ALS 1-Year or Less PLUS the Pandemic?: A Roundtable Discussion

[Dagmar Munn]

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!

[Dagmar Munn]

All during this pandemic, we’ve continued to welcome new members to the Forum. I’ve noticed that a number of these members are also newly diagnosed… some diagnosed within the past month!

Let us know how we can help you – – questions, tips, or what-about?

Having ALS is challenging enough as it is, without having to deal with a pandemic too. 😉 We are a supportive, friendly and helpful group 🙂 let us be of help.

[Giselle Vargas]

Hi, first of all thank you for welcoming me to the group. My husband Sergio was diagnosed with ALS 6 months ago. We were just getting back on our feet from the diagnosis and boom, the virus hit. It has been super stressful. His disease has started in his chest muscles and diaphragm so I am terrified of him getting COVID19. We are from NY and lost 2 very dear friends to the virus … a husband and wife. We are very lucky in many ways, great family, good health care and insurance but boy has this been difficult. The virus really took a stressful situation and added a whole additional layer of anxiety to it.

[Dagmar Munn]

Hello Giselle, I can only imagine the frustration and stress for you and your husband having him diagnosed only 6 months ago, and then going into pandemic lockdown. Are there any immediate questions or “what about” that you would like to ask our members? Have you received breathing exercises to do? Here are some tips from a blog I write: https://alsandwellness.blogspot.com/2020/01/how-blowing-bubbles-helps-me-breathe.html

What else can we help with?

[Author]

Posts