A long story - searching for simaliarities

Hi everyone. I had a stroke ~(a subarachnoid haemorrhage (SAH) 35 years ago when I was 28. It took me 4 years to learn to walk again, with a stick and I never regained the use of my right arm/hand - I was right-handed. I went back to employment for 22 years. I took early retirement in 2011 - since then my mobility has gone backwards and I suffer greatly from fatigue. I'd really like to contact people who have had many of the difficulties associated with SAH - but like me, many years ago. Last year I was told by a consultant that I'm very lucky to be alive as surgery for SAH was in it's infancy way back in the early 1980's. So, if there is anyone out there who has survived a SAH in the past 15+ years I'd be very grateful to contact you! Susi

Hi Susi. ..so,although I'm not a survivor of SAH, as a 'long-term' survivor of major stroke in 2011, your post truly resonated with me...I have read between the lines of 'your long story' of a young woman who got 'taken out' by a truly, traumatic event, but fought back to walk and work again and who, is still, 3 plus, decades on, still reaching out, and trying to help herself...inspirational. ...respect to you... and I hope you get all the responses from SAH survivors your brave post deserves. ...respect...


Thanks Christian. SAH is just one form of stroke. As a survivor of stroke for 8 years you must have fought many battles yourself. Just keep a positive attitude to life and things get....not easier, but you find your way round problems.


...Yeh!...my stroke was different to yours...it was caused by a dissection of my right side carotid artery,so classed as ischemic, I was 51...60 now and still pushing for further physical /psychological gains...it been a very long,  challenging , and rewarding 'war of attrition'...I still focused 100 percent on my recovery and have found participating in stroke rehabilitation clinical trials a very worthwhile use of my post stroke years as it keeps me close to the latest thinking, ideas and cutting edge technology...with this in mind I would direct you towards Prof. Nick Wards, UCL,National hospital for Neurology (Queen Square), three week upper limb course...I completed in 2016 and gained from this ...respect Susi....


I hada burst aneurysm 29 years ago stage 32.I lost the use of my left arm, but I am righthanded.I can walk short distances, but use a powerchair (funded by ATW) when out. Like you I returned to work (part-time). Like you I was lucky to survive as the aneurysm was triggered by a near-drowning and I was in a coma by the time I was rescued from the sea.

Good to talk to you Janet and to find out there is someone out there who has probably had a similar life to me! I went back to work in the Disability sector, around the time you had your aneurysm, and then to local government. My mobility scooter was funded by ATW. I loved working and miss it. Are you still working? If so, what do you do? I worked in the access field eventually becoming an access officer. Nowadays I sit at my computer so much so the little mobility I regained is decreasing. Apart from going back to employment I think at this stage of my life I've run out of ideas of how to get back my mobility/posture. Any ideas would be appreciated!

Thanks Christian, the stroke I had resulted in no movement at all in the right side of my body. Regarding my arm, after 8 months intensive physio at the Wolfsen Centre in London (we were in-patients in those days!) there was zero response in my affected arm. I may write to Nick Wards, but I very much doubt that after 35 years I'd be deemed as a suitable candidate!

I think I can summarise my life as a disabled person as: First 10/12 years I tried any treatment that was out there, including some very wacky ideas. The middle 10/12 years I wholeheartedly accected my disability and concentrated on work (I worked in the access field eventually becoming a local govt access officer). Final third of my life has been a very slow downward trend - the little mobility I'd regained was ceasing up, along with my depleated energy levels.

As you are 9 years post stroke I'd say always keep up with your exercises, or like me, what you have regained can so easily be lost.

I am an mathematician turned engineer. I work in radar  research. I think the best thing for mobility is to keep moving.


Yes, I share your thought. One of my mantras ever since I was in hospital for 6 weeks in 2017 and until now is "Every movement counts." Especially when I am feeling frustrated, even just moving those fingers and those toes will do. ☺

Hi Susi - I didn't have the same as you so forgive the lack of knowledge about SAH.  You were indeed very lucky.  I'm not sure if it would help with your mobility but do you have a rehabilitation gym near you?  I have suffered with fatigue since my stroke and also numbness in my non-stroke leg which made walking difficult for best part of a year. I joined a rehabilitation gym which helps people with mobility issues and are specialists in stroke, spinal and other issues. I am now five weeks into my programme and I find I have much more energy now. I can walk without the dreaded fatigue setting in and have managed to say goodbye to my afternoon bed rest - (she says with fingers crossed!)  They have been a great help for me. 

Hi Susi, I had a subarachnoid hemorrhage in April this year but I was really lucky as had no loss of mobility, I have lost the peripheral vision in the bottom right hand corner of my right eye but that's it. I'm due to see my consultant on Thursday for the first time since it happened so not sure what answers he'll have. I'm really hoping to get back to work but that all depends on whether I can reapply for my driving licence. I find walking my dogs has really improved my stamina. Take care x


Thanks for this. I'd tried various physio sessions over the years, apart from being very expensive there was hardly any change in my abilities. The neuro NHS physio's don't want to know as I am 35 years plus post stroke. However, I've recently moved to a new area and different health authority so I will investigate what is out there. Thanks again.

Hi Kati - the treatment these days for SAH is marvellous compared to the 1980's. I am, as you'd assume, severly disabled. So, if it's any consolation I went back to driving, albeit in an adapted car....and I'm still driving 30 years on. i had to re-take the vision part of the driving test only, although I also had several refresher lessons in a car with suitable adaptations for me. Good luck with getting back to work. x