It's Not a Rumour

a rock and roll journey through life and Alzheimer's

Brain bleed – the explanation

March 2, 2019
schyjer

This brain bleed ruined our momentum. The explanation was that a piece of plaque from Rick’s Alzheimer’s touched a blood vessel, and with all the supplements and baby aspirin and tons of Omega 3 Fish oil, his blood was thin and so it was a brain bleed and it ruined us. What can we do about it? Thicken the blood. What else? Wait.

Since March of 2016 we have been prevented from taking a lot of supplements and things. All the supplements that I used to give to him cannot be given now. I have to research to find out if they thin the blood. In addition, his participation in many clinical trials is denied. This is because of the risk of more micro-bleeds.

I wanted to try Stem Cell therapy but it requires getting through the blood brain barrier and thinning the blood with aspirin. Denied.

I wanted to try deep brain stimulation but the risk that it could cause micro-bleeds is too high. Denied.

Since then we have tried to subscribe to a lot of clinical trials but Rick doesn’t qualifies anymore for any of the studies because now he gets 1 on MMSE-2. Denied too. He had to get a minimum of 4 questions right and now he can only get 1 answer right, his name.

So what do I do? All I can do now is cry. I am powerless again. I tried to train with him, but he can’t remember anything. What should I do? What would you do in my position?  I keep trying to have hope but I’m losing hope slowly. I am tired. It has been too long.

While at Saint John’s Hospital they thickened up his blood and the blood reabsorbed into him. His brothers even came to the hospital to visit.  Everybody thought that he was dying, even me.  

As the days progressed, he started to get a little better. They started having him sit in a chair and eat solid foods. Then he was getting up, even though he was a little dizzy, but he was able to walk to the restroom. Finally! Next step it was physical therapy. The hospital had to get him ready to go home.

So this part is funny when I remember. This tiny woman, physiotherapist, came to give him physical therapy. We put on his shoes and had him stand and she put a belt on him so that she could assist him to walk slowly. He had been lying down for 3 days. Also she brought a walker and said “let’s try to walk down the hall.” She set up the walker and put it in front of Rick. She explained that she needed to see him walk to see if he was able. So she grabbed the back of the belt that she had put around his waist. I was trying to help but I was just standing up there and watching what she was doing and the next thing I saw was Rick almost running down the corridor of the hospital and the poor tiny woman was flying with her legs in the air as Rick pulled her down the hall past all the other rooms. I laughed and laughed. The poor physical therapist thought that he was ready to go! He did this several times and the tiny woman said “he doesn’t need any more physical therapy.”

The day I brought him home they gave us a walker just in case he needed it. From what I saw he didn’t need it but the hospital said I couldn’t carry him, it’s fair, so just in case, I should have it. Upon exiting our car, Rick got out and I thought, uh oh, he might need the walker and I said “what about the walker?” He sort of flung it out onto the grass. “I don’t need this thing” he said, I am not an old man! It was hilarious. He was perfect physically. For someone who was used to jumping around for 2 hours at one of his concerts, he was fit. I ended up donating the walker because he really didn’t need it. I always wondered if he hadn’t had the brain bleed where would we be now.

3 Comments

  1. You don’t know me…but I’m a former Pachuco currently splitting my time between Minneapolis & Tucson. Your blog is totally heartbreaking to me… I have a brother-in-law with dementia as well so it is instructive to read of your (similar) experiences.

    I think of Rick often… he was the best music composer/songwriter I’ve ever met and I know folks who have had major HITS!

    I’m going to try to find the video I did of SKOGIE in 1976 just weeks before the band left for LA. When I do…I’ll post on YouTube. (there’s ONE song up already)

    I dunno…perhaps it will help.

    ALL LOVE and strength…

    pax- Gregg Kubera (Yo!)

    On Wed, Feb 27, 2019 at 12:58 PM It’s Not a Rumour wrote:

    > schyjer posted: ” This brain bleed ruined our momentum. The explanation > was that a piece of plaque from Rick’s Alzheimer’s touched a blood vessel, > and with all the supplements and baby aspirin and tons of Omega 3 Fish oil, > his blood was thin and so it was a brain bleed an” >

    Like

  2. You don’t know me…but I’m a former Pachuco
    currently splitting my time between Minneapolis & Tucson.
    Your blog is totally heartbreaking to me…
    I have a brother-in-law with dementia as well
    so it is instructive to read of your (similar) experiences.

    I think of Rick often…
    he was the best music composer/songwriter I’ve ever met
    and I know folks who have had major HITS!

    I’m going to try to find the video I did of SKOGIE in 1976
    just weeks before the band left for LA.
    When I do…I’ll post on YouTube.
    (there’s ONE song up already)

    I dunno…perhaps it will help.

    ALL LOVE and strength…

    pax-
    Gregg Kubera (Yo!)

    Like

    • Gregg, I know of you through Rick from the old days and stories and Shannon and I so appreciate your kind words and support. You and I agree about Rick being a great songwriter and I think that you all did the most challenging music and experimental music in Skogie. Really cool and interesting. Thanks so much for responding and sending love and strength back at ya! Thank you so much for the YouTube postings. I love it! thank you thank you! xoxo

      Like

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