The ones I’m going to mention are important to me because with people that are going through the same things that I am. One of them is the Southwest Parkinson Foundation out of Lubbock, Texas. There’s the neuro magazine that I like to read, I attend some local meetings, and I enjoy being on a social media website.

My doctors at the Mayo Clinic in Scottsdale. So using the Mayo Clinic website as a resource has been really helpful and also the Michael J. Fox Foundation website and the Parkinson’s Foundation website.

The Parkinson’s Foundation, they’ve sent me tools to work with, little tools like grippers to open cans, a bracelet to identify that I am a Parkinson’s patient. And also I follow Michael J. Fox Foundation, so those are the things that I do. Right now, I don’t feel like I really need a support group because I do have good support around me. But if the time comes that I feel that I need that, that’s exactly what I’ll do and anything else that I can do to make it better.

So, I have a few great resources. I have my family. I have my support group. I have The Michael J. Fox Foundation, the Davis Phinney Foundation. There’s also a daily Parkinson’s news on News Daily Newsletter, that’s very helpful. Also, the number one thing that I have to keep doing this exercise because it’s the only thing that’s been proven to slow the progression of the disease.

The two resources I like is the Michael J. Fox Foundation and the Parkinson’s Foundation. They have a lot of information and links and other people’s stories, how they deal with it so I’m always on there learning. Everyone’s different, so everyone has different ideas and stuff. You can try different things with the patient or the person, your spouse, or whoever it is that has the disease that you’re caring for. And it’s a great help, both of those websites.

I would say that it would be the Michael J. Fox Foundation, had gone to the Unity Walk in New York City. So there, there are specific vendors. So I’m always able to gain additional resources. I look on Facebook to Facebook groups, but I really think Parkinson’s Alliance and Michael J. Fox Foundation are the most useful.

I think the most useful resource that we have found has been Neuro Challenge Foundation. The reason that I think they’re the most useful is because of the yearly events that they do. They bring in everyone and talk about the new developments in treatment, and treatment options and what they mean for you. They bring in different vendors that have tools that are helpful, such as the silverware that helps with the shaking and things like that. They also have support groups that you can get involved with. They help you with research options and just, they overall, have been very useful for us, very helpful. The people that we have met through it, have been a great impact on our life.

The website that I have found most useful is The Michael J. Fox Foundation website, because it has a great deal of information, research, clinical trials, and the Fox Insight website for research. I also use an app called Medisafe, which helps me with my medications. And the Parkinson’s organizations that have websites, I have also used.

Tools and resources that are most useful. Let’s see, there are a couple of women’s groups on Facebook that I find very helpful, StrongHer and YOPD Women’s, something like that. Like you said, that’s just a great source of community for venting, for saying, “Hey, this is what I’m experiencing. Does anybody have experience with that?” Just for sharing stories and knowing that you’re not alone out there for when you’re frustrated with your family not understanding, when you’re awake at 3:00 in the morning because Parkinson’s messes with your sleep cycles, usually there’s somebody else who’s also awake at 3:00 in the morning and you can commiserate about that. Let’s see. Specific organizations. One of my support groups is called SEAYOPD. That’s for Seattle Area Young Onset Parkinson’s Disease. We’re an activity group. We don’t call ourselves a support group. We call ourselves an activity group, and that has just been a tremendous source of support. We are a family. We don’t sit around and commiserate about the things that are wrong in our lives. We celebrate what we are able to do. We go hiking, we take pottery classes. It is an activity group, as I said. That just feels like living to the best of our abilities. So that’s really good. I think those are a couple of examples of things that are useful. Yeah, that’s it for resources.

The organization is called the Parkinson Association of the Rockies. They supply real good basic information as to the proper Parkinson’s foundation and Michael J Fox. But I find now that I’ve had for nine years, I no longer am interested in learning more. If something comes along and cures it, my neurologist will tell me. Other than that, I pretend it doesn’t exist.

The Fox Foundation for Parkinson’s Research is very helpful with the trials that they offer, and the information that they provide over the internet.

I like to use Michael J. Fox Foundation website. It’s helpful to know when there is a new medicine on the market, and I also get information about clinical trials and studies. And they also have podcasts for various topics about Parkinson’s disease that is helpful for me.

I think the most useful resource has been the Parkinson’s Foundation. They have a wealth of resources, information, webinars, and they’ve put on in-person educational events that’s been very helpful going along. The knowledge is power, and that has helped a lot. They also have information for caregivers, and they have medical information if someone with Parkinson’s has to go to the hospital that you can take to give to the health professionals who may, or may not be as well versed in the special needs of someone with Parkinson’s. So, I think that has been the most useful resource, although there are lots of others, and that’s why, because of the variety of information all in one place.

Other resources I have found helpful are websites. Nothing specific. I have, also, access to a community agency in my area. It’s called a Healthcare Quality Unit and they have done a lot of education and training for me about how to deal with Parkinson’s and how to help my loved one. I’ve tried a lot of websites, but I find that unfortunately, most of them are just interested in money from me. When I sign up for a website and newsletters and information, I get mostly requests for donations, so I think mostly it’s been that local organization, the Healthcare Quality Unit, the nursing service, that has provided me with the best information.

We have joined a support group through Facebook for people caring for others with Parkinson’s disease. It’s been extremely helpful emotionally and physically. They’ve given us some great resources and tools on how to help him cope and manage his illness, along with how the family can cope.