3 posts tagged “music”

“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

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The ‘something’ that helps you forget

Posted April 24th, 2013 by

If you’re living with a life changing condition, it’s sometimes hard to take your mind off it. We become consumed by medications, side effects, symptoms and everyday living. But every once in a while, we find something that can take our minds somewhere else. And for a time, no matter how brief, all those worries just drift away. For your fellow PatientsLikeMe community member Parkinson Pete, that ‘something’ is music.

“I have been absorbed in my music project…I realized being that absorbed I really, for the first time in years, forgot that I have PD.” -Parkinson Pete

 

Parkinson Pete was diagnosed with Parkinson’s Disease (PD) back in July of 2008 and he joined PatientsLikeMe shortly after. Just this past February, he started a forum thread (I have found a way to reduce PD- do something else) talking about his new music project and posting some of his great recordings for all to hear.

shawden

What happened next was quite simply…awesome. Parkinson Pete was playing every instrument in his recordings except the drums. So fellow community member Shawden offered up his skills as a drummer. And the duo was formed!

Probably the coolest part of it all is that one lives in Washington, the other in California. Parkinson Pete records the guitar and vocals, and then sends it over to Shawden to add in the drums. Their songs are posted up on YouTube and they share them in the PD Forum. Don’t forget to check out the duo’s latest hits. Two talented people discovered and share their love for music on PatientsLikeMe, and aren’t letting PD get in the way. Can’t wait for their next post.


Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica

Posted March 27th, 2013 by

Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9.  Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis.  What difference has that made for her?  And how has she started to take control of her treatment course as of late?  Find out that and much more in this inspiring interview.

Erica Psoriasis Patient CROPPED

1. Tell us how you were treated by classmates and school nurses growing up.  

The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.

2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.

I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.

3. What’s helped you develop the confidence and love of life you have now?

I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.

4. What’s it been like to connect with other psoriasis patients at PatientsLikeMe

Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!