Sleep Token, The Mission and Peter Hook and The Light. :slight_smile:

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

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Hi Jon, welcome to the forum!

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Thanks @ManjiB for your message; I am going to fully participate in the discussions on this forum

Thanks also for your words of support; you are right, my wife has been fantastic and has gone above and beyond in providing love and care to me since I’ve returned home and I am aware how much my stroke has impacted on her

Ziggy has also been fantastic walking me round to bed each night and then pulling off my socks ( and sometimes having a little nibble of my toes!before I get into bed

if you don’t mind me asking, what brings you to this forum?

Best Wishes

Jon

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Sorry @ManjiB I think I’ve had some teething difficulties with this forum and sent you a response meant for someone else; it’s not an issue but thought you might be wondering about some of the random thoughts in my response

Anyway, thanks for your message and I hope you are well

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Hi @jonnyDee welcome to our community I hope you will find this a useful place to be. We are a merry band of stroke survivors and their carers and families and there is always someone here to offer information or advice.

I was 57 when I suffered a hemorrhagic stroke 9 years ago, which paralysed my left side. I walk with a stick outdoors and potter around at home unaided but like you I have not regained the use of my left arm or hand. My husband has been amazing and is my full-time carer.

It sounds like you’ve made good progress so far and with your wife’s love and support I’m sure you will continue to make progress as your long and sometimes difficult road to recovery continues.

I would say one thing, a supportive partner is amazing but at times things will get tough, so be patient and be kind to one another.

I look forward to hearing from you as your road to recovery continues.

Regards Sue

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No problem @jonnyDee - I am not sure who you meant to reply to, but I am sure your intended recipient will have seen your response and recognised as meant for them. Most people who participate on this forum are avid readers and so will get your message.

It is not unusual for me to have the odd “fat finger trouble” (not suggesting you’ve got fat fingers :slight_smile: ) and so we don’t usually worry about typos, grammar etc. etc.

In case you might want to note, one thing that some members do mention is use of plain English and also some members like short and sharp messages. I personally somehow always manage to waffle on and end up posting large messages.

That said, this forum has got a wonderful mix of members and I expect most are satisfied with how this forum serves them :slight_smile:

Takes care.

:pray:

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Hi @Janetb

It’s lonely to hear from you

I’d be up to be part of of a one armed gang! just as long as things didn’t get physical as I’m not sure I’d be much use!

I’d love to join the WhatsApp group

The Rolling Stones are amazing and I prefer them to the Beatles; in fact my phone ringtone used to be Paint it Black; one of my top ten songs of all time

I’ve only seen them once and they were brilliant

Unfortunately I can’t drive now as I lost part of the vision in my left eye following the stroke

It’s hard on my wife as she now has to drive everywhere where as, pre stroke, I used to do all the driving

I’m interested to hear about your arm as despite lots of physio I still have no movement in my right arm

Do you have any exercises that you’d recommend?

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Best gig I went to was the Kinks. They played a large hall with a small audience. So they called us all down to the area by the stage where we bopped. Ray Davies sang Alcohol while balancing a pint on his head. That was also my brother’s party trick when we went to clubs.

I have no movement in my left arm so can’t help with excercises. Luckily I kept the use of my dominant hand. I do though have a lot of expertise in doing things one handed including knitting; putting up shelves; shoelaces; driving.

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Hi and welcome @jonnyDee, I’m at the lucky end of stroke and escaped unscathed hope your recovery continues well. I’m a keen gig goer but this has been curtailed a wee bit but feeling ready to be back out there.Tomorrow is my first in 18 months and going to see The Scratch - see here https://linktr.ee/TheScratch and hoping it’s the start of many more .

On the Marrilion front once served Derick Dick-Fish coffee on the train from Edinburgh to Inverness a decent guy unlike so many celebs we had at the time, Been lucky in so many ways seen Patti Smith with another 100 or so people- blew my mind, The Pretenders just before my stroke.

NFL team wise Packers just as first team I saw on C4 in the 80’s.

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Welcome to the community, @jonnyDee. You’ve already stimulated a lively discussion, you’re going to have a great time here. HMHB have been one of my favourite bands ever since I heard Sealclubbing on John Peel’s show late one night.

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