Looking Towards a Brighter Future

[Community Member]

Getting vaccine PT 1 in 2 days. Life as I know it will not change. I’m dreading possible side effects.

[Community Member]

I don’t know yet when I will be able to get the vaccine, but I look forward to seeing my family again.  I have siblings who live out of state and have been wanting to come visit, but they have held off due to Covid.  Family to me is everything, and I am so grateful for their love and support.

[Community Member]

When we get the vaccine, unfortunately we will still have ALS.  I guess the only good thing is being able to see more people again.

[Community Member]

If I get the vaccine and survive possible side effects, my life will still be about the same.  because the vaccine is not a 100% sure thing, many friends still will not come around for fear of bringing me a virus.   Hate to be pessimistic but life keeps getting tougher.   at least I could go to the stores or sit out on the back deck when the weather gets better

[Community Member]

I got my first vac a week ago, no side effects.get my 2nd on Feb 4. Hope to get to see my grandkids after that. I have lots of family and friends who want to come visit but not until all of us have been vaccinated. Saturday is our 50th wedding anniversary, we will be alone but have set up a Zoom session for family and friends to drop in. One rule, no health or political talk.

[Community Member]

When we get the vaccine, then we will know we won’t die from the coronavirus but we will die from ALS.  How lovely!

[Community Member]

Or, to put my “Dagmar spin” on it – –

When we get the vaccine, then we will know we won’t die from the coronavirus, and we can get back to focusing on how to learn to live well (and long) while living with ALS. Yay! 🙂

[Community Member]

Seeing kids and grandkids more frequently who live in another city. Feeling safe to eat in restaurant s with friends. My life is not ALS.

[Community Member]

Thanks Dagmar!  Brilliant, as always!  Thank you for caring so much and being such a great advocate for pALS.

[Community Member]

And Dagmar, I’ll add with Kathy,  the thank you for looking deeper, and seeing more.    :  )

[Community Member]

I have a question. Has there been a consensus on how the vaccine has impacted those with ALS? I have read where there have been some side effects causing healthy people to have tremors and other neurological side effects. My muscle tremors are so bad now, that I am afraid of making them any worse!

[Community Member]

Bill – – it would be best to discuss your question with your doctor… who knows your health history.

There are a lot of rumors going around about weird reactions, but I haven’t heard of pALS reacting negatively. So, just let the rumors fly by 🙂

[Community Member]

I agree, I would talk to your doctor. With the vaccine being new and so much misinformation out there I would want to hear important information from a qualified professional I trust.

[Community Member]

I agree, I would talk to your doctor. With the vaccine being new and so much misinformation out there I would want to hear important information from a qualified professional I trust.

[Community Member]

My husband and I are talking about a road trip from MA to NC and then to CO and NM to visit family and friends. We set up our minivan to sleep in and cook also. We keep a porta potty on board so we don’t have to use public restrooms. We can get fully vaccinated in the next month. We shared the driving on past road trips, but as I don’t drive anymore we will have to pace ourselves differently. We would still socially distance, wear masks, and do takeout when we don’t feel like cooking.
Even if we change our minds and decide to “zoom visit”, it gives me so much pleasure thinking about being “on the road” again. Thinking about what to pack and how to organize everything keeps me “feelin’ free” in spite of the ever-present pandemic and ALS.

[Community Member]

we are playing it by ear, Amanda. Watching the  covid variants.Maybe May/June.