Thoughts on regression

I know I keep talking about the same things, but I can’t help feeling overwhelmed with this non linear progress, worsening symptoms, and lack of Dr knowledge or help. As I stated before I woke up 4 months after my stroke with an intense tight band stiffness feeling that was originally diagnosed as spacstity, then thalimic pain, and now possibly Parkinsonian syndrome. I feel also like I cannot walk as far recently. Do any of you remember reaching that plateaue after 6 months and anything specifically that surprised you later on recovery wise? Sorry if I’m beginning to sound like a broken record.

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Yes. Plateauing is quite common. Seven years on my walking varies but I can take the bin out, clean toilets and even make raised pork pies. Please dwell on progress so far not regression. Oh I can change a bed too.

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@John_Jeff_Maynard
Thank you for responding. I haven’t yet figured out how to be positive but I appreciate your feedback.

@Mbhope I know it’s difficult to be positive when you don’t seem to be making progress, don’t give up, go back to the GP/stroke consultant to see what else they can offer whether it be physio or meds.

Be kind to yourself, best wishes

Mbhope --I don’t know where your “tight band stiffness” is on your body. But, a few weeks after my stroke I began to feel a tight band feeling around my chest area. It was hard to take that “deep, cleansing breath” . In fact, I had to stop wearing a bra because I couldn’t stand the feeling of the band around my chest. This went on for many months. I think part of it may have been anxiety. I used CBD oil drops under the tongue. This helped relax me somewhat and helped my nightly leg spasms. The banded chest feeling gradually ebbed away an was gone by about the 3rd year. I can stand wearing a bra again. Hooray! And, yes throughout my recovery, I would have periods where I would slip back. I think my brain just felt “tired” of working so hard and send me back to where I was a few weeks previous. 2 steps forward, 1 step back–but over the long haul I got to a much better place than I had been. Hang in there
image :slightly_smiling_face:Jeanne

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I think for many the plateau is common after six months because the brain is less active with self-repair and it sort of resigns itself to testing what it has achieved over those six months. It’s like working on a robot in a lab for six months, and then testing it outside, it will probably fall over, bang into walls, and get stuck a few times.

I have felt regression many times over the past two years, and still have days when I can’t visually navigate my way comfortably. However, as a caveat, little is discussed about acquired conditions after stroke and it is no bad thing to be wary but not let anxiety obstruct too much, going forward. Keep in touch with medical professionals if you are feeling overly concerned. Peace of mind is helpful when dealing with things we can’t necessarily see, inner workings and such.

I have an arsenal of comfort and meditative activities I can turn to on the poorly days. The first half of my second year was one week off, one week on. I knew that after a poor week, I would usually have a good week. This was by virtue of the good week having drained my cognitive resources enough to warrant a week of it needing rest and relaxation.

I’ve mentioned it before, that a fellow stroke friend told me that the “bad patches” were a sign that the brain has made a new connection, and the subsequent progress would be better for it. This may just be a placebo, but it got me through many sluggish times, symptom wise.

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I can’t thank you all enough for making me feel not too crazy. I don’t mind waiting years if it means hopefully one day the tightness will reduce and maybe I’ll have enough sensation relief to be able to wear any other shoes besides sneakers. We just never know and it gets hard to remain stuck. Everyone on here is so kind.

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never apologise, I presume we have plateaued at some point, grit and determination make us stronger

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