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Day 67 COVID-19 self isolation

I’m working in the garden, while wearing my new AFO brace in this episode of the What’s The Matter With Me? Podcast.

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The orthotist came up with a second brace concept, and I went back for a fitting that left me feeling a bit dejected.

She took a video of me walking in the examination room. She showed it to me after. It was framed from the knee down. Looking at it made me feel really disabled. I felt ashamed of myself. I felt sorry for myself. it was kind of nauseating. I looked at myself as an object. I felt disgusted.

I apologized to her for walking so poorly. She was surprised. Raising an eyebrow, she told me I had nothing to apologize for.

click for transcript
"New AFO Brace"Cover

In this episode, I went to get a new ankle-foot-orthotic (AFO) brace. basically, a rigid ankle brace. Things got emotional.

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What’s The Matter With Me? Podcast, Episode 8: “Big Week”

My name is John, I’m 38 years old, husband and father of two, radio DJ, podcaster, small business owner and I have MS (Multiple Sc;erosis). I made this podcast to share what I’m going through.

Recap Episode 7: “Bread Moment”

It was very hot, and now it’s rather pleasant. I’ve been having a peaceful week with my wife because when it’s hot I am grouchy. I also told the story of being afraid of Chad Robertson, my bread hero. I baked bread by this guy Chad Robertson. One day I was at a restaurant and I was with somebody who was kind of hooked up and the waiter was like “hey over there is Chad Robertson want to meet him?” And I was like “uh, it’s cool.” I was scared to. I was intimidated, man. Anyway, he makes great bread. It’s a hard story to tell, a time when I didn’t live up to my own standards. Anyway episode 7 check it out.

Big Week

Last Tuesday I got my haircut, my beard shaved, lined up. Elvis at the barbershop did me all right. I was getting ready, I had a big week, so let’s go.

MS Doctor

Later that day I saw my MS doctor for my annual checkup. We reviewed my MRI, and I am in radiological remission, which means nothing is showing up on my MRI, which means I’m not getting new brain lesions or other disease activity that the MRI scan can see.
Then we took a trip through my brain, it was kind of cool. My doctor was like, “Okay let’s look at your MRI. This is how it works top down.” He starts going through the images, wow.
We took a trip through my brain. My doctor noted that my cerebellum is pretty clean. That’s like the top of my green, the big brainy part. But my brain stem has a lot of lesions, and they are old lesions. They affect my ability to walk, swallow, get up and talk actually. All the stuff I know because I experience it but it was interesting to learn that is caused by lesions in my brain stem.

Rituximab

We’ve decided to continue my current treatment which is rituximab, that I take in a 4-Hour infusion every 6 months. We were all shocked to learn I was about six weeks late for my rituximab infusion, and I guess it fell off the table. After the appointment, the staff and I scheduled it I’m going to have an infusion on Friday in a couple days time. Even though we scheduled at the last minute, they hooked me up. Stanford, shout outs.

The studies on rituximab are 18 months long. I haven’t reached that time yet so we’re going to continue my treatment, even though obviously I’m not healed and I’m still experiencing walking swallowing and thinking problems, among other things.
I told my doctor about this podcast, I told him to check it out. He was pretty stoked actually. I told them that I do this for my own therapy, to get better, which is why I do it, it makes me stronger to do so I love sharing. Boom! I’m stronger now.

Then on Wednesday, the next day I got a new ankle-foot orthotic brace which helps me walk, and not sprain my ankle and have balance. It’s good!

AFO: Ankle-foot Orthotic

But it was kind of a mixed bag. I wore the new ankle-foot orthotic, they call it an AFO.

begin transcript

What’s the Matter With Me? Episode 8.

Yeah. It’s “What’s the Matter With Me?” Episode 8. My name is John. I’m 38 years old. I have MS. I made this podcast to share what I’m going through.

Recap episode 7, it was very hot. And now it’s rather pleasant. I’ve been having a peaceful week with my wife because when it’s hot, I am grouchy. And I also told the story of being afraid of Chad Robertson, being my bread hero. I baked bread by this guy, Chad Robertson. One day, I was at a restaurant, and I was with somebody who was kind of hooked up and the waiter was like, “Hey, over there’s Chad Robertson. You want to meet him?” I was like, “Uh, it’s cool.” I was scared to. I was intimidated, man.

Anyway, he makes great bread. It’s a hard story to tell, a time when I didn’t live up to my own standard. Anyway, Episode 7. Check it out. Last Tuesday, I got my haircut, my beard shaved, lined up. Elvis at the barber shop did me all right. I was getting ready. I had a big week, so let’s go.

Later that day, I saw my MS doctor for my big annual check-up, and we reviewed my MRI, and I’m in radiological remission, which means nothing is showing up on my MRI, which means I’m not getting new brain lesions or other disease activity that the MRI scanner can see. Then we took a trip through my brain. It was kind of cool. My doctor was like, “Okay, let’s look at your MRI.” He is like, “This is how it works, top-down.” He starts going through the images. Wow.

We took a trip through my brain. My doctor noted my cerebellum is pretty clean. That’s like the top of my brain. The big brainy part. But my brain stem has a lot of lesions, and they’re old lesions. They affect my ability to walk and swallow and get up and balance and talk, actually.

All the stuff, I know this stuff because I experience it, but it was interesting to learn that it’s caused by lesions in my brain stem. We decided to continue my treatment, which currently is rituximab, that I take in a four-hour infusion every six months. We were all shocked to learn I was about six weeks late for my rituximab infusion. I guess it fell off the table. We scheduled it up. I’m going to have an infusion on Friday, in a couple days, scheduled last minute. They hooked me up. Stanford shout-out.

The studies on rituximab are 18 months long. The study’s in. I haven’t reached that time yet, so we’re going to continue my treatment, even though obviously I’m not healed, and I’m still experiencing swallowing, walking, and thinking problems, among other things. I told my doctor about this podcast. I told them to check it out. He was pretty stoked, actually. I told him that I do this for my own therapy, to get better, which is why I do this. I share this story because it helps me, makes me stronger to do so. I love sharing. Boom! I’m stronger now.

Then on Wednesday, Wednesday, next day, I got a new ankle-foot orthotic, which helps me walk and not sprain my ankle, have balance and stuff. It’s good. But it was kind of a mixed bag. So I wore the new ankle-foot orthotic. They call it an “AFO.” I wore the new AFO on Wednesday, and it’s not quite the right fit. It’s too tight on my ankle, and it caused a very severe pinching, shooting, piercing nerve pain that is too much to ignore. So I haven’t worn it since I got it because I wore it for a few hours, I started having pain. I was like, “No more of this.” And I need to go back and have the orthotician, Miguel, do some adjustments before I can wear it again, but it’s a new brace, and it’s clean, and it looks better than my old one, and while I was in the orthotics place, they fixed up my old brace to give new straps on it. It looks less janky.

You know, just imagine if you had to wear a shoe every day. It would get janky after a couple years. What janky means is, you know, it just … Look it up, man. So hook me up with that. I’ve got to give a big shout-out to Miguel at the orthotics spot near Menlo Park. They hooked me up with a new look brace. Even though the new one isn’t quite right yet, the old one looked so much better. Thank you, Miguel.

Then on Thursday was my radio show. I looked over the playlists. I played a lot of very questionable music from other time periods like the late ’80s and early ’90s, in which we had a different view of world music. Like anthropology had a different goal. It was like, “We’re in this music. Listen to it.” And they kind of changed it in a way that I think today they wouldn’t allow. They got their hands, like Peter Gabriel and people, got involved with music. They did something awesome, and I love playing it, but it’s questionable.

It was very questionable and complicated, not resolved, all the things I enjoy very much, though. The show was good. Then I went to talk therapy after my show, and we talked about poverty pretty much the whole time. My therapist had been to a conference in Sacramento, and he rode his mountain bicycle through Sacramento, and he saw so many homeless people sleeping on the ground with their bodies pressed to the cement, in like 110-degree heat.

And right now, I’m reading Paul Collier, The Bottom Billion. The theory of The Bottom Billion is that there are one billion people being left out of the developing world. And it’s causing problems for our world, the developed world. For example, the people, there are people in Nigeria and Kenya, failing states, and in Afghanistan and Somalia. So it’s not quite a place. It’s like Africa plus, he describes it.

Basically, generally, he says that we have beautiful nature. We have invented technology, and we have law that makes things fair. So nature, plus technology, plus regulation equals prosperity. And, you know, if you don’t have these three things working together, you can have plunder and starvation. If you don’t think about it, if you don’t have laws, then you just have plunder. People take what they can. And if you have stupid laws getting in the way of the wonderful technology we’ve made, you’ll have starvation because there’s too many people in the world.

And on Sunday, it was my wife’s 40th birthday, my beautiful wife. And we have a bocce ball place in Fremont. There was a brunch buffet and bocce ball. It was good to see everybody. A lot of friends, kids running around. I loved it. Some friends I hadn’t seen in a year and their kids, and my wife looked beautiful, captivating, as always, on her 40th birthday. I’m a lucky man. I love her, and we have a strong bond.

Yesterday was the Fourth of July, and we barbecued hamburgers and hot dogs and vegetables, and my wife made some cole slaw, and everything was wonderful and beautiful. The garden looks great right now. My wife had a birthday party, and conversations made note because of social media, you don’t see people as often, and I got self-conscious. I started thinking, “Oh, am I shocking because I’m disabled and I have a cane?” And I don’t really feature that in my newsfeed.

But the point of what they’re saying is probably that it was good to see people because it was. That’s “What’s the Matter with Me?” Check it out.

Yo, next time!