“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.

For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of different topics: getting diagnosed, family history, Medicare Part D and his service dog Catti-Brie.


Can you tell us a little about your first experiences with MS and finding a diagnosis?
My first experience with MS was through my grandfather on my mom’s side of the family. He was diagnosed with MS in 1957 and passed away in 1996 due to complications during hip replacement surgery. After that, we didn’t think or even know there was a genetic element to MS until I was diagnosed 3 years ago. I feel because I had a somewhat classic MS progression and a family history that my diagnosis came relatively easy and quickly. It took only a month of testing to determine MS. It did help that I have a great neurologist who specializes in MS. I think the diagnosis hit my mom and grandmother harder than it did me. When I started to get symptoms I looked them up and saw that they were a possibility of MS, and after talking to family about my grandfather’s progression, I was ready for the news. Don’t get me wrong it was still a shock, and I cried with friends, family, and my fiancé. I took a deep breath and recovered quickly. I had a wedding to put together. I was married to a wonderful man almost 30 days after my diagnosis, which I know helped me get through the grieving process as quickly as I did. My husband doesn’t totally understand what MS is, but what person does that doesn’t have this disease? But, he has learned how to become a wonderful caretaker.

You’ve posted a bunch in the PatientsLikeMe forum about disability insurance and working with MS. Can you tell us a little about your experience with that?
I wouldn’t call my experience with social security favorable, but I haven’t had it as rough as some other PatientsLikeMe members. For me, the key was knowing as much about the system as I possibly could. I read many members’ advice and experiences on the subject as I could find. I had long conversations with my neurologist and followed many of his recommendations. I also got on the social security’s website and got as much information as I could absorb before finally filling out my application online. My plan was to apply, and then if I were rejected, I would secure a lawyer to contest their findings. It turns out that gathering all the knowledge that I did paid off. I was approved 7 weeks after I submitted my application online. Now I try to share the information and experience with other PatientsLikeMe members. I also just went through the process of applying for Medicare and getting financial assistance on part D (prescription drug plan). So, now I have even more information to share.

Jeanette, the PatientsLikeMe MS community moderator, mentioned that you have a service dog. How has that changed your daily life?
I probably could fill a book on how having a service dog has changed things for me, but I’ll try to keep it short. I have had dogs as pets almost all my youth and young adult life, but having a service dog is a whole other thing. Let me start by telling the story about how Catti-Brie came into my life. It started with a friend posting a picture of the cutest puppy I’ve ever seen on Facebook and a sad story about how she was rescued from druggies trying to trade her for drugs. I took one look at her picture and her beautiful eyes, and was instantly in love. But I regrettably posted that I would love to take her but I couldn’t. After a little while I couldn’t get her out of my mind, so I turned to my husband and we talked about how we no longer have a reason why we didn’t have a pet dog. The main reason was that we both worked and didn’t have the time, but now I’m no longer working and am on disability. So I contacted my friend and we took ownership of this tiny puppy. At first we were not sure of her breed, just that she was the cutest thing. Catti-Brie’s first visit to the vet is when we discovered her breed; the vet was excited for us. Turns out that Catti-Brie is a Catahoula Leopard Dog, a rare work type breed. I started off training her with basic commands and realized how smart she is. I contacted a few places and our local humane society got me in touch with a trainer that trains service dogs for disabled veterans. She agreed to help me train Catti-Brie as a mobility service dog. Almost 2 years later, Catti-Brie is a fully trained service dog. The training process has created an incredible bond between us.

How has she changed my daily life? She keeps me going. Just having to care for an animal keeps me motivated to get up and do things instead of just sitting there watching TV. Besides feedings, we take a long walk every morning before the sun is fully up. And a couple smaller walks throughout the day, and the occasional bath gives me an extra workout. She is trained to help with things around the house like laundry, so I don’t get as fatigued as quickly. When I am fatigued and my husband is at work, I know I can count on her to get the necessities for me. She is trained to aid me in getting up or getting help if I do fall. When she is with me, which is all the time, I feel secure. And the companionship that she gives is irreplaceable; I would be lost without her.

Are there specific tools you really like to use on PatientsLikeMe to track your health?
Right now, I think my favorite and most used tool is “Labs & Tests”. It gives me a place to record the tests I do at home, like my blood pressure. It also gives me a place to record results from tests done in my doctor’s office, and gives me a way to compare those results from visit to visit. Of the other tools, I use them, but I don’t get as much out of them. Maybe after I have had my condition for some length of time I can better see the value of those tools. I have tried to search for some trials with the Clinical Trials Tool but I live in a small rural town and to be part of most trials I would have to drive to a larger city. A tool I would like to see would be an injection site monitoring tool. When I was first diagnosed and put on REBIF I would track the site locations in a logbook, but that became cumbersome. So, I just did it with memory, but that became problematic as well. I kept losing track of where I injected last. Eventually I changed MS treatments to Copaxone, which was a little easier to track because it was daily, no weekend breaks to forget locations. But I still sometimes forget where my last injection site was, so I started to use the injection tracker on the Copaxone website. What I would really like is to be able to track my injections on the website where I track my medical things already. It would be a one-stop record keeping spot.

That’s great feedback Ted. How about connecting with others on PatientsLikeMe? Has that impacted your experience?
I have always been somewhat of a loner. As a child, even though I had 2 brothers, I mostly did things on my own. I have always tended to find the answers on my own. I would ask for help only if I exhausted all other avenues for the answer. But with MS there are no right answer, there is no “point A to point B” answers. With MS there is only antidote answers. You have to rely on others’ experiences. You have to piece together the puzzle pieces in hopes that it will work for you. PatientsLikeMe has given me a place to browse through other patients’ experiences and trials. It has given me a place to learn and share. PatientsLikeMe has helped me to learn that I’m not alone and that MS is not a disease that can be tackled alone. You need to rely on others, their experiences, their knowledge. PatientsLikeMe is a place you can curl up into the comfort of others who know what you are going though. They understand.

For others who might be recently diagnosed, what’s something they should know?
One of the first things that my neurologist said to me when I was diagnosed is that MS is not a death sentence. That is a great thing to know but I would also have liked to know that I’m not alone with this disease. Before I was diagnosed, I didn’t know anyone that had MS. Afterward I heard a lot of “OH, my so and so relative has that…”. It took going to a seminar put on by a drug company to finally meet some live people with MS. It was a relief to know that there are others who have this disease. It was also an eye opener to see so many different people from different walks of life that have MS. It also helped to put the progression of MS into perspective. In a room full of other people with MS you can see just how random this disease’s progression can be; some people who have had the disease for 20 years and seem fine, while other people diagnosed a year ago are in a wheelchair. What I guess I’m trying to say is that even though at times it seems like you are alone with this disease, and no one will ever understand what you are going through, you are not alone. There are people out there that want to connect with you and share each other’s experiences with you. Reach out to the different groups and forums and don’t try to do this alone.

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