Meet others living with CIDP

Maddy:It wasn't until my senior year, I was running out to meet my mom in the car, I had fallen and it was just really weird because there was nothing to trip on. I was so confused at what had just happened.

The diagnosis process took what seemed like forever, and every day you’re sitting there with your thoughts saying, what is wrong with me? Why do I have this? What does this mean for the rest of my life? You know, the one question that rolls over and over is, why me?

I would tend to have some numbness in my hands. It started about pre-teens. Eventually, I couldn’t even grab a pencil, or I lost all fine motor skills. I couldn’t raise my arms past a certain point because they were so weak. I had to have a lot of assistance to move parts of my body, which I knew before I did fine.

Being diagnosed was hard to absorb. How do you go from being able to do everything by yourself to having to depend on everybody else to give you a bath, brush your teeth, feed you. That’s something that internally I did not take well. Whenever I was in a wheelchair, even though I had received my diagnosis of CIDP, I didn’t know what the future looked like.

Maddy:Having my mom take care of me was special. It’s something that I treasure in my heart. One of the moments that I’ll cherish is we went out to eat one night and she told me, because I was so frustrated in that moment of not being able to pick up a fork, and it just kind of all funneled. And I just sat there and it’s not even like a cry, it’s just tears rolling out at that moment. And she asked the waiter for the check immediately, and we got in the vehicle and she turned around and she said, “Madeline, if you want to cry, you cry. If you want to be mad, you be mad.” She allowed me that emotion that I had been holding back.

Kim:This was a true caregiving situation, and I didn’t know how we were going to handle. I just saw my daughter depleting, going down, and we didn’t know what to do. Everything just seemed to take so long, and she just kept going down, down to nothing, you know, wheelchair bound.

She was misdiagnosed with CMT, which is Charcot-Marie-Tooth disease, and somehow, that just didn’t measure up to her symptoms. So we sought out another neurologist, and she tested her, and that’s when she was diagnosed pretty much with CIDP, chronic inflammatory demyelinating polyneuropathy.

Kim:We were devastated. Was this able to be treated? And I’ll never forget, we were coming home from one of the appointments, and she said, “Mom,” she said, “you know, I feel better because at least we know I can be treated. It may not be curable, but I can be treated and live with it like it is.”

This took away some of her dreams but Madeline being the person she was, she too had to adapt and accept that maybe I need to do something else for right now until I can get to where I need to be to do what I want. She never gave up, and where she is today is because how hard she’s worked.

Maddy:Adaptability is important with this disease. You have to learn how to adapt. You want to continue your life. You want to do the things that other people are doing. There’s nothing stopping you, it’s just doing it differently. So, just because you have CIDP doesn’t separate you from everybody else.

You constantly sit there and wonder, “Why me? Why is this happening right now? And how does this look for the future?” You just take one step every single day and you don’t see your progress in that moment. But looking back now that it’s been 12 years, it’s like, oh, my gosh, I’ve come a very long way.

Maddy:A few years ago, I started asking myself, why not me? Is there anyone else out there in the world that can handle this? Yes, there are people, so don’t ask why me, why me, ask why not me?