Category: news

I found out from the Emergency Room doc–after I had fallen 3 times in 2 days from the lack of power in my stroke-disabled,  weak leg–that I tested positive for COVID; me, who is basically a shut in while pandemic surges forth. 

So I had to go to a rehab facility for the falls, to once again reclaim the strength in my feeble leg. Because of the COVID, once they found one that would even ACCEPT COVID patients, I went. Three days after I was there, I really thought that the time had come for me to die. At 2 am, I wrote my sons burial instructions and some relevant memories of all three of us as my breathing was impeded by the enormous congestion. 

At 6 am, the tide had turned. I slowly became less congested in the weeks to follow. But I was still positive. Everybody–the CNAs, the nurses, the doctors, the therapists, the clinical social worker–who entered the room wore a long gown that hovered above the floor. Nobody knew why when I asked them. They had face shields and N-95 masks, and I started to feel like pariah, diseased and isolated. 

After the third week, I was tested again, and it was negative. Off came the workers’ gowns, off came the face shields. But they still wore N-95 masks. I had to wear a mask when I exercised in the hallway. But some other patients in the hallway were maskless. I didn’t understand why nobody told them!

It was a clusterfuck for sure. I didn’t say anything to those patients, escalating their misery to have gone to rehab in the first place. But why didn’t the CNAs or the nurses say something about their maskless faces? I understood the answer after a few seconds on thinking about it. NO ONE, EVEN THE SUPPOSED EXPERTS AND RESEARCHERS, KNOWS THE ANSWERS! 

As Jimmy Dore, my favorite podcaster, says, “You’re all going to get it [COVID].” The vaccinated usually would feel less of the symptoms longterm, but Dore who was vaccinated still feels awful after the 2nd Moderna jab, has joint pain, and still experiencing a stiff neck on same side the shot was administered.

I’ll say it again: NO ONE, EVEN THE SUPPOSED EXPERTS AND RESEARCHERS, KNOWS THE ANSWERS! You just have to live with it, whatever the consequences are. Or not. 

The post COVID and the Rehab Facility: Talk About Clusterfuck appeared first on The Tales of A Stroke Survivor.

When I heard myself thinking about spelling errors before my alarm clock went off, I knew the social isolation of covid had sent me down the rabbit hole.  Why do four and fourteen have a u but forty does not?  When did people start saying Febuary when it is spelled February?                          Why is Wed-nes-day pronounced Wenz-day?

My biggest pet peeve is that lay means “to put something down” while lie means “to assume a horizontal position.”  The people who decided lay and lie mean different things also decided      laid is the past tense for both lay and lie.  Context is an easier way to keep words that are similar from being confusing.  “I lied in court” is clearly different from “I lied in the bed.”

A rabbit hole is something that transports someone into a wonderful or troubling state or situation.  homeafterstroke.blogspot.com

For me, it is not that I forget future plans when I think about them. It is that it is so easy to forget to think about “what else” is supposed to be happening instead of getting lost in the “now”.

My TBI has greatly accelerated my hyper vigilance that spawned from my Combat/War PTSD. Now, I am so driven to be alert and engaged in what is happening around me right now I get consumed by it and forget to even consider “isn’t there something I’m supposed to doing”.

It is a state of failure caused by sweeping moments of confusion. I wonder if I am alone in this or do other people also experience much like this. I would dearly love to talk to people who have overcome such difficulties. Their guidance would be great to have and share with others.

I am glad I worked as a therapist before I became a professor.  School creates a false sense of security.  If you do not know the answer, you can ask teachers what they think the right answer is.  Book learning is a good place to start, but it does not tell you what to do when some clients do not respond to treatment that works well for many clients.  Therapists are humbled when they have to say “I don’t know” when information taught in school does not work for a client.  Therapists have to generate their own solution and watch carefully to see if it helps.

In school you learn information in one unit and then move on to the next unit.  However, the right thing to do in the clinic is a moving target that keeps changing as the client improves.  I was reminded of this when my in-patient PT said I was getting better.  I complained that walking was not getting any easier.  She said she was helping me less.  I never thought to tell my clients this either.  homeafterstroke.blogspot.com

“I regret to tell you that you’re going to be in a wheelchair, now that you had six falls in the space of four years, until you build up your leg muscles,” said the social worker, who was surrounded by a physical therapist, an occupational therapist, my caregiver, the nursing coordinator, and a student nurse who was looking sorrowfully at me. 

I thought the social worker was smug and must have said those words to other stroke survivors, and actually eleven falls in three years, to be precise, and I scoffed at the idea. Me, in a wheelchair. I was using the cane at the time, but with every fall, I regressed in my ability to walk, and my narrative followed.

“I just want to be where I was before the fall,” I pleaded every time. But every time, my ability to walk was further back than it was the previous time. 

“It will be safer,” the social worker continued. Safer, a favorite word of every PT. Nobody asked me if I’d rather be safer. Maybe I don’t want it to be safer, I thought, obstinate, stubborn to a fault. Maybe I’ll take my chances, see where things end up. 

Fast forward five years. I’m still in the chair, actually a transport chair, which a person behind me has to push once my legs get tired after 10 minutes of propelling myself. 

But when I took yet another ambulance to the Emergency Room and needed thirty stitches to close the tear on my good leg right down to the joint after hitting my leg on the dresser which had sharp brackets, leaving behind a bloody mess in the bedroom, I knew, at that moment five seconds after the fall, I would have no more. No more of any of it.

While I was in the hospital for three days, three things happened. First, my son and my aide rearranged the bedroom where my leg could hit nothing. The dresser was moved to the opposite wall. 

Second, I got a floor-to-ceiling which my younger son installed that helps me with both exercise and transfers. 

And third, Sara and I founded Brain Exchange, exclusively for stroke and other TBI survivors to write ongoing emails in a 1:1 partnership which keeps me busy throughout the day and is helping me forget about the nursing home hellhole I was situated in for five weeks.

The renowned Daniel Gu who had a stroke, the founder of Strokefocus, developed the sign-in form and logistical meetings among Daniel, Sara, and me, and ever-pleasant Anne Tillinghast, who didn’t have a stroke, the musical director of The Backstrokes (a band of stroke and other TBI survivors of which I am a member playing keyboard, the others mostly string and percussion, singing and playing every week) assists the effort.

So all of this is to say, I’m better now, still having physical therapy at home, and thankful for the Thanksgiving that I will attend later today with my sons and son’s girlfriend.

I haven’t fallen for four months. Will I fall again? How the hell should I know! After every fall, I said it would be the last, and you see how well that turned out.

Hypnotist and Bobbie

As a stroke survivor, I once considered hypnotism as a way to walk fast again. The doctor said hypnotism doesn’t cure weak, atrophic body parts. But then there’s Bobbie.

A friend recently told me how disappointed she was after she wore a light backpack while walking on the boardwalk at the beach.  It has been six months since her shoulder surgery so she did not expect her shoulder to ache after this walk.  Her story reminded me of how I felt when I had setbacks in my recovery from a stroke and total knee replacement surgery.  Her story reminded me of when I told my therapist that I was discouraged because of a setback.  My therapist tried to reassure me by saying lots of people have setbacks.  This made me realize that seeing a setback is not the same as experiencing one.

What I did not know as an OT was that being able to deal with powerful emotions and negative thoughts is as important as dealing with the pain and fatigue created by physical challenges.  I no longer wonder why some people die soon after they have surgery to pair a broken hip.  I have had to talk myself into not giving up many times.  When I feel afraid or disappointed, I start reminding myself that half of recovery is mental.  It is not easy.  homeafterstroke.blogspot.com

Sometimes it can be hard to know the right questions to ask your doctor after having a stroke, especially if you’re dealing with brain fog and neuro fatigue. Use this list as a guide or print it out and take it with you to your next doctor’s appointment!
Continue reading “10 Questions to Ask Your Doctor After A Stroke”