Reply To: Say Hi To the New Guy
I was diagnosed with CIDP in 2008 and my neurologist was adamant I needed to begin a cardiovascular exercise and strength training program with a trainer. It is difficult because the the disease wants you to be immobile, however, the benefit is exponential in energizing your body to function, adapting other muscle groups to work for those you are losing secondary to nerve dysfunction and loss. It also helps the fatigue and balance balance issues keeping you mobile. In 2017 the fatigue and dysfunction had increased for the need to begin treatment. We began IVIG every 3 weeks and it provides a “spring to my step” and minimizes the fatigue. I would like to tell you it gets better, however, the reality of our disease is it continues to progress over time. This requires proactive measures to keep one walking and moving; strength training and cardiovascular as above, AFO for foot drop as it develops, trekking poles for hikes and long distance trekking. Choose to not let the disease win. I am currently working with an occupational therapist to assess and review options for hand controls in my vehicle. I do not require them yet, however, I am trying to be proactive to keep me mobile and functional. Use the tools available and do not delay because it will only make it more difficult to apply some of the above principles. If you are not getting relief from your current therapy a second opinion on the diagnosis and treatment is definitely worth pursuing. Stay the course, stay hopeful, stay active, and do not let the disease win!