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What I never thought I would ever be able to do again in the 1st few months after my stroke but can do now.


Willis

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So many fears race through our minds the 1st few months after our strokes. There are so many things we are sure we will never be able to do again in front of us all to different degrees. One of many for me was to tie my own shoes ever again. Now on good days I'm doing it with almost the ease of the old days.

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Congratulations! That's one I'm still looking forward to in some ways. I use a modified lacing method that makes me independent, once the laces are setup in new shoes. My sister is the wonderful one who takes the laces out and re-threads them my way when I get new shoes.  One of those times where the old way doesn't work so you find a different way. elastic laces and clips have limited functionality. I now get to laugh at the PTs when they try to help me with my shoes and are completely baffled.

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Yes it makes us think in ways we never had to when it comes to getting things done.I've gotten pretty creative at times. Oh yeah and laugh at ourselves sometimes too. What about something you can now do but not before? I remember them giving those laces to one of the people I was in rehab with. I never could figure out why I wasn't given any. I guess (as I well know) they know what they are doing.

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That was a difficult one for Ray. He was very lucky that he had some great Occupational therapist s who tried different methods until something made sense to him. Congratulations on a new and improved you.

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Thank you! Ha-ha new and improved. I like that. It is a bit like being a child and learning for the 1st time how to do things. It does help ones spirits to make some sort of progress. No doubt I will never lose the numbness on my entire left side but I am able to see change for the better. I know I am very lucky. Hopefully over time Ray will master this and continue to progress. God Bless the caregivers. We are nowhere without you.

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When I 1st came home from rehab I was unable to come down stairs forward. I would have to put a death grip on the handrail with my right hand (the good one) and slowly back down the steps top to the bottom. I can now very carefully walk down forward as long as I have the handrail. Coming down forward puts the rail on my left side so I must use the "bad limb." As long as I take a step at a time and go slow I can do this now!

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I assume you were not given those laces because the expectation was that you would get to where you are now and without an incentive to keep trying you might not have got there. My arm/hand were and are basically useless. in rehab I didn't have any feeling or sensation so there was little expectation that I would get much use back, which doesn't mean we didn't try and I do even now 9 years later go though bursts of having another go with the arm, but the practicalities of day to day living also need to be allowed for.

 

I can now do the stairs no hands most of the time too, although I prefer to have a hand or even a finger on the rail or wall.  Did a new HiMAT (https://www.physio-pedia.com/High_Level_Mobility_and_Assessment_Tool_(HiMAT)) assessment the other day and scored 17/54, this is my best score yet. There are still large sections of the test that I score 0 on, but 17 is a lot better than my original score of 11 (4 years ago.).

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Very good! We know any advancement can be uplifting and is good. Yes I also do a bit of wall leaning on the stairs at times. I have thought of trying no hands but not on a long flight of stairs. I have gone up and down the 3 steps to my deck no hands and even carrying something! Very slowly of course and making sure my left foot is coming along for the.... I don't want to say "trip" lol. The day to day living need played into my decision to put riding the recumbent bike every other day on hold. At least until the snow flies. There is too much to do around here and the bike was using up all my spoons. Please tell me is it heathber? or Heather? I see you addressed as Heather. Onward!

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Willis that's awesome news!

 

Would you have believed, a few years pre stroke, you'd ever be so jazzed about tying up your laces?

 

The little things get taken for granted, but it's the little things that count!

 

Way to go!

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Thank you GreenQueen! That was my purpose of the blog. Hoping to hear what others are doing that they never thought they would be able to post stroke so others might have hope of what may lie ahead for them. Another "biggie" for this lefty was when I could once again flip the butter knife back and forth while spreading peanut butter on toast.

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Hi Will, my proper name is Heather, heathber is my login name. I don't mind which people use.

I learn "new tricks" all the time. They probably mean nothing to other people though, even strokees, as most of them are ways to do things around an arm/hand that is not much use even as a dead weight.  Pre stroke I was a hand sewer; quilting, cross stitch, embroidery, tapestry etc.  I pretty much stopped doing it after.  Although in rehab we worked on the adaptions needed to get me back to the tapestry, it fell by the wayside after I returned to work. It takes more spoons than I can spare.  What used to be a relaxation has become hard work.

 

But I've recently started work on my "big quilt" again. It is a hexagon in hexagon design of 6 inch mini quilts that will be sewn together to make a big one. blue/red/green tops with a cream backing and edging. fiddly but beautiful, I 'll need to put some photos up, but at the moment my phone is dead. I started it as a fully hand sewn piece and I had over a number of years made about 40 of the mini quilts before my stroke (there need to be about 200 to start to put it together, total will be about 500).  I put it in the UFO cupboard after my stroke thinking one of the family might eventually pick it up. But then a couple of months ago I thought about it again and realised it doesn't matter if it's a mix of machine and hand sewn blocks.  I've now finished all the blocks that were assembled but not sewn and assembled and sewn a couple of new ones! I'm now using sewing clips rather than pins, and I have this cute mini iron that I use to do the folds.  The end results are not as uniform in size as the earlier blocks, but they are close enough that I'll be able to make it work.

 

So that's an example of adaption rather than regaining function. I hope it's not too far away from what you were looking for

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Longtime readers of my blog may remember my goal of carrying my canoe again after my stroke 12 years ago. It took me six months and it was not pretty, but I did carry it again many times including June this year i am 74 now so that may be the last time.

 

congratulations on your recovery, I think it took me many months to tie my shoes again. Continued good success.

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Thanks for that report GeorgeLesley. I have only recently been visiting here frequently and had not seen it. That is the kind of story I was hoping to read. Right pretty or not mission accomplished. At 74 you may have been getting close to your last carry even if you never had a stroke. I know at 69 and almost 5 years post stroke that sometimes I have to tell myself I'm close to 70 and some of this fatigue is the normal part of aging. Hope if you're continuing with your love of canoeing you will always have some one to help.

 

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Wow Heather good stuff! Absolutely will be looking for pictures of the "big quilt" and any of your craftwork. I'm trying to picture it. It sounds cool. My sister-in- law quilts and has made us one. It is difficult for a "normal" person. Good for you. I'm hoping you can use this as your happy place and put no pressure on yourself understanding you're not the same gal you were back then. Yeah those little tricks we invent to get by. I have said to many that this journey has been fascinating in many ways when I see how the brain and body refuse to be left behind and insist on not being left out. Onward! 

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Hi Will had to report this one! Today I hopped on my left leg for the first time in 9 years! Admittedly I had a good solid bar under my right hand and probably cheated a little through that but I actually had air time!  We tried it as my PT noticed that today on the total gym while doing 2 left, 2 right repeat (skipping drill) I was fully clearing the plate without assistance from her for the full set. So we tried single hops in full gravity and I COULD, only 5 times before the muscles refused to do it again. but it means I can do it. So now we start building it up. Next goal flight phase for running doesn't feel so impossible right now.

-Heather

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Awesome Heather! Now what have I noticed is after I have new progress like that my leg kind of goes away again for awhile and won't necessarily be that strong the next day. It seems like it is saying "ok I gave you some action here and there will be more for you but I'm tired again now after that and need to go back in recovery mode again for awhile."  There is no limit to what could possibly be in the future for us! I've told family and friends if I could live to be 120 or so I could even be 100% again. Ha-ha

 

I mentioned this because when I had a good "I'm getting better and I feel so strong" day. I was disappointed when  that achievement might not be there the next day. I finally understood that it is progress and it was an achievement but like everything else it is going to take time, much time. Onward Heather!

 

 

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The limit is reached when we stop trying. So long as you are trying new things anything is possible.  That "going on strike" effect of finding something new is quite common I think.  My theory goes something like this. Even "simple" things are complex e.g. hopping requires that certain muscles turn on in exactly the right way and in the right sequence with perfect timing for others to turn off so those ones can turn on and as it's an explosive movement they have to turn on together and that's not even thinking about the shock absorbing and landing that has to happen afterwards.  The first time you do something with that complex a sequence is partially dumb luck, repeating it requires all those things to work together again and the post stroke brain (well mine anyway) is not so good at sequencing and fast reactions so it takes repetition to setup the pathway/sequence so you can keep doing it and finding that perfect sequence a second time seems to be tricky.  and by the next day the brain has forgotten how it did it, even if the muscles are strong enough.  But because I know I did it once I keep trying and the sequence and signals get better/stronger and the miracle becomes normal again.

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Great read Heather, thanks! You have a gift I feel for putting those facts and thoughts into words. I will never stop trying unless something happens to stop me. In the warm month here I have an acre of grass approximately to keep cut. Can't fall down on the job there! I do like riding on my zero turn mower as I become pretty mobil again and can get around the property and visit with the neighbors. My 14 year old part boarder collie Ellis is my other motivator. My wife April is up at 5:00 AM for work and gone by 7:00 AM. She feeds him but usually she can't get the old guy to go out and do his business. So around 9:00 AM when I'm lying there waking up he comes in the room, stretches down on his 2 front legs and gives my the "let's get moving here" look with puppy eyes. Yes you are so right the simple things are so complex at times. When April came home from work the other day and asked me how my day was I was telling her ok but one of the tough things is how the simplest tasks of life can be so difficult at times. She knows though that I accept these challenges with open arms. Interesting point you have brought up about sequencing muscles. My left hand and arm although still numb have become a little more useful. I try to go back to using a fork or spoon with it when possible. It blew me away when I first started trying. I had no idea how many muscles were involved in the simple act of lifting a fork or spoon and turning my wrist to get the food in my mouth. Literally all the way up the arm past the elbow to my shoulder and even across my back all requires group muscle cooperation. Yes, the fast reactions. I do drive but not great distances and just like into town and stuff to get a haircut or to an appointment but that uses up all my driving spoons for the day usually. Here's to many things becoming normal again before we pass. Thank you for the insightful chat Heather!   

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It's Interesting to me how as energy very slowly returns and the fatigue is less debilitating at times how I have caught myself thinking "Wow I'm back". Only a day or 2 later wondering where it went and what happened. I'm learning. 😎 

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Lots and lots of sleep the last few days. I'm loving that. Somewhere between 11 and 12 hour a night all together. Not necessarily uninterupted but deep and not awake for long periods usually. This happens when my left side is making some progress and I can feel it coming back when I'm lying quietly. However slow  it might be I am healing! ONWARD! Time to head upstairs and do some lifting before a shower and dinner. A blessed week to all.

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20 hours ago, Willis said:

Lots and lots of sleep the last few days. I'm loving that. Somewhere between 11 and 12 hour a night all together. Not necessarily uninterupted but deep and not awake for long periods usually. This happens when my left side is making some progress and I can feel it coming back when I'm lying quietly. However slow  it might be I am healing! ONWARD! Time to head upstairs and do some lifting before a shower and dinner. A blessed week to all.

What I don't get is with all the sleeping I would expect to be getting weaker but that's not the case. It has been hard for me to accept the extreme amount of sleep and rest my brain and body have wanted the last 4 1/2 years. I have tried to set in my head what the sufficient amount is and when enough is enough. Stroke victims can't do that. That doesn't work for us. It is so important to be in touch with ourselves and give our damaged selves whatever they want if we are able to. I listen to what my body and brain desire and give it to them.

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Ok so it's too much to expect to sleep like a tired teenage boy after football practice every night. My hourly total is still good just not always continuous and uninterrupted. It did make me think about something I have come to understand as I convalesce. Often I think we see some nice progress and think to ourselves....ah well I've got that back now. Not so fast it was good but might not stay just yet but has been done and will be coming back again. 

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yes the first couple of times you do something the connection and pathway tends to be very weak. it has to be reinforced multiple times before it "sticks"  but knowing you did it once makes it easier to keep trying, and all of a sudden you can. mind you you still need to keep practicing or it goes away again.

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2 hours ago, heathber said:

yes the first couple of times you do something the connection and pathway tends to be very weak. it has to be reinforced multiple times before it "sticks"  but knowing you did it once makes it easier to keep trying, and all of a sudden you can. mind you you still need to keep practicing or it goes away again.

😁

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On 9/30/2019 at 8:00 PM, Madade said:

This is very inspiring  and good reading.

Madade I appreciate your comment for sure! I'm often torn between posting somethings or not. I think it can be a fine line at times of whether something might make someone happy or sad and I never want to hurt anyone in anyway. ✌️

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