My name is John, I’m 38, husband, father to 2, I have multiple sclerosis, and I created the What’s The Matter With Me? podcast to share what I’m going through.

I believe in using the transformative power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Every man is an artist.” In the words of the Spanish poet Antonio Machado, “Wanderer, your footprints are/ the path, and nothing else;/ wanderer, there is no path,/ the path is made by walking.” My work consists of interactions in the public sphere that create new connections in the community.

I have multiple sclerosis and that affects my life and work in many ways. I am the host of What’s The Matter With Me?, a podcast where I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges me with my caregivers, doctors, the disabled community, and community-at-large.

If each person is an artist, and we create the road by walking, then it is up to us to create the world we want to see.

Welcome Whats The Matter With Me? Season 2, Episode 12: Antacids

  • 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 so I made this podcast to share what I’m going through.
  • Whats The Matter With Me? 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

Last Episode Recap

  • Recap- last episode was all about trigeminal neuralgia support groups, grantwriting – writing an essay, KFJC

Shoutouts 

  • Shoutouts to rocky, she’s emailing me stuff, email me and i’ll give you a shoutout

General Confusion

General confusion and the inability to think of anything much at all last week. 

Giving up everything

I felt like giving up on Hoppin Hot Sauce. It was too hard and nobody wanted it anyway, I thought. I went on for some days like this and I think it may have happened the week before as well. I really felt like quitting and giving up everything. And what was so annoying was I couldn’t even have a thought about that, to evaluate it. There were no brain waves.

Action

I started to question my medication., because I was feeling so bad.   Then on Thursday at the end of the day suddenly I snapped into action and begin to realize just how much I had to do. I had to pay some people and sell sauce and balance my books. I got a haircut and I’ll probably cook dinner for the family. I think it’s going to be vegetable pasta with tomatoes and grilled zucchini and roasted red bell peppers because we have all that around. And lots of Parmesan cheese. 

Antacids

On the advice of my therapist, I started taking antacids with my afternoon pills, not an empty stomach, and I saw an improvement.  I no longer question reality all afternoon.

AI Wakeup

What does my day look like? What does my dad look like? What does my d*** look like?  Why doesn’t artificial intelligence know what I need to see first thing in the morning?

Antacids over AI

In short, antacids are getting it done, and artificial intelligence still leaves much to be desired.

Download

Download the Whats The Matter With Me? podcast on Apple podcasts and whatsthematterwithme.org

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

Welcome Whats The Matter With Me? Season 2, Episode 11: Grantwriting

  • 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 so I made this podcast to share what I’m going through.
  • Whats The Matter With Me? 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.

Shoutouts

Shoutouts to Nat – happy birthday! Shoutouts to Patrick, thanks for the vacation tips, shoutouts to shannon – thanks for reaching out.

Last episode Recap

I interviewed free jazz legend peter brotzmann on the radio, I resigned from my radio show, I had a challenging vacation, im working on Hoppin hot sauce as usual

Trigeminal Neuralgia Haikus

Trigeminal neuralgia support group is pretty intense. People have a really hard time with the pain and it comes very hard and pretty much destroyed their life. Their status updates when they put how hard it is into a one-sentence post it is very Stark to read it.. like a haiku from hell

Grant application

I applied for a grant related to this podcast, to help me increase my internet savvy and learn Techniques to spread this message in a louder voice with greater reach. I don’t know about all that but I can tell you it was great to put together an application. I wrote some essays that really clarified why I am doing This. I’m going to share one here but before I do I want to ask that you please don’t judge me I just tried to write an essay and I’m not great or anything I’m much better at talking like I’m doing right now but anyway here it is:

Q: Why are you interested in disability advocacy? What are 1-2 issues that are important to you and why?

Too often disabled voices go unheard. We are discussed but we aren’t part of the conversation. I have always believed that direct action is the fastest way to instigate change. Our voice is marginalized, and using our voice will make it stronger.

As we tell our stories in our own voices, we create our own representation. We’re represented as living a life not worth living, wirh meager intellectual abilities, unfeeling and incapable of love; as purposeless mistakes. This distorted simplification is very unfair to say the least. To avoid it, we must take back the way we are represented. We are our own best advocates.

In 2017, I created the What’s The Matter With Me? podcast to share my experience as a 39 years old husband and father of two, small business owner with multiple sclerosis (MS). I recorded 33 episodes in Season 1, and I’m currently 9 episodes into season 2. I went online to find podcasts about MS from the patient perspective, and they were few and far between. In response, I started What’s The Matter With Me? to tell my story, so that a story like mine would be told. As I’ve produced the episodes, more and more people with disabilities have reach out to me saying how much it has meant to them. I have created a kind of feedback loop: I support others and in turn they support me. I am in greater touch with my disabled community, especially younger people dealing with disability earlier in life when expectations for robust health can be higher. We need to raise our voices in order to be heard.

KFJC Impact

Even though I resigned from my weekly radio program I am still active at kfjc,. Lst weekend I took my family to a fundraiser event at streetlight records here in San Jose and it was good to see people. And then a couple of days ago I went to the weekly meeting where I reviewed some music and recorded some scripts for production spots that we will make for the fundraiser which is coming up in October.just silly stuff asking for money but I’d like to be part of the community at kfjc which is a bunch of burnout to like music just like I do.

One of the listeners from my radio show has since joined the station. she has some disability and says that I inspired her to join. One day she called during my show and told me that she knew someone else who worked at the station and she listened to my show and she heard from her friend that I was disabled. I encouraged her to join the station because it was rewarding and it was something that a disabled person could definitely do and it was a great group, a great and supportive community So I’m very glad that she joined Kfjc and it was great to see her at the meeting.
that’s another episode in the books thank you for listening.

Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 10: Monterey

  • 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 so I made this podcast to share what I’m going through.
  • Whats The Matter With Me? 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.
  • Download the Whats The Matter With Me? Podcast on Apple podcasts and whatsthematterwithme.org

Episode 9 Recap

Japanese proverb tattoos, swimming while disabled. Posted it on reddit and some folks reminded me how scary swimming can be.

Watering the garden

I watered more this summer, a couple times a week. I haven’t been falling which is good. Because the last time I fell I fell through the fence and it looked kind of rickety for a time.  It’s fixed now.

Peter Brotzmann, the Machine Gun

I interviewed Peter Brotzmann on kfjc. He is a wild free jazz saxophone player who is famous for his rough sounds.  He recorded seminal free jazz album Machine Gun. I got him to admit that he plays sweet and tender now that he is older. And talk about butoh

No more radio gig for a while

Resigned from questionable Traditions.  It was a weekly program on KFJC where I played music from around the world, and questioned it’s validity or value, or something like that.  I must admit to feeling some purposeless. However …

I have a purpose, and it is

Selling hot sauce. I’m starting to write regular emails, reach out to customers and grow my business. I did a hot sauce tasting at a local grocery store where they sell my sauce. It was great to get out there, press the flesh and push the product again, like I did at the Fancy Food Show last season in episode 30. it is exciting but also scary.

I tell myself I know what I’m doing, that I have worked at e-commerce companies before. I’m just generally copying what these bigger companies did and applying it in my little business. I try to get out there and to talk with customers, find new ways to sell products every day. I can do it!

Monterey

We went to Monterey on vacation.  It was frustrating because I felt very limited by disability.

Aquarium

We went to the aquarium which is very beautiful and wondrous. I have a lot of childhood memories there, but in the here and now it was hard to move around in the dark with the jellyfish and crowded area very difficult to walk.  I hope my kids had a good time, I did not.  It wasn’t something I could just go and do — it was very challenging to navigate the experience, the crowds, and my disability at the same time.

Cram it in

When I used to go on vacation I would try and cram everything into my itinerary. Now I need a nap. I need to eat food regularly. I can only travel so far.

On the cliff

I love to see things and experience new things, like anyone. It was frustrating for me to be stuck up on the cliff looking down at my childre playing on the beach and not be able to join them because I couldn’t traverse the rocky staircase. It upset me.

Bathroom death scene

The bathroom where I was staying was big and beautiful, open with a jacuzzi and all covered in stone and it seemed like a total death trap every time I wanted to shower or brush my teeth.

I have such a hard time on vacation because I can’t do what I used to. I need to figure out a new way.

Trigeminal Neuralgia

I’ve been going through lots of trigeminal neuralgia.  I’m switching from one medication to another.  It has benefits, like feeling more awake and present, but the changes in medication exacerbate my symptoms.   More about TN in S2, E6: Awaker.

Thanks for listening

Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out. You can email me using the contact page.

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

swallowing heads

WTMWM? – S2, E6: Awaker

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 6: Awaker
  • 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 to my Mom

Mom listened to the podcast, and she told me, “I listened to your pod.”  Isn’t it funny how parents do that?  They get creative with the lingo.  She used to say, Intendo instead of Nintendo, and nowadays she does the same thing with text messages.  She calls them tweets.  “Tweet me,” shje’ll say.  Or, “I tweeted you.  Didn’t you get my tweet?”  Shoutouts to Mom, love you Mom.  Email me using the contact form on the site, and I’ll shout you out.

Recap

Writhing In Pain, Crunked Up or Crunked Out?, Coaches jackets, living in a hair gel air bubble, making music with my old compadre, accessible instruments, its good to be alive.  It’s all in the last episode, check it out.

Drool

“AAA!!” John John shouted as I bent over to brush his teeth, pointing frantically.  I tried to look where he was pointing, but he moved whenever I turned my head to look.  “Papa, you’re drooling,” he said, and laughed.  I looked in the mirror, he was right, I had drool on my chin.  The way things have been going, it was the least of my problems, but its a phobia I have — to become a vegetable.  It’s just fear — my drooling scared John John when I was brushing his teeth, it is what it is.  If I can keep my mouth shut and stay focused, I’ll be all right. 

Through the fence

My most major fall since the last episode occurred in the backyard while I was gardening. First off, I am unhurt.  I fell through the fence when I was trimming the garrya elliptica wavyleaf silktassel bushes. Completely through the fence, I ended up in my neighbor Tim’s yard. The garrya bushes are low-growing and dense, and they were covering my feet.  I reached out a hand to steady myself on the fence, it moved and I fell right through it. Nami helped me put it back together. The posts are cracked and rotting, it seems like the next strong wind will bring it down, but then in the morning it’s still standing.

Video

I shot a video for Hoppin Hot Sauce wearing my new coaches jacket that I got screen printed in Oakland. It felt great and I think it might have looked great, fingers crossed. I read the following script:

My name is John Hoppin and I created Hoppin Hot Sauce from chiles, Meyer lemon, garlic and spices.. I’ve worked in food all my life. I put hot sauce on everything, grilled cheese, lunch leftovers. It gives it a certain Tang that I prefer.
I have multiple sclerosis and it makes it difficult to work in the kitchen environment. I didn’t let it stop me from cooking.
I made Hoppin Hot Sauce to share the taste of my table with yours. It’s all natural with no preservatives, and all good stuff inside. For people who want their food to taste the best, nothing beats Hoppin Hot Sauce.

It made me feel powerful to write and deliver those lines. I hope it will turn out, I’ll share it with you when I get it out of editing.

Less sedation

I’m on less sedation and it’s feeling pretty good to be more alert. Maybe ‘alert’ is a stretch.  I’m afraid of more pain, that the pain will wake up and rear its ugly head.  For the time being, I am relatively awaker.

Live in the present

Live in the present moment..  I had this more-or-less standard revelation listening to music on the way to the farmer’s market.  There were a lot of wonderful fruits and vegetables that deserved my attention, and there will be more next week. If I stay focused on the present, not stuck in the past, or woulda-coulda, I think it will help me be happy. 

WTMWM 35 – S2, E5: Pain is bearable

  • Welcome to Whats The matter with me Season 2, Episode 5: Pain is bearable
  • My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis, so I made this podcast to share what I’m going through
  • What’s the matter with me 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.  However, if you need medical advice, ask your healthcare provider.
  • Download The what’s the matter with Me podcast on Apple podcasts and Whatsthematterwithme.org

Shoutouts

Shoutouts to rocky Nate and joe.

Recap

Last episode episode 4 I was in so much pain. It almost made me angry but I think it was making me crazy. I was just writhing in pain check it out it’s an interesting listen.

Writhing in pain

My last episode was kind of terrible because I was just in pain so much but this episode I can report that my pain level has downgraded from extreme pain to intense pain and maybe even bearable. Definitely bearable I’m going to put it in the bearable category and no one can stop me because it’s my podcast. It’s bearable

Crunked Out, or Up

I’m in the process of changing my trigeminal neuralgia medication. In order to do that I am currently taking both my old medication and the new medication. Since they both have a sedative effect it’s I’m very crunked out. Or crunked up I’m not sure how the direction works there

Coaches Jackets

Coaches jacket. I went to Oakland and pick them up this morning. It was very tiring because like I said I’m totally crunked up or possibly out. It was a lot of driving and I hope I don’t have to drive a lot more today

LA Look

I’m trapped in a bubble in the hair gel, because I’m overmedicated.

Making music

Joe was in my high school band. It was called okra blues and it was mostly Modeled after the Jon Spencer Blues explosion and RL Burnside. It was punk rock blues.  He took his shirt off at the catholic school.

Nowadays We Jam Together

Nowadays We Jam together and I don’t play a lot really anymore. I’ve listened a lot. My approaches different and it is more like meditation and exercising acceptance of the sounds I’m making.

Accessible keyboard

I’m using a ROLI Seaboard, an accessible keyboard with different ways of striking notes and making sound.  It’s good to have an instrument to play.

Good to be alive

It’s good to be alive. I’m grateful for my family and friends. Every day’s a new opportunity.7 things are changing with my pain situation it is evolving in the new medication seems to be starting to work.

 

What’s The Matter With Me? Podcast – S2, E4: Bring It On Or Maybe Not

  • Hello and What’s The Matter With Me? Season 2, Episode 4.
  • My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I’m going through.
  • What’s The Matter With Me? 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.
  • Download The What’s The Matter With Me? Podcast on Apple podcasts and whatsthematterwithme.org

Shoutouts

  • Shoutouts to Patrick and Nat. In the previous episode I talked about answering hoppin hot sauce fan mail was my new favorite activity. But maybe answering what’s the matter with me fan mail is even better?

Recap

  • neuro psych evaluation trippy wormhole. results later in the episode. things are blooming in the garden. hoppin hot sauce has started to exist beyond my immediate purview., out of the vicinity. various pains. shoulder has subsided somewhat.

Pain update – Trigeminal neuralgia pain, pinched nerve, back thrown out

  • My shoulder no longer keeping me up,. trigeminal neuralgia is worse. it hurts to talk, like stabbing electrical pain in my face, it is unbelievably concerning, it’s worse at night. my back hurts but its almost an after thought.

Neuro psych eval results

  • Neuropsych eval results – trouble switching from mode to mode. I score high end of average which is probably low for me. It’s hard to tell whether my brain my mouth or my motor skills are what is the problem

Pinched nerve

  • I have a pinched nerve in my neck probably resulting from some bulging vertebrae that were visible on My Last MRI.

Changing meds

  • Thinking about changing from Gabapentin

Hoppin Hot Sauce apparel

  • Coaches jacket

I Keep On Falling

  • Falling a lot. Because of my brace? Balance? Hurt my back falling in the yard and it has been aggravated by further falling.

Garden heat

  • sea daisies are turning brown

Pain

  • Bring it on, or maybe not
WAIS

What’s The Matter With Me? Podcast – S2, E3: Neuro Psych Eval

  • Hello and Welcome to Whats The matter with me? season 2, episode 3
  • My name is John I’m 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I’m going through
  • What’s the matter with me 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

Shoutouts

  • Shoutouts Bob nat rocky joe . Rate it on iTunes and Facebook

Garden

  • The garden is beautiful. There are a lot of purple Asters and yellow yarrow. Birds are singing and the whole nine

Hoppin Hot Sauce continues to exist

  • I have shipped a few dozen of hoppin hot sauce orders and shipped 5 today

Pains

  • Trigeminal neuralgia – eye socket and cheek bone
  • Shoulder pain –  in my muscles and ligaments

Neuro Psych Eval

  • Neuro psych evaluation. Dr bummer. Told her about how I’m a Good person, good looking and rich — really just very blessed. Her next question, Do you suffer from delusional thoughts? We laughed.
  • Making color patterns with s. the stimulus book
  • I skipped the followup appointment to hear the results, i will have to hear them over the phone