ALS 1-Year or Less PLUS the Pandemic?: A Roundtable Discussion
A number of our forum members were diagnosed with ALS only within the past year (or even past few months!), and then, the pandemic hit. Dealing with a diagnosis is hard enough, without also having to be sheltered at home; not to mention only speaking to your neurologist via phone.
Let’s have an open roundtable discussion; I invite the newly diagnosed pALS to share their concerns and questions, and then, those of us who’ve been living with ALS, for a while – – to offer their encouragement, solutions, and tips – – so, we all can benefit from our shared experiences.
Here are a few questions to start things off. Add more, please!
- No ALS Clinic visits? Is missing the first few visits to the ALS Clinic (due to being locked down) all that bad? For me, I appreciated meeting the team, but overall didn’t feel the first visits gave me as much information as those in the following years. What do other members think?
- Are you worried about symptom progression? Many newly diagnosed pALS worry about their sudden loss of energy and feelings of stiffness. Being home alone only makes it feel worse and brings on worries that symptoms are progressing. I look back and remember my first year went better when I paced my day to my body’s energy ups and downs. Are you experiencing this? What advice can our members offer?
Now it’s your turn. What are your worries about your ALS, during this pandemic? Let’s get through this together!
Log in to reply.