I have been accepted to participate in a study at MD Anderson titled, “Optimizing Neurofeedback to Treat Chemotherapy Induced Peripheral Neuropathy.” That’s a mouthful! Basically, they are looking at neuropathy treatment options, and we will be making history. In case you don’t know what neuropathy is, you can read more here. My mom had diabetic neuropathy, and I never fully understood what she was experiencing. Now I do.
I don’t talk abut side effects of my treatment much, but when this study came up I thought it might help. My mother’s neuropathy was much worse, but I do have chemo-induced peripheral neuropathy in my feet, legs, and hands. My fingers tingle and itch at random times throughout the day. It makes playing the piano and typing on the keyboard a bit of a challenge. My legs feel like I have 20 pound weights tied to them, so I walk slower than my usual slowness. I sometimes have trouble with balance because my feet do not fully feel the ground beneath me. I have not fallen so it could be worse. And my feet feel like I am wearing socks with gravel inserted just south of my toes. Even when I am wearing sandals or walking around barefooted.
This study is looking at whether medication alone, neurofeedback alone, or the combination of the two has the best effect on peripheral neuropathy. At least that’s my understanding. We will be randomly assigned to the three groups listed above. Since everyone in the study gets some form of treatment for neuropathy, I agreed to try it out. It will last about a year and I will need to come downtown 2-3 times during that period. All the rest can be done from home. They hypothesize that since neuropathy is a neurological disorder, neurofeedback should help. They believe the treatment will retrain the brain to re-connect the nerves where they are intended to feel. Pretty cool when you think about it. Our brains are amazing creations.
I am here today to do the initial screening, and find out what group I’m in. Tim was kind enough to drive me downtown, and we actually got here early! My arm feels naked. This is the first time I’ve been to MD Anderson at any facility when they didn’t give me an armband with my MRN and DOB on it. No armband at all.
During today’s appointment they will be taking an EEG. It will be my first time doing that scan as well. This entails wearing a cap, which will contain a conductive gel on the inside. This gel will be coming in contact with my hair and scalp. They say the gel has no odor and comes out easily in the shower. I told Tim I might have a funny hairdo when I come out. They will be doing some brain mapping.
All expenses, including parking if I drive myself here, will be covered by the study. They will ship me the neurofeedback equipment (if I’m in one of those two groups). Unfortunately, it only works with Windows on a PC. If you know me at all, you know I’m definitely a Mac person so I will need to get a PC with Windows to participate in the study. It could be helpful to have an inexpensive computer for back-up and for guests to use. It’s either that, or I have to come downtown three times per week to do the treatment.
I’ll keep you posted on how the treatment goes, as well as the study if I am privy to the results.
À la prochaine…hasta la próxima vez…until next time!