13 posts from February, 2017

“I feel it needs to be told”: Member Cathy shares a memory

Posted February 21st, 2017 by

Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory.

Here’s what she had to say…


“I have been saving this story for a while. Don’t know why but I feel it needs to be told. It is just a little story. No twists. No turns. No big reveals. But still. A story to be told.

Around this time last year, I ran the very quickest of errands. Fred was at a time of his illness we seldom left him alone. The kids and I we were a team in hanging with him. But we have lovely neighbors close and a prescription was needed, so just for the littlest of time, he was hanging alone. But that isn’t the story.

It was when I returned that the story began. As I’ve noted many times before, Fred went to too many concerts in the sixties. He always said that. Yet, on returning from my errand, I walked in to find Woodstock live in my home. It was 1969 again.

Jimi Hendrix was playing. So was Janis Joplin. Jefferson Airplane. Canned Heat. Still not sure why John Sebastian was there. Guess we will never know.

Those who knew Fred knew he never danced. Cotillion had ruined him. But there he was, dancing as best he could dance. Stomping his foot to Hendrix, occasionally playing air guitar. I dropped the prescription and immediately joined in.

For just a little time, the joy was back. 

Thank you Santana.

I still have Woodstock on the DVR. Haven’t played it since. But I tell this story because it is a testament to ALS. It is a story of hope, of perseverance, of determination. I was always so very proud of Fred, he was my very best friend. Yet it was in that moment I saw his deep abiding strength. I saw in that moment that though ALS had robbed him of his body, it would never steal his spirit or take away his soul. In the year that he has been gone, I write these little stories to keep his memory, my memories strong. I continue to walk the ALS walks. I continue to be loud.

ALS is a beast. We WILL defeat.”

#kickoutthejams #hopeisstrong

Share this post on Twitter and help spread the word.


What do PatientsLikeMe members think about the Affordable Care Act?

Posted February 16th, 2017 by

With a new administration in Washington, the future of “Obamacare” is uncertain. So we wanted to know: What do patients think about potential changes to the Affordable Care Act (ACA)? More than 2,000 PatientsLikeMe members recently shared their thoughts in the largest patient poll on the 2010 health care law.

Previous large-scale polls about the ACA focused on the general population, rather than specifically asking people with health conditions to weigh in. But in this poll, we heard directly from 2,197 members living with a variety of conditions, including MS, fibromyalgia, Parkinson’s, depression, ALS, diabetes and cancer.

“Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.”

‑ Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety

Overall, PatientsLikeMe members have similar feelings and concerns about the ACA as the general population. But patients – who have regular, real-world health care experiences – see some benefits that the general population might have overlooked. Take a look at these snapshots of some key findings from the poll (tap each graphic for a larger view).

No go on repeal

Those who took the PatientsLikeMe poll* were more likely to oppose a repeal of the ACA than the general population**.

Click image to enlarge

What should be scrapped?

When asked which one component of the ACA they would eliminate, if they were forced to choose, patients were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.

Click image to enlarge

 

How helpful is the ACA?

More than 37 percent of patients said the ACA has been “very helpful” for people with chronic conditions, while nearly 20 percent said “somewhat helpful.” Also, nearly half of patients (46%) said the ACA needs only minor modifications.

Click image to enlarge

Strong opinions stand out

People living with major depressive disorder (MDD) as their primary condition were more likely to oppose a repeal of the ACA. The MDD community may have a stronger stance on recent health care policy because of a 2013 rule requiring insurers to cover mental health and addiction issues equally to physical health ailments.

Click image to enlarge

Money talks

Lowering costs is a priority for both patients and the general population. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. And lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.

Click image to enlarge

“I think the problems with this health care program affect those individuals who are caught in the cracks … who do not make enough but do not make so little that they are covered by government programs,” said member Randy, who took the poll. “But we had these problems before the Affordable Care Act. So we need to fix [it], not take [it] away completely.”

What do you think about the ACA? Do you have a different take? Jump into the forum and keep the comments coming. Your voice – the real-world patient voice – matters.

 

* See the full report on the PatientsLikeMe poll.

** General population results came from a 2016 Kaiser Health Tracking Poll.

Share this post on Twitter and help spread the word.