Life with CP: The Healthcare Maze

https://gofund.me/1da663956

I’m an adult with cerebral palsy, which means I will always need some level of hands‑on help to get through each day. Studies show that the lifetime cost of caring for someone with CP can be 1.6 million dollars or more when you add up medical care, equipment, and support needs over a lifetime. I chose an 800,000 dollar goal because it reflects a realistic, bare‑bones version of what it will take to keep me safe, housed, and cared for long‑term—not to live a luxury lifestyle, but simply to have the consistent care, equipment, and assistance that most people can take for granted. ”

Donate to Medical & Living Cost Bridge, organized by Josh Waldrop Hi, my name is Josh. I have cerebral palsy, and over time my mobility and balance h… Josh Waldrop needs your support for Medical & Living Cost Bridge

People have forgotten about me. It’s always, “I’m thinking about you, stay positive, stay strong.” That doesn’t do anything. I know you’re dealing with stuff too, but I’m running on fumes, with no energy or patience left. I don’t need more “I’m thinking about you” messages or more advice. What I actually need is real help with logistics, like rides to my appointments. It’s not suddenly going to get better, and I’m tired of doing all of this by myself. So please, no more questions or advice. If you’re thinking about me, help with the practical stuff instead.
And another thing I don’t want to hear is, “Why haven’t you applied for Social Security disability?” I have. It’s just a long, tedious process. Getting a lawyer does not guarantee approval. I’ve applied multiple times through my own work history, and I’m also applying through my mom’s record. I sent in an application for my mom’s more than a month ago, and Social Security has no record of ever receiving it. Now I have to wait six weeks for a phone interview with them. This is what I mean: I’m stuck dealing with all of this and with medication that doesn’t fully help my symptoms, and the last thing I need is more advice instead of actual help.

Here’s the latest with me having cerebral palsy is a lifelong physical disability and chronic disability. Some people who have physical disabilities do better when there’s real life support is big and they have people they can count on with me. I have people who care about me but when it comes down to the big stuff, the day-to-day stuff I’m on my own. I do all of that myself. I had a milestone today and I had no one there were thre to sharr with it was a personal milestone. Some. so I’m just gonna continue like I do every day the best way I know how.

This is true for me.

Here’s something I didn’t realize most medicines at least western medicine if we take them long enough, we build up a tolerance towards them

Here’s a hard truth tear up your head around getting on the Medicare is not the overall great thing it’s made out to be or you know people think it is yes it does allow you to go to virtually any provider in the United States. You don’t have to worry about if it’s in network anymore or not . pretty much everything is covered when you go to the hospital through part eight and part B covers about 80% of the cost, but there are still limits with it. There’s still a monthly premium there’s still a deductible. They normally take the money out of either Social Security or disability before they send you your monthly payment

 . There’s a hard cap on the number of physical therapy sessions that will cover in a year. That number is between 20 and 24 for Medicare for a lot of insurance plans through the marketplace and private insurance. It’s it could be very from 20 to maybe 30 to 40 and even then you still have to justify it to the insurance company so they would keep on paying for it.  And healthcare system in the United States was built for a short term and healing, not long-term care and maintenance.

Here someone hear something people really don’t talk about trying to get onto disability even the people who get onto it and even if they give Medicare it’s not all kind and dry personal. It’s not livable money. It’s survival money. I’ve also learned that Medicare yearly deductible monthly premiums yeah let’s see pretty much. Any doctor you want in the United States you don’t have to worry about in network anymore, but you saw that I get through and get you know orders or x-rays MRIs and other things
then part B only covers about percent of the cost where the parts or Medicare gap plan and that’s an extra that comes out on your disability too. It’s still complex.

I’m glad I’m finding out all of this stuff now while I’m still relatively young and I could still you know hard to do things to secure my future financially in other means a complex system and move slower than a snail or or turtle.

Your share helps keep me mobile and functional while I wait on disability. Thank you for spreading the word.

Donate to Josh’s Fight to Maintain Mobility and Independence, organized by Josh Waldrop Hi, my name is Josh. I have cerebral palsy, and over time my … Josh Waldrop needs your support for Josh’s Fight to Maintain Mobility and Independence

I’m covering some of my medical costs this week myself, including imaging, but I’m still facing $700–$1,000 in out-of-pocket expenses even with insurance due to ongoing care and therapy. These appointments are necessary and time-sensitive. Any help or shares truly make a difference. Thank you for continuing to support me.

Donate to Josh’s Fight to Maintain Mobility and Independence, organized by Josh Waldrop Hi, my name is Josh. I have cerebral palsy, and over time my … Josh Waldrop needs your support for Josh’s Fight to Maintain Mobility and Independence

Update: I’ve been dealing with complex mobility and pain issues for a long time, and over the past year I’ve finally been able to identify some of the underlying causes — including a hip/pelvic issue that explains a lot of what hasn’t been working. I’m now working with a Neuro PT and a movement specialist, and the medically appropriate plan is consistent therapy plus MRI imaging to guide next steps.

The challenge right now isn’t effort or follow-through — it’s out-of-pocket costs and reliable transportation. This GoFundMe is being used as a defined bridge (6–9 months) while Social Security completes my disability claim, so I can maintain treatment consistency instead of stopping due to finances. If you’re not able to donate, sharing the link genuinely helps. Thank you to everyone who’s supported me along the way.

Donate to Josh’s Fight to Maintain Mobility and Independence, organized by Josh Waldrop Hi, my name is Josh. I have cerebral palsy, and over time my … Josh Waldrop needs your support for Josh’s Fight to Maintain Mobility and Independence