It is just over 4months since my brain bleed stroke. In that time I have been mobile but recently I feel worse now than when I was discharged from hospital. Frequent morning headaches and light headed and fatigue. I feel I was progressing well but feel that I am deteriorating. Has anybody else felt their recovery progress has deteriorated?
It is your post that made me join this group. Although my stoke was ischemic, I have hit a period after learning to use my left arm and hand and to walk, I thought I had hit a plateau. I was wrong. I am regressing from trying to find my gait to tottering like one year+ grandniece. I am having a proprion problems, a balance problem I had once 20 years ago. My appointment with the neurologist is scheduled for February 2025. To stay positive until then, I try to create ways I can rehab at home. I am always tired, but today I am going to walk/totter about our yard pitted with holes dug by my boxador.
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p.s. My stoke was five months ago.
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Simon, thank you. Btw, my boxador looks more like a lab, although his 14 cousins on Embark do not.
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@Osttyrol i wonder if part of the reason you feel worse is because you have increased your activity levels. This is quite common & should settle once you get used to the new levels of activity or you might need to slow down a little bit again. Have a look at stroke decompensation.
If you are really concerned though you should seek medical advice.
Best wishes
Ann
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@Trooper hi & welcome to the community. Sorry to hear that you feel you are going backwards. Stroke recovery is about ups & downs & often taking a coyple of strps backwards before moving forwards again.
I have posted a link in my reply to @Osttyrol on stroke decompensation which might be worth you having a look at too.
Best wishes
Ann
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Dear Mrs5k, I went to the link and read it and it answered questions I had when people talked about plateauing. Now I understand the “why.” Thank you. Trooper
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Glad you found the link useful @Trooper
Simon I E
Virginia Beach, Va
I appreciate that the UK is much more appreciative of alternative medicine than the IS is. Is the term for yard “garden” there?
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Yes, many times
My stroke was severe. I didn’t have my first spasm until 6 months after my stroke. It was a powerful contraction of the adductor longus (a muscle in my thigh) that would hurt every other day for 1 year and 1 month. It took some stamina to get though that, but I discovered a CORE strengthening exercise (which I called “X-Frame”) that got rid of it.
That wasn’t the end of my ailments, but I got the feeling that rehab was going to be a series of ups and downs. Despite that, the trend is that I’m slowly resurfacing. It took 17 months for my nerves to kickstart a wake-up process ; the start of a transitional phase of innervation (I’ve heard people describe it as “thawing out” and I sometimes call it “coming online”). Then, along the way I acquired and overcame several injuries, all due to the rigidity or lack of flexibility typically experienced after a bad stroke.
I felt I was deteriorating many times ; the more progress I made, the more I was dissatisfied with my condition, and the more progress I would expect, or even take for granted. Finally I understood my body was doing the best it could, and I felt I could let go a bit, and just try to stay out of trouble, (cause no harm) until better days.
I’m more stable now, though anything unfamiliar upsets me. I boast I’m not touched by fatigue, but I can only do a fraction of what I could before stroke. I say I have no fatigue, usually, because I rarely exceed my expected level of performance… if I do, then I call it fatigue…all it means is I tried to do too much that day.
In time you will notice the bigger picture, hopefully
Good luck, ciao, Roland
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Hi trooper and welcome. I had my stroke in january 23. I find i go backwards when im poorly. Its so frustrating. This group have been really supportive
Anne
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Many thanks for your encouraging reply
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My stroke was at the start of April. I had a multi lobar ICH that initially affected my right side and my speech. I made a rapid recovery for the first seven weeks.
However I feel like I’ve plateaued since then and am wondering if I am going backwards, particularly with my speech. It is comforting to find other pepole experience this.
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Simon, Alternative meds are vitamins, supplements, frequency medicine, reiki, etc.
Sometimes a hurricane will sideswipe us, but the Gulf Stream and the Outer Bank of North Carolina or South Carolina save us from the worst. Tornados are developing here more often. Perhaps a result of climate change. I took a couple dozen photos of Jack the digger yesterday, and all ended being blurred parts of his body. Here is an older photo of Jack and and one of Lolo who loves to pose and
is very photogenic.
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Pando, I like the phrase “coming online.” That’s a near perfect description.
In the first four months I progressed quickly. I had loads of therapy. Then, I had an evaluation that showed I had loss quite a bit of strength in my left leg and a problem with proprion that was keeping me from walking rather than lurching like Frankenstein or tottering like a one-year-old. Now I have more exercises to add to my other 40 or so others. There is not enough time in the day or energy in my body. Learning that plateauing or going a step backwards in this process is normal, I am going to ease up on myself so I have time to live my life. I am going to ask my PT to give me a list of the top 10 exercises for my issues. And then I will have time to read the last half of The Bee Sting. Yes, the one by the U.K.'s Paul Murray. Thanks to everyone who shared their “backwards” story. 
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Hi Trooper just wanted to welcome you to the forum 
I see plateaus as the landings on a stair case, to stop and rest a while before you scale the next flight of stairs. It can also mean your mind and body need something more, to switch things up a bit to get some more progress. Our minds still get bored and if you’re doing the same old exercise routine day in day out, the mind will soon become stagnant. It likes variety, so think about how you can incorporate some your daily exercise whilst going about your daily life. It doesn’t have to be setting so many hours aside each day to do a specific routine of exercises. For example you can do balance exercises or practice walking a straight line while you are cooking or waiting for something. You can carry a stress ball or finger strengthener around in your pocket for hand exercises as you go about your day. You can even do arm raisers or bicep curls with a watering can as you water plants. You can be fiddling with buttons and zips to exercise dexterity while you are reading. The list is endless and nothing helps memory more than living it 
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It is common to have ups and downs and especially to plateau or be less able to see progress day to day. But there are a few late complications of stroke, especially a bleed. If you are getting morning headaches it could be a pressure problem and I suggest you ask your GP
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Hello, fellow American. Your Lolo, looks much like my Rocky…another lab mix… I don’t know with what… a beagle, jack russell terrier, boxer, or American Pit Bull. Whichever, she is the sweetest, friendliest, hopefully reformed shredder and escape artist…and has helped me tremendously in recovery and learning what my abilities are and can be, as well as bringing me so much love and joy. I hope to see you here more often, or in an online meeting.
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Hi, DeAnn, At the dog adoption center, Lolo was billed as a lab mix, but she is actually a foxhound mix. Not a bit of lab in her according to Embark DNA. We were surprised.She has some beagle, Australian shepherd, Calihochee leopard dog and more. Jack in the lab mix.Thanks for letting me know about the cafe. It might be a couple of weeks before I show up. It is quarterly med time for me. Btw, I am on eastern time. You?Off to my morning totter!
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Simon, many thanks for the links.See you on zoom one Thursday soon. Have a lovely day. Trooper
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