What’s The Matter With Me? Podcast

My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. I made this podcast to share what I’m going through.

Episodes:

WTMWM? – S2, E9: Swimming

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 9: Swimming
  • My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice.  If you need medical advice, ask your healthcare provider.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Episode 8 Recap

Last episode featured a movie review of a short film by Jason dasilva, I wanted to try and go swimming, made a movie for Hoppin hot sauce, and my tomato plants were fruiting.

Shoutouts

Shoutouts to Eric who told me he’d been listening to my pod.  Eric lives in Sacramento so he was digging the Sacramento episode.  Write me by clicking the contact link at the top of the page and I’ll give you a shout-out, I’m easy.

Fall Down Seven Times, Stand Up Eight

Fall down seven times and stand up eight, this is a Japanese proverb. in short it means something similar to “it’s not whether you win or lose, but how you play the game.” It’s different, I thought it was a poetic image and I felt like it could be good to think about. Because I am always falling down and having to stand up and face challenges.

Then I Googled it and I found a bunch of people who have it as a tattoo, and a rock song about it. I had a good idea about it in my mind and then Google image search was just ruining it for me. Sometimes you shouldn’t search for things on the internet. Certainly sometimes it’s plenty to ponder something on your own, and keep the internet out of it. In my mental courtroom, it has all been stricken from the record.

Swimming

On John John’s 5th birthday I went swimming in the pool at my parents house. In the last episode I said I was worried that I wouldn’t be able to get in and out of the pool but I hoped that I would try to get in. My family was there including my Uncle Frank along with my stepfather Dave.

When it was time to get into the pool I got a chair, one of those foldable camping chairs, and set down in it close to the pool. My idea was to sit in the chair, and then I would get from there onto the ground and then crawl into the pool. I set down in the chair. Nami and uncle franc came over to help. They helped me stand up from the chair. “I wanted to get down on the ground and then go into the pool,” I told them. They helped me get on my knees, and it seemed rather easy for everybody and I didn’t feel like I would fall. I crawled into the pool, where I played with my kids and my cousins and it was a great time.  

When it was time to get out, I crawled out, and tried to get up by myself, holding on to the fence. I couldn’t quite get it done, so my stepdad Dave came over and helped me by supporting me on my right side, which is my bad side. I stood up easy. I ripped up my toes on the concrete when I was trying to get up by myself, but it was minor and I cleaned it up easily with a baby wipe.

I sat in the shade and thought about how I had been worried about being able to swim, and how happy the kids were to play in the water with me. Thanks to Nami and Dave and Franc and my family for all the support, it was a happy moment.

Spread The Word

Check out the Whats The Matter With Me? podcast on Facebook, please review it and like it, hate it, whatever — help me get the word out.  You can Contact me here.

still

WTMWM? – S2, E8: The Disability Trap

Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 8: The Disability Trap

My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through.

The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.

Find us on Facebook and please rate us. Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Episode 7 Recap

Last episode, I took MS medicine by infusion and it knocked me out and burned me up, complained about reddit, new brace, I can zip up my own fly, for now.

Shoutouts

Shout out to Patrick– it turns out he found out about this podcast from the time I posted it on Reddit so in fact even though I thought it was disappointing, I got through to people even though I didn’t see it at first. Patrick is a young father with MS like me. He told me that he was inspired by What’s the Matter With Me? and started his own Ms blog on Facebook called Taking It Day By Day- Patrick’s MS Story. Check it out and many thanks and shout outs to Patrick.

I’m just going to keep it rollin’ with the shout outs so shoutouts to Rocky. I know she listens because she responds to the episodes in text messages. She is a librarian and she is trying to get the American Library Association to divest from fossil fuels. She has started to reach out to divestment experts to help amplify her argument from an environmental as well as a financial viewpoint. It’s very persuasive and I will put a link to it in the post on this episode on whatsthematterwithme.org. Shoutouts and thanks for listening Rocky. Click here to listen to her interview.

The Disability Trap

I watched an interesting short film called The Disability Trap by Jason DaSilva, the director of When I Walk, probably the foremost disabled filmmaker. He wrote an op ed in New York Times and as part of it included The Disability Trap, which raised some important questions. Before I get to that I noticed that the movie is about 13 minutes long, I think MS people make stuff that is about 13 minutes long and that’s about right I guess. That’s how I do it too. The film tells how in some states like New York, where Jason lives, the state provides one-on-one in-home care, so he live at home, be more independent and studies show he will have a longer life expectancy. His son lives in Texas, and in order for Jason to move there he will have to live in a home and he will lose a considerable amount of Independence and freedom. The point of his op-ed is that this creates an impossible choice whereby in order to gain proximity to his son he must relinquish his life as he knows it. It’s from the New York Times June 24th edition, called The Disability Trap by Jason DaSilva.

John’s Birthday / Swimming

It is so important tor me to be present as a father to my son, and I can’t imagine what Jason is going through. It’s John John’s 5th birthday tomorrow and we are going to go to Santa Rosa to be with my parents. We will all go swimming in the pool. I might try and get into the pool it’s kind of hard and I stubbed my toes a lot but I think I will try. I hope it is not too dangerous. Maybe I will try getting in on the deep end. I hope I can still swim.

Hoppin Hot Sauce Movie

I made the Hoppin Hot Sauce movie where I spoke about how I have MS but I didn’t let it stop me from cooking. I put it on my Youtube channel, and my customer email, where this month it was the top item. I was nervous about it, but the response has been uniformly positive. The gears are spinning and I am working on a few more videos already. Hoppin Hot Sauce is good sauce and social entrepreneurship and I think there’s something very positive about that. I’m going to keep working at it.

Tomato Salad

I’m starting to get tomatoes off the tomato plants and their are pretty ugly but they are delicious. I hope we get a lot more. We put them in salad with oil and vinegar, basil and salt.

WTMWM? – S2, E7: Wacky Wednesday

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 7: Wacky Wednesday
  • My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice.  If you need medical advice, ask your healthcare provider.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Shoutouts

Shout-outs to Liz who is a DJ at the radio station where I host a radio show on Thursdays.

Infusion

I had my primary MS medicine infusion a few days ago. They hooked me with the IV,  gave me steroids, also knocked me out. I came home and had to make food which was hard to put together because I was wiped out. I need to call a car or something. after infusion i’m toasted. The next morning I woke at 4:30 AM, my torso burning up. Nauseated. Maybe my appointment time was too late in the afternoon, and I got more or less hungover.

/r/MultipleSclerosis fail

I posted about this podcast in the multiple sclerosis subreddit.  I asked people to post their favorite multiple sclerosis podcasts.I was looking for inspiration– I want to find material that I can relate to.  I got several responses but the first stood out.  
So here’s what I asked: “Please post your favorite multiple sclerosis podcast here! It can be a single episode or a series- I’m looking for inspiration.
For my part, I’m a 38 year old husband and father, small business owner, and I have MS. I’m just trying to make it.
I started my own podcast because I couldn’t find podcasts that featured somebody speaking from our perspective. It’s called What’s The Matter With Me? and you can find it on Apple Podcasts or at whatsthematterwithme.org
What do you all listen to? Thanks, John”
From TornaydoTornahdo: “I would never listen to a podcast about MS. I can’t think of anything more depressing than listening to people talk about that in my free time. I already have enough problems related to it. Having it be a presence in my fun/pop culture/whatever time isn’t ideal.  I know other people do want stuff like that, so I hope you get a lot of listeners.”
I think this person was being honest and trying to look at it from both sides, and I appreciate that.  Nevertheless, it’s always rough to get your first response a strong NO. Unfortunately, as the responses came in, I didn’t find much inspiration: no patient-produced material, just information about What Is MS? and like that.  Informative, but not inspirational. It was kind of a let-down– People always talk about Reddit like it can change the world, So maybe I set my expectations a little too high. There is probably another way to go about it that will yield better results.  Because I don’t think this podcast is depressing. I think it’s the story of trying to overcome obstacles. I am a disabled person and because of that, my voice is marginalized. I gain power through the use of my voice to tell my story. Listeners, some with MS and others without, continuously reach out to report that listening has inspired them, offered a new perspective or made them feel better.  I am thankful for that.

Time To Replace My Ankle-Foot Orthotoic

I need a new brace – the straps keep coming open, it’s hard to keep them fastened because the brace is past it’s lifespan.  It’s a carbon fiber brace, and when they are new, they feel very springy but as they get a few years old, the life seems to go out of them.  It’s got dings and scratches, and one of these is developing into a crack. I have an appointment to get it looked at in a couple of weeks.

Can you give me a hand?

I had my fly unzipped on Wacky Wednesday at my children’s school. I must have had it open the whole time I was there, I went to the bathroom and thought, Maybe the reason no one says anything about it is they don’t want me to ask them to help me zip it up.

No Necktie

John John was going to wear a necktie but kiboshed it at the last minute. I can’t blame him, he wasn’t getting paid by employer or judged by a higher power