Healing from stroke has a hierarchy. The upper joints recover before the lower joints, and the leg recovers before the arm because it has the benefit of weight-bearing. So far, my recovery has followed this conventional wisdom. Where my experience has not aligned with medical lore has been in the timelines. My expectations and those of my family were that I would recover more quickly.
In the beginning my "failure" to meet recovery "deadlines" worried me. But I have since come to disregard the neurologists quoting statistics on the diagnostic front: Eighty percent of my recovery will occur within the first three months? NONSENSE!
I am continuing to make steady progress in my 16th month. Therapists and survivors with experience say that recovery continues for years. I hold onto these truths, and try to have faith that the comparative riches of movement and feeling in my upper limbs will trickle down to my struggling fingers and toes.
Here are some of my real-life milestones to the best of my recollection:
Leg
Week 3 — bend knee while lying on belly
Month 11 — bend knee with some regularity while walking
Month 15 — walk without brace
Arm
Month 1 — move shoulder joint
Month 4 — straighten elbow with effort
Month 7 — hold full weight in crawl position
Month 10 — hang onto moving bars on cardio machines
Month 13 — open fingers in relaxed position (index/thumb inconsistent)
I agree there is a hierarchy but it really is dependant on the damage in the penumbra or bleed drainage areas. This is where the medical staff is totally missing the point. Early recovery comes from the periphery, closest to the good neurons. The last and maybe never to recover is the functions that were in the dead brain area. Since my finger control area is dead I may never get it to work. Ah well, us stroke survivors should open our own school to teach the medical staff about stroke rehabilitation, they obviously know nothing.
ReplyDelete16 months and you CONTINUE to make steady progress. What wonderful words those are: CONTINUE and steady.
ReplyDeleteWhat you didn't know 16 months ago was that progress would be continual or steady. I imagine, from my own experience, that you feared that neither would happen. What a gift and a blessing. And what a gift you are giving to others in documenting your continual and steady progress. What others need to know, however, is that the continuation and progress comes, I think to a large extent, from YOU taking daily action to make it happen; both action and no action have consequences.
I read your list with envy because I am 2 years post-stroke and I still cannot do many of the actions on your list. I plan to keep working on them all , though, because I do not know which areas of my brain are gone for good; another part can be drafted to do what I want anyway, so there's always hope.
ReplyDeleteI think what you wrote about having an expected timetable that ends up being disappointing is a good point to make with other stroke survivors. I did the same thing myself. One early action I took was to put together a document I called "Barb's re-entry plan," regarding my return to work. It had a timetable for recovery that in no way overlapped what my brain and body did.
It is so good to see your time lines and achievements. Steady progress is wonderful! It is so easy to loose track of what you have already accomplished so keeping records can be very helpful. I was looking at a set of goals they had me make up at rehab about a month after and can hardly believe that is where I was back then.
ReplyDeleteThe neurologist told you what people believed in 1970. I continue to be amazed by how out of date neurologists are about stroke. Research has shown that stroke survivors can recover function even 20 years after their stroke. Cindy is right - your recovery continues because you work to make it happen.
ReplyDeleteHi Marcel,
ReplyDeleteIt was so wonderful to see you walking and using your hand so well at the meeting in June! What a miracle you are!
Hugs,
Jackie