Help me (Josh) gain a little bit of independence back.

Hi, my name is Josh and I am fundraising for a new electric wheelchair.

I have Long COVID and spend 23+ hours a day in bed. This wheelchair will afford me some freedom and independence. But more importantly will allow me to spend more time out in the world with my two favourite people, my wife Laura and our daughter Elsie.

Long COVID

Back when the pandemic first started in March of 2020, I got sick with COVID. Over the following months I began to develop symptoms that we would later discover were Long COVID (no one knew what Long COVID was at the time).

By March of 2021 my symptoms had progressed to the point where I needed to spend most days in bed.

Over the course of 2021 I was diagnosed with a number of different conditions, the three most severe being:

POTS - Postural Orthostatic Tachycardia Syndrome. For more info on POTS click here.

ME/CFS - Myalgic Encephalomyelitis. For more info on ME/CFS click here.

MCAS - Mast Cell Activation Syndrom. For more info on MCAS click here.

Why do I need an electric wheelchair?

I have over 55 different symptoms as a result of these illnesses. Fatigue, dizziness, sweating, food intolerance, exercise intolerance, racing heart, chest tightness, migraines, pain, inability to regulate my body temperature, and much much more.

But one of the most debilitating symptoms is something called PEM (Post Exertional Malaise). Basically, if I over exert myself (mentally, physically, or emotionally) at any time, I can crash. Crashing looks slightly different for everyone but we develop flu like symptoms that last anywhere from a few hours, to a few days, and in extreme cases weeks, months, or even years (usually for me it's 2 days). And each time we crash we sink a little bit further into the illness. Making it that much harder to recover.

Because of this I can't go places, I can't do things, because if I do I will crash. Having an electric wheelchair will give me the mobility I need to leave the house. I still won't be able to go on grand adventures, I will have to pace myself, and be very careful about how long our adventures last. But I will be able to go to the farmers market for an hour; or on a picnic in the park; or for a ride/walk around downtown. And slowly I will be able to build up my tolerances to being out of the house, and using a little bit more energy. The electric wheelchair enables all of this.

Why this specific wheelchair?

I did a lot of research while looking into which wheelchair would work best. In the past I was able to purchase an electric scooter which did help me get around. But there were some major flaws with the scooter that wouldn't meet my current needs. Plus it broke a few years ago and needs a significant amount of repairs

The wheelchair (MAJESTIC IQ-9000 Auto Recline Remote Controlled Electric Wheelchair) that would help me the best is made by a company called ComfyGo. And it has the following key features:

The funds from this campaign will be used to purchase:

What's my medical prognosis for the future?

There currently is no cure for Long COVID, and there are only limited treatments for specific symptoms. I have not stopped searching during the entire time I've been sick for possible treatments and new medications that could help make my life 5% better. I actually have a list of treatments in the pipeline waiting for me to test. And my hope is that at least a few of them will contribute that 5% improvement to my quality of life. I've learned over the years that I need to trial only one treatment at a time, so it might take me the rest of this year to work through the list that I have. But I will not stop fighting to find ways to improve.

But unfortunately the reality for all 400 million (and counting) of us worldwide that have Long COVID, this is going to be a long-term battle. It's one that we're not going to give up on. What amazes me the most about this entire experience is the generosity and kindness of strangers. The number of people who will sit and listen when you're having a bad day. Who will offer tips and tricks on how to deal with symptoms, or how to find the help that you need. I can't imagine how much worse my life would be if it wasn't for help from other people.

And while I can't pour myself fully into this cause (like I have in the past with other issues I've been passionate about), because I have a lot less energy than I used to. I try to be as involved as I can, and to help as many other people as I can.

Conclusion

I wish I didn't need to ask for this help. And I know that things are tough for everyone right now. So I only ask for your help if you're are able to offer it. But my family would really appreciate any help that you can contribute. I promise to share some pics from our adventures if the campaign is successful. And I promise to keep fighting to find ways to get better, and I promise to keep fighting to help others who have been impacted by this terrible condition. The pandemic is not over. For so many of us it's been going this entire time.

Thank you!

Josh, Laura, and Elsie (and Piper, PangurBan and Noodles)