The 539 Steps

Hello wonderful group,

On Sunday night my jaw felt like it was locking. My face had a tight nerve / muscle, it ran down my neck and onto my shoulders. I screamed a lot of the night, and woke up after an hour at 3:30 thinking I had to phone an ambulance. My wife persuaded me not to. Next day, still in shock, I concentrated on relaxing that area. Tuesday was also a bit rough, but KGB and Simon kept me company, and I did 4 laps of my patio outside; that’s 160 steps. In the evening a friend (who by chance is a physio for strokers) popped in and massaged my shoulder for 20 mins. Last night I struggled, my eye hurting mildly (I now have MGD apparently) to steadily and my leg cramped, tight, painful, trying to unlock. I thought it hadn’t unlocked this morning it was so stiff and painful and full of paresthesia. At this point you’d be right in thinking I was ready to give up completely.

But the sun was shining this morning so my wife drove me up to the Downs where I walked 539 steps in the grass. Two breaks where I sat to regain my strength. My eye watered with the wind (my new glasses on their way) but there was one thing I couldn’t complain about; the fresh air. In almost the same spot, 9 months ago, I got out the car, did 39 steps at the most, got overtaken by an 85 year old couple, subsequently had a cry and came home after nearly falling over twice. That was Valentine’s day.

Today, I feel more of a wreck than I did in February (but that’s just because I’ve forgotten what a wreck I really was back then), but I managed 539 steps today. Actually it’s over 600 when you factor in getting in and out the house. I finally understand the meaning of 2 steps forward 1 step back. Those steps didn’t just happen; I earned them. That’s my story for today. Probably a banal episode, but I will copy this into my book. It’s the highlight of my week.

ciao, happy exercising everyone,
it helps keep us warm, Roland

ps. there are many differences between now and Valentine’s day, some subtle, some more pronounced. My arm could move almost as much back then, as now. However, one major difference is that I can finally feel the weight of my shoulder. The means I now know when I have given up the tension in my shoulder. Without weight and feeling there’s no feedback telling you that you are tense. Today I could focus on relaxing my shoulder while I walked because it feels like it weighs a ton. That’s better than not feeling it at all.


Just wanted to say well done on your progress so far, you hard work and determination amazes and inspires me best wishes


Jeez but your body likes to put you through it doesn’t it :disappointed_relieved:
You have tenacity and a staunch wife who loves you deeply and between the two of you, you will succeed. Don’t give up, don’t given in, you’re progressing, albeit at a slower pace than any of us ever like, but you are getting there. You’ve got the determination and the drive to keep pushing through, to bounce back when you’ve been down. I’ve seen it in your posts how much you have improved since you first joined last February. It’s harder to see it when you’re the one who’s living it day in day out. And I am so pleased you have stayed the distance, you’re a good man and you will see this through because there’s more good improvements to come by the sounds of it. Onwards and upwards :people_hugging:

And don’t forget the car…every step counts :wink:


Thanks, Elle1

just when I’m really down, a fighting streak shines through.
I hardly know where it comes from.

ciao, Roland


Thanks for your support.
You have followed me closely, Emerald,
My progress is entirely down to the resilience of my wife, and the excellent team behind me. But I must say it has been a rough ride. May the good Lord protect us through the Winter,
ciao, Roland


Roland, so sorry you went through this. I’m not kidding when I say I had an early morning, middle of the night attack similar to yours. From ear down neck, to shoulder numb, stiff, It worked its way down the right of back to hip making it very hard to walk and very wonky. The pain is in the right middle trapezius. Right hand is almost useless with stiffness. Don’t know how your weather is in the UK, but we are getting very chilly days here recently. So…weather related? I feared a TIA, but we’ll see how the day goes.
I understand your tenacity and hard work and respect you for it. For me, I can easily overdo it and suffer the next day for it. I have to find the Sweet spot.
I walked up a steep hill with my wife yesterday it was cold and windy but I persevered and thought “surely, this will make me stronger and feel better the next day”. Boy was I wrong. Frustrating.
I don’t have a team anymore. I’ve been thru about a year of rehab in 3 facilities and I could almost be a therapist myself with all my experience. So…I’m on my own now except for Doctors throwing pills at me.
Hang in there pal and please keep the faith.


It’s tough, Roland - you’ve been through A LOT. I know strokes intimately, as my mother had one that ruined her mind for good. You lived through something that is terribly traumatic. My heart hurts for you all on here. I cry with you all, even though I never had a stroke. I cried every day when I took care of my mother after her awful stroke. I felt helpless beyond belief with her (but that’s another story).

Please remember: Mingtong Gu always says we must acknowledge how bad things are first. Don’t forget this. Then, we go from there.

I see you had an anxiety attack over your jaw locking. This is understandable. I would have done the same. Your poor wife probably didn’t know what to do (god love her!). We caretakers just don’t know what to do sometimes. We see our loved ones suffering, but we’re trying to remain sane and rational at the same time (and so are our dear loved ones with strokes, but sometimes they just cannot think rationally).

But, guess what? You keep on going, and so does your wife, who loves you dearly. I am proud of you - and I am proud of her.

You have made real improvements this past year. Even on the worst of days, you can still know this in your heart.

Rough waves come for us all. They batter you until you almost drown. But you finally come back up for air, and then you’re ready somehow to take 1000 steps next time.

Take good care.


@pando you definitely have a lot to put up with but well done on getting out there and doing all those steps. I remember when I started to manage a few hundred steps each day. It felt great even though it is nowhere close to what I used to do.

It may not feel like it at times but you are doing so well given everything you’re going through.

Best wishes



Thank you @pando your message is inspiring. It is so easy to think one is getting nowhere.
From 39 to 539 . . .

Keep on keepin’ on
:writing_hand: :smiley: :+1:


Thanks, Ann, I agree, now I have objectively proved it to myself.
Plus the new milestone of finally feeling the weight of my shoulder.

Progress indeed, thanks, Roland


Too true, Matthew. You understand I have been through ups and downs; one bizarre journey. I’ll let you in on my Chinese Doctor’s visit this evening. Naturally he was delighted about my progress, and excited to hear that I can feel the weight of my shoulder, finally. And boy does it feel heavy !
Anyway just as he was finishing off I said “I’ve also got this sore spot that came out of the blue, between my big toe and long toe”. Well, he explained that’s the other end of my liver channel. The channel can cross over from left toe to right eye, as in my case (or vice versa). What causes problems along the liver channel, I asked? Answer = Emotions. Surely enough they’ve been all over the place, lately. Well, I thought, my own thoughts and emotions are causing these little upsets along my liver channel. Then someone I often talk to on a Wednesday said, “imagine how they affect your wife!” Suddenly I saw the truth in that, and how my wife has been unstable recently because of me. And she has recovered and perked up in parallel to me.
The road to recovery is a hard one, but my Chinese Dr said to be forgiving to myself, and accept the ups and downs… it’s part of the journey. I really understood where he is coming from.

I feel like celebrating. Today the stubborn streak in me proved there is much to hope for. Good luck to all stroke-warriors and hoping you all overcome seemingly insurmountable odds.
ciao, Roland


I believe you, Derek,

We seem to run parallel lives, just on opposite sides of the pond. The weather is also on a mirror path. I totally understand and respect the concept of the sweet spot. That is what I usually aim for. I’m sure the Hill did make you stronger… in the long run. The short term impact was, of course, devastating for you. Not having a trusted team makes it so much harder, I would imagine. Maybe you can find a counselor? I used to have one. It was like holding up a mirror to myself. Totally worth it. I’ll hang in, and you hang in, and we’ll get there together !!
Big hug, ciao, Roland


wise wise wise. Hard to do, because the repair journey is such a major one that the mind & body can only see the big picture in little chunks. To take it all in at once would have caused me major trauma. Now that I’ve made considerable progress I can see that I was in worse condition than I had originally realized


I’m using your Chi or however you want to call it to channel my inner energy to pack! Everything else nearly sorted but thank the great polar bear in the sky that JP is back to help tomo before I go!!!

It’s hard when a 1 night journey turns into 4 because of engineering work on the trains. But I don’t get out much and so 6 more children than I was expecting?!?!

My polar bear stash is depleted but I have not used @pando 's socks - yet… :rofl: :rofl:

And I’m ridiculously anxious and excited - however my BP is a mere 150/95 and I am watching darts and will deal with it tomo.

Thanks for always cheering me up with your humour and stoicism Roland @pando


:polar_bear: :polar_bear: :polar_bear: :polar_bear: :polar_bear: :polar_bear: :polar_bear:


Can’t wait!!!


Wow, you’re off to Jimmy’s Park - have fun & hope you return with happy/settled memories


It is very very difficult for me as you know mate but thanks to you and @SimonInEdinburgh and @Pinch and @Sass and my girl @DeAnn and many others @ashleyhk38 @j.p.mac

It is a lot easier so I thank you all really.

Could not have the mental strength to do this without you.

I guess I should point out that organisation is not the issue - 1 day - 3 days - 4 days - who cares. That’s the easy bit. The mental challenges are much more severe

K :polar_bear: :wink:

I’m going to eat this:

sod a few spoons


You only like polar bears and three other people. :face_with_hand_over_mouth:

Me - I only like polar bears. Sorry. LOL.


I really don’t know what to say, either to YOU, or to the fantastic people egging you on and suppling distant support.
You are a giant among men - and I don’t say that lightly, or flippantly. You have drawn on reserves of determination I can only dream of. But you DO inspire me, and long may you do so. I wish you a, hopefully, more comfortable journey in the not too distant future… And if it’s not, I’m sure you can deal with it.
Fond wishes,
Bob Q.


Thank you Bob,

I think I’m an ordinary, average person, but my team disagrees. They are wonderful, as is this group on my stroke forum, too, with folks like yourself encouraging me. Today I can feel the weight of my forearm more clearly, and my pole-lifting exercises went without a glitch… usually the first attempt is painful. Today for the first time lifting my arms was painless, just like my good side. Best wishes, and good luck,


No, Roland, thank YOU.