Thoughts for the newly affected

I had my stroke, now 6 months ago. Back from a relaxing holiday, went to sleep, woke up to right side paralysis and apparently (and luckily temporarily) speech problems. Age 58. Healthy, regular gym goer, non smoker, stupidly ignored warnings of potential blood pressure issues.

And now, I have one regret. I didn't write down my issues and progress.

I am reminded frequently by family when I feel down how far I have come, and if I had written stuff down I think it would have helped to be able to look back and go wow, I can do that now.

Typical example, I am trying to get back to the gym, I was bemoaning my ability to only just lift 2kg when I used to lift higher numbers with zeros on. My dear wife replied that 3 months ago we went out for lunch and I had to get her to cut my dinner up for me, I couldn't manage a knife and fork, so 2kg was a world away from those days.

I actually do write stuff down now, also because of short term memory issues too, but I think its going to be a great help going forward.

Maybe it will help you too!

Here's hoping. Because I actually find the dark moments harder than the non abled moments. I can try and regain function, and I can adapt to what doesn't return. But who doesn't have the odd dark time? Being able to self motivate would have been great, and now is. For me.

It's never too late to start!!  I still find it useful to look back at the log I kept for my husband, as he wasn't able to do that independently, and it's not really his sort of thing!  I think even if you started to keep a few notes now, you'd notice the difference in another 6/12/18 months - the journey continues.

Best of luck and hope you can manage to achieve those dreams, it sounds as though you have the determination - take care and keep posting ? 

Thank you for sharing your situation with us.

It is a good idea to keep a stroke diary. If you include your weight, Bp pulse and medication then it will be a useful memory aid in months to come.

I am determined not to fall in to depression. So I fight those dark days with every trick I can think of. Still the very best weapon is smiling. Amazing what a few smiles do for us.

I agree that the mental issues are far and away more difficult than physical impairments. No one seems to understand the mental stuff. Memory, stroke fatigue and so on are the true nightmares of stroke recovery.

You are positive and that counts for a lot.

Your pre stroke fitness pays big dividends during recovery. And probably ensured you survived when many do not.  Most of us seem to have been in decent shape with regards to weight, smoking, excess drinking and exercise. 

Do you get the tiredness (SF in my language) ? Is it improving ? 

best wishes

Colin

Thanks - determination or bloody mindedness, not sure which, but at least quitting isn't on the cards :)

Hi Colin. And nice (is that the right term?) to hear about similar situations.

Yes, tiredness is a real nuisance. I generally have to sleep during the day, if only a half hour, but struggle to go from waking to bed time without it. Not helped by the fact that despite being "fine" during the day, my arm spasms terribly at night, causing me to wake up with what I term "The Claw". Clenched hand, rigid bent arm. Although a recent change in physiotherapy has led to 2 nights without that in the last 2 weeks, so I am ever hopeful to eventually get past it.

Not sure how much of memory issues are stroke related per se, or just lack of sleep, but I actually got the stroke nurse to do an assessment, I was so concerned. Passed, with a small proviso re vocabulary recall issues - hilarious as I just spent 4 minutes trying to remember the word vocabulary, which prior to the event was excellent.

Totally agree re fitness - I have said all along my recovery was due to that and am determined to get as much back as possible.

Keep smiling, keep recovering! Send me a joke if you get a good one :)

Hi there. You are doing well for six months post stroke. I am three years on and also had spasms in the early stages of recovery....my leg and foot rather than my arm and hand. I learnt to live with them and eventually they faded away. I still get them very occasionally. They never worried me as I accepted them as my grain making new pathways.

I am also bloody minded and that really helps with recovery. After three years, my weak arm and hand are also stabilising. My great vice now is letting out a string of swear words when anything goes wrong. This is usually when things break or a task goes slightly wrong. I also still have post stroke fatigue and that sends me to bed for an hour each day.

Keep going. You’ll get there!

Thanks John. Glad to hear your getting there, it's encouraging as hell to hear that the spasms can fade. I live with them, but they are the sort of thing I'd happily lose.

Is the swearing just irritation or a gift of the stroke? I also find I now could almost cry at girly films, certainly not how I was before, and I laugh loudly at the silliest things. Labile mood they told me it was called. Don't Google it, or you'll discover that's also a term for bipolar disorder.

Also great to hear that 3 years on you are still improving. In hospital they told me 8 weeks, after that you've got back what you are getting pretty much. Scared the hell out of me but talking to people you get the idea that's rubbish, just that if it's coming back quickly that's your goal!

Anyway, thanks for the info. Definitely improved my outlook.

Hi. My name is Sue. I had a right sided stroke in May 2017.  It left me with Homonymous Hemianopia and some cognitive issues.  

With regard to you feeling down at times or low mood.  I had various episodes of feeling this way.  Then I realised I needed to get help.  I spoke to my gp and was recently started on a low dose of Citalopram 10mg for anxiety and depression.  

I started to feel a massive difference in 3 days! To the extent I wondered if my recovery has been hampered by not doing so much earlier.

 

I am a positive person and have accepted and adjusted well.  I firmly believe that my low mood was due to the chemical changes in my brain rather than through any grieving of what i can no longer do

 

Makes a lot of sense Sue. So many of us get depression which could well be set off by a chemical reaction. I could feel the waves of depression waft over me, but because i had previously had a bout of clinical depression, I knew what was happening and I could fight it off. 

It is a horrible thought that our own pathway to recovery was less than perfect. I do agree with your sentiment. 

Beng positive and smiling are clearly two plus points in recovery.

You have recovered very well and you have a nice attitude.

Best wishes

Colin