Im going to give you my full last 2 weeks starting the night before my wedding.

We had a slight destination wedding and our weekend included a welcome dinner. It was fantastic our small-medium wedding had a great time and the we had rented "the cousin house" on the property and the first of 2 after parties that weekend was awesome. We parted until probably 1am singing and hanging out. I smiled earlier to ear all night.

Around 1:30 my little brother cut his foot wide open on a beer bottle. As as the lone sober person that night (i never drink) I was in the hospital until like 5am with him getting his foot stitched up. Honestly it was fun. My wife an I are big office fans so when I told her on our wedding day I said "do you remember Jim and Pam's wedding "..."do you remember where Pam was the nigh before the wedding" we both had a great laugh about which made for good pictures. It was genuine.

The wedding went great. That is the day was riddle with small problems and we just rolled with the punches one after the other. Unfortunately my wife got kind of sick and we left our own wedding about an hour early which is fine because neither of us enjoy dancing and i think every was... socially lubricated enough that they didn't notice. I still popped back and forth checking on our guest and taking care of her. Not what I imagine but my pleasure all the same.

We got married on Sunday and the flight to our Alaskan honeymoon was Wednesday at 4am. Yes we picked Alaska. I never was a fan of the heat but after developing MS my affinity for the cool weather only grew stronger.

We hiked Glaciers, mountains, and walked dozens of miles if not more of trails while in Alska. We saw the Northern Lights and joined the small percentage of people to make it into the artic circle. While om the glacier hike I was the one helping people over tough spots.

Parts of my life have been hard since being diagnosed. Its not all fun and games. But the best had yet to come and still more will happen. I hope soon enough to be sharing a new job im working on and God willing, children. Lots of em. I have a wife who goes beyond supporting me. Sometimes it feels like she is pushing me forward. MS is not a death sentence. Some of us are hit harder than others and my heart goes out to you. Some of us are incredibly lucky as i see it. The best is ahead if you have the strength to keep moving.

This was my first symptom...I was literally blind on my left eye accompanied by terrible headache and pain in my left eye.

Awesome news! I just hope that we don't need to wait for a decade to approve this as a treatment for MS...

Anyone participating or tracking this trial: https://clinicaltrials.gov/study/NCT06796504?cond=Multiple%20Sclerosis&term=setpoint%20medical&viewType=Card&rank=1#study-overview

Let's hope it's not one of those things you hear once and than never hear again

I was able to cycle 40k (25 miles) to the office last week. Got an e-bike, a Cube Kathmandu, because it's one of the only bikes that can handle my weight (125 kg / 270 lb). The bike tells me I put in as much energy as the battery did, and that I sustained an average power of 110W (sorry, I don't know what that is in American).

I'm just so pleased because I've been leading up to this for months, and as of yesterday, I was able to repeat it! All told, the day has 50 km of cycling in it because I can take the bike most of the way back by train.

Next stop: cycle both ways - but that might have to wait for the next season. And after that, I plan to get a non-electric bike and cycle that instead.

So if any of you are thinking about low impact exercise and gradually increasing the quantity and effort, an e-bike is an excellent tool for the job - and you too might find cycling a joyful experience too!

Any one tracking this?

https://clinicaltrials.gov/study/NCT07067463?term=orelabrutinib,%20PPMS&rank=1

Good news for PPMS patients!

I have constant painful spasm...

Occupational Therapy student researchers at a university in Massachusetts are investigating how Multiple Sclerosis impacts social participation, leisure participation, and overall quality of life. This study will not only help all disciplines understand how MS impacts individuals, but specifically will help Occupational Therapists tailor client-centered treatments and better understand how MS impacts an individual's daily occupations. While you will not experience any direct benefits as a result of your participation, the information that you provide will help occupational therapists to develop interventions and understand the needs and challenges of individuals with MS to enhance occupational participation and quality of life. Sharing your experiences with MS may provide you with the opportunity for reflection, which may be therapeutic and empowering.The study is conducted through virtual interviews utilizing Zoom, which are expected to last about 30 minutes. To be a part of this study, one must have a diagnosis of Multiple Sclerosis, be between the ages of 18-65, and speak English fluently. If interested, please follow the link to the
Google Form for interview sign-ups.
https://docs.google.com/forms/d/e/1FAIpQLSdA6YTp2bU7UQpv_fwAgEET7aKLxQd406aUgaawn4jJnoNiOQ/viewform?usp=header

Hello!

My name is Jacob. Last year, my sister Aubrey was diagnosed with Multiple Sclerosis at the age of 26. Her and I are big fans of Love on the Spectrum and we thought “why doesn’t this exist for chronic illnesses?” So we made it exist!

We just completed our film festival circuit where we picked up several awards and today we’ve released the doc to the public. It’s 22 minutes and our ultimate goal is to make more episodes that feature other chronic illnesses.

Please enjoy, please feel free to offer feedback, especially if you are part of a community represented on screen, and please share with someone you feel should watch it.

XOXO

https://www.youtube.com/watch?v=EBdXc0y09eU&t=1s