I’ve explored many, many resources, including in-person support groups, online support groups, Facebook groups, fundraising groups, through the MS Society. I wish there were… I know they are in existence, but I wish it was more widely spread to have a support group for caregivers. I know that their experience is definitely different than the patients, but it’s just as meaningful. I think that for them to have an outlet would be a phenomenal thing. I also wish that there was a resource that you can give to friends and family to further explain specific details of my condition, because, as previously said, and what is frustrating, it’s explaining my condition to others and what I go through. If there was something that people could independently explore and really get some good information about it, that would be very helpful to me for them to understand what I’m going through.

I believe that there are resources available. I just have not explored them all. Of course, we would all like our own feelings validated, but that’s not necessarily the case because our own personal feelings are not necessarily correct. So it is a little bit frustrating in that respect. I do tend to listen to my physician, my MS specialist because I believe him to have the most up to date information, be it good or bad for my condition. But I do think the resources are out there, maybe a way to notify people of their availability or some entity that would differentiate the valuable resources from the quacks out there.

I really wish I could get a hold of my neurologist easier just because I’ll call and have to leave a message and then not hear back from him. I mean, there’s the expensive medication so they provide like options for cheaper medication, but even then 30,000, 60,000, whatever, thousands of dollar medication, I really wish it was cheaper. That’d be nice if it was cheaper to start with. I’m not sure. Honestly, I’m not sure.

A resource I wish existed for this condition is a disability assistance program, where people help you with your paperwork and things like that. I had the opportunity through my old employer to use a company like this, but my old employer paid this company. I would never have been able to pay this company out of pocket because it was such a large amount. Having that type of company around to help people, I think, would be a wonderful resource for people like me.

My ideal resource would be something like when you go, for example, your utilities online and you want to get help and they’ve got the online automated Chat and you type in your question, and it goes through their system and it screens sort of what you’re trying to ask, and then it comes up with answers. That would help me because instead of my searching through tons and tons of different topics if I could have something automated, that would give me the answer that I’m looking for. That may be oversimplified. But that would be I think especially for newly diagnosed. If they could just type in their question and the answers would be populated and come up to help someone from a database that would have to be very well tested to be able to be useful and reliable for someone.

The best resource or support thing, I would say the better doctor. One that listens or a better healthcare provider insurance-wise, that would actually give her the medications that the doctor is prescribing. That would be the best thing.

Well, I’ve never looked into resources. I’ve never known anybody that has MS until recently. My mechanic has MS. We’ve talked. So I honestly don’t know. I did find out last, almost a year ago that there was an MS society near me. I’ve been to two meetings maybe. But now that this COVID happened, then there hasn’t been any, so I don’t know anything else other than I’m not sure of resources. I don’t know what kind are out there.

A resource do I wish I had help with? I think at 41, I’m okay with everything I have going on. I live in an apartment so there’s not a lot of help needed here and as I get older, I’m sure I’m going to need more help but right now I’m okay and that’s okay.

I wish my insurance would pay for a home housekeeper to come in and clean my house and help me out with those kinds of things. Not like the whole house, but just like vacuuming, mopping, and dusting. That would be a real great benefit for me because it’s hard for me to do those things, especially the vacuuming. It throws my balance off a lot. If they can provide a maid or cleaner to come in just maybe once every two weeks just to do those things, that would be a really big help. Also, I would like physical therapy exercise that I can do, maybe like an app or something on my phone. Because of COVID I can’t ruin to the physical therapist office and learn new techniques. So if something was provided like that on TV or on my phone that I could follow, that would be nice. I’m sure there’s something out there, but I don’t know if there’s anything specifically designed for people with MS to use and I don’t know exactly what physical therapy exercises are the best thing for people with MS.

Oh my goodness. I live in a real rural, country, southeast Oklahoma area. And doctors … Doctors that understand the condition, understand how the treatments … That don’t look at you like you’ve lost your mind. And transferring doctors, because doctors here come and go like water. This is kind of a pass-through place for doctors. So, every time you get a new doctor you have to go back in and you have to explain it all to them again. And they all want to run the same damn test you’ve been through 100 times. And they all got that same, “Oh, we can cure you,” attitude. But they want to run the same test that you’ve done 100 times. You know the results but you try to tell them that and they look at you like you’ve lost your mind and you’re crazy and you don’t know what you’re talking about. But nobody knows our health like we do. And every case is different. Every case is individual. And what works for one person may not work for the next. But they don’t get it. They don’t understand. So, something that every doctor will understand, every doctor can look at the test results, it should be across the board. If I had this test this year, it’s going to have the same results next year and it just don’t get better; it just gets worse. So, a continuarity of care that every doctor understands and can access would be amazing.

I’m unsure because there are so many resources that are available, so no matter what you’re looking for, you can find, Oh, now, you know what? I need something that is like housing. Housing for people with multiple sclerosis, or an organization that will help people that are living with multiple sclerosis to find housing. Something like that. That’s what I would be seeking, or I wish was available.

Oh. As far as resources, it just does depend on the person. A lot of times I trust the doctor a little bit more than I trust just Facebook groups or whatever have you, so those are the places I turn to. But I’m not really sure that there would be an ideal support system or a ideal resource. And if so, I can’t really think of it at the moment.

I’d say, I wish that there was a certain website that was a financial resource for different treatments for MS, that just really helps you to make sure, if you’re not insured and stuff, that you are able to get that treatment, and different kinds, and financially help with the being able to see different kinds of doctors and specialists because of course there’s all kinds of underlying things that go on when you suffer with MS.

There’s stuff that I haven’t found yet. It’s more of the one that helps with people that have MS that don’t have anybody to help them. The ones that don’t have no family, or have family that are not willing to help them. Because there are no home health organizations or no assisted living place for people with MS. It’s some with Alzheimer’s or something like that but there’s no home for people with MS so they can stay and get assistance.

To be honest, I think that everyone has done a really, really good job at trying to promote what MS is and what MS does. I find it kind of difficult on some of the rarer aspects of MS because I believe I have some of the rarer aspects. When I say that, I’m talking about having problems with my hearing, Meniere’s disease, or just a lot of tinnitus. And I just really don’t know if that really, truly connects with my MS or if it’s just something else I have. And also, neuropathies, currently I have a bunch of neuropathies and I believe that it’s probably from long-standing MS, but I’m not quite sure. So those type of things, the doctors don’t even quite know. It’s just things that you’re having and you don’t know if it’s from regular disease or if it is from the MS. That’s a hard question. And that kind of thing, I would like to get more information on. But at present, it’s just a guess whether it is connected or isn’t.