There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight supplements. Read on to learn more about her ALS story and why she thinks every person living with ALS should become their own best advocate.
Tell us a little about yourself and how you are doing, Dee.
I am 62, married and a mother and grandmother. I have bulbar onset of ALS. I have always been very active and independent to a fault. I was raised horseback riding and still have a horse. I am told my disease is progressing slowly but of course to me it doesn’t feel that way.
Many people in the community talk about how finding an official diagnosis isn’t easy – what was your experience like?
I actually found out fairly quickly. My symptoms started in April 2013. First doctor thought it was a stroke, second told me it was stress and of course they did MRI’s and blood tests, basic neurological exam and a stress test. Third doctor did an EMG. That was June 2013. Finally hearing someone say it out loud was initially a relief. That feeling didn’t last long.
In the ALS forum, you wrote about your decision to get a feeding tube in February. How has the operation changed your everyday life?
My first doctor told me I had to lose 15 % of my weight for him to order a feeding tube put in. Now understand, my first symptom was slurred speech and within days, difficultly swallowing. We had several issues with this doctor and clinic so we changed doctors. This was January 2014. He asked me several key questions, like; how difficult eating was, did I enjoy my meals or were they a chore, how did food taste, how often did I choke? He said his experience was that doing the feeding tube surgery earlier had better results. The stronger I was the better. We did it within two weeks of that appointment (February 10th). As of the end of May, I am no longer able to eat solid food at all. I have lost about 10 pounds but am currently maintaining well by having my supplement given to me overnight through a Kangaroo pump.
How has being a registered nurse shaped your perspective?
I’m not really sure except that I felt confident I knew what I had before any doctor was willing to diagnose it, and knowing what was ahead of me was frightening. It has made me good at being my own advocate. By being my own advocate, I mean when how I feel doesn’t coincide with what “the professional” is telling me, I speak up and or look for someone who will listen. We all know our bodies better than anyone else and every case of ALS is unique in some way. We have different symptoms, different rates of progression and some have pain, some don’t. Make sure you’re not being categorized. If what they say just isn’t what your gut tells you; speak up! Advocate for what you think is best for you and the way you want to deal with your disease. If you don’t speak on your own behalf who will?
What is one thing you have learned on your journey that you didn’t expect?
I have come to realize that our lives revolve around meals. We are all social beings, and we come together over food and drink. Not being able to do that is really a challenge and even makes the ones around you uncomfortable. Food is comforting and even though I have never been a big eater and I’m not ever hungry, I really miss the tastes and experience.
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