I have all the support systems I need under the circumstances. And I know that you’re looking for something more complex. But my attitude to my situation is very good.

I’m in a small area in Panola Texas, and I wish it had more resources, like local meetings closer to me, Rock Steady Boxing exercises, specifically for Parkinson’s, and just that.

For now, I think I have the ideal resource, but as I progress that might change. But for now, I’m good.

We haven’t had a problem with finding the resources that we need as we need things, which I haven’t needed any special…Like a wheelchair. So far, I’m not that far gone, or even a walker. So I don’t think that we’ll have a problem finding the tools that we need when the time comes. I mean they’re everywhere. A medical supply place is just right around the corner from me. To be honest with you, I don’t think that there’s another ideal support resource out there that is any better than what I’ve already got, which is the Parkinson’s organization and Michael J. Fox organization. I mean that’s, I can say, as good as it’s going to get for me right now.

I’m not really sure how to answer this. I think I have the best possible things available to me. It would be nice to figure out if I’m lacking in any trace minerals or vitamins or anything, if I had a diet coach that could tell me each day what my body is missing, what I could do to improve and slow the progression, and also something that would let me know every day what’s on the horizon, what’s coming up and just to keep giving me hope that somebody will find a cure for this.

I wish there was more information on resources for a caregiver or someone to come in and help with daily tasks. I’ve always found it a challenge to find someone that can deal with somebody with Parkinson’s or something of that nature to come in. I have found people to come in and help, but they’re not sure how to manage the disease or the patient when she’s having problems or things of that nature. I just wish there was more support somewhere out there in regards to that.

The resource that I wish I had were some organizations that can help with some day-to-day assistance. If she needs to go someplace, whether it’s to a pharmacy or to adult day programs or things like that. Where you don’t have to pay an aid for four hours of time. That it’s more like a transportation service, but not a medical transport. Because at one point we were looking for someone to assist us to take off some of that pressure of us having to drive her all different places. But she can’t take Uber and she can’t use a taxi service because you want someone to assist her in and out if possible. So those resources are the most difficult. It’s like being on a wild goose chase. So if there was an app saying here, someone can help us, that would be most helpful.

At this point in time, I don’t know exactly what resources would be ideal. We are still figuring it out day to day, and as of right now, everything that we’ve needed, we’ve been able to find those resources. We’ve been able to find the help that was necessary. We’ve been able to find the support that was necessary, people to talk to you about treatment. As of right now, I feel that we’ve had the ideal support that we needed. I’m not going to say that it’s going to stay that way throughout her whole course of this disease. However, as of right now, I feel that the Neuro Challenge Foundation, especially, has been absolutely the best support resource for us.

I don’t know of a specific resource that I wish I had to help me manage my condition, because I think I have found everything that I need at this particular time. My ideal support resource probably would be something with more counseling probably available or information about activities that might be in my local area.

Resources I have not been able to find. For young-onset Parkinson’s, I think there is not enough in the way of resources around relationships and sexuality. Parkinson’s has been tremendously difficult in my marriage, and there has not been a lot that has been specifically helpful around that. So, what would the ideal support resource be? One, to just acknowledge what the experience is, how spouses are affected, how sex drive is affected, how communication is affected, that dance between are you spouses, or is this a caretaking relationship, how you communicate, and how you navigate that. There’s basic guidance about you need to focus on communication and connection, but there’s not really a roadmap for how to do that, or what to do if you’re struggling. So those would be things that I would suggest would be ideal resources. Thank you.

Support group is currently not available because of the pandemic, but I’m looking forward to that resuming afterwards. It will help by learning what other people do in similar situations.

I would like a device to monitor my hormone levels. I would like to record every day and see if my dyskinesia has to do with anything with my hormones, and I think it would help to see if there’s anything we could do about it by taking hormone replacement therapy.

Actually, I think there are great resources around. I haven’t used a lot of them because some of them are just too expensive right now, or he’s not quite to the point where he needs them. But I think that the ideal support resource would be like a Parkinson Foundation. The idea of the fact that there would be a lot of resources within one agency so you wouldn’t have to go from one place to the next, to the next to find different things. I think that would be ideal. And some resources, there are some agencies near here that come close and they try to provide in home care adult daycare situations different kinds of resources. So I think we are blessed to have a wealth of resources in this area, at least.

My biggest wish about support would be actual professional respite care. It would be more access to transportation resources to help my loved one get to places where she needs to be. It would be someone who I could contact to ask specific questions about symptoms and concerns I have for my loved one. And more emotional support resources.

A resource would be to have someone local as a support group. Currently, there are no local support groups. Another resource would be to have other people living with Parkinson’s because we come from a small town, so it’s difficult to find others who are also struggling with the same disease as him. So it’s making him harder to cope with his disease and his acceptance to it.