22 posts tagged “patient blogger”

My War with Psoriasis: An Interview with British Blogger Simon

Posted December 17th, 2012 by

Welcome to the latest installment of our “Spotlighted Blogger” series.  Earlier this year, we focused on psoriasis bloggers, including Lissa, Alisha B., Jessica and Joni, and today we’re pleased to add a male perspective to the mix.  PatientsLikeMe member Simon’s witty blog, entitled My Skin and I, discusses his decade-long battle with psoriasis, a chronic autoimmune condition that can cause itchingrashes and plaques.  What has he learned along the way?  Find out that and more in our interview.

Psoriasis Blogger Simon of "My Skin and I" Relaxing and Enjoying the Holidays

1.     Why did you start blogging about psoriasis, and what’s the reaction been?

I started blogging as a way to vent my feelings. I don’t really talk about my feelings, even to my family, and found it very hard to explain what was going on in my head and in my life.

When I spoke to people about psoriasis, I kept a lot back and, to write it, even if I hadn’t published it, was a release. I decided to make it public partly as I needed my family to understand what I had been going through and also to help raise awareness.

The reaction has been positive.  I have been told I made a few people cry and even had other friends suddenly announce they also have the condition. This showed me that I wasn’t alone and that there are many people that feel the same way and hide their emotions. I am quite pleased that I haven’t had much in the way of sympathy as that’s not why I started the blog.  The worst thing is people saying, “you poor thing.”

2.     You write about your “war with psoriasis.” Are you winning these days?

Ask me this question on different days and I might answer it differently each time. I would say generally yes, although I have lost a few skirmishes lately. The last couple of months have been extremely stressful due to personal and work issues, which hasn’t helped, and psoriasis clings on to moments like that. Also, with the cold weather in the UK at the moment, especially with the sudden freezing weather, my skin is quite sore and dry despite using my creams.

My skin is still at a manageable state, though, and even though it has got a little worse over the last week, it’s nothing I can’t handle. I just have the slight wobble, then think of Christmas coming, and there has been plenty going on lately to keep my mind occupied. The dark space that psoriasis occupies in my head is quite small at the moment.

3.     You recently joined PatientsLikeMe. What’s your impression thus far?

My first impression is good. I haven’t been that active on the site but then I haven’t done much on the blog either recently, or on my food blog that I also write, purely because I’ve been so busy. The people I have come into contact with through the site have all been positive and friendly, which is great. There is a time when the purely psoriasis groups/sites get a bit depressive, and I find myself backing away.

What’s Simon’s other big passion beyond psoriasis awareness?  Food, as this photo of him preparing Coq D’Argent shows. Does he alter what he eats based on his psoriasis?  Click to read the answer.

Psoriasis does seem to bring a lot of anger with it, and I quite understand that.  I just wish my fellow sufferers were a bit friendlier to each other now and then. And there are some who are brilliant; in fact, you have interviewed a few already. It is quite sobering to read what others go through, and this helps me get some perspective on my own condition.

4.     What advice would you give someone who’s newly diagnosed with psoriasis?

I would say make sure you see your doctor (GP here in the UK) and ask for a referral if you think your skin is bad enough. Find one of the many supports sites, like this one, which can measure your severity. But if the doctor can’t seem to help you, ask to be referred no matter how bad your skin is. Also persevere with the medication, as your skin is very unique to you and, just because one treatment works for one person, doesn’t mean it will work for you. Give them time to work and, if there’s no response, try something else.

The other thing is to talk.  It doesn’t have to be to your family or anyone close. The most important person is your doctor – don’t just show them your skin, tell them exactly how it makes you feel. If you can’t tell anyone, then write it down. There are many support networks out there with people who have the same condition and who will understand what you are going through. One last thing:  do not give up the fight.

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Want to hear how other psoriasis patients are dealing with dry air, cooler temps and other seasonal changes?  Check out our recent Patient Voice report on coping with psoriasis in the fall.  Also, find all of our blog coverage of psoriasis here.


Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter

Posted October 25th, 2012 by

Parkinson's Disease Humorist, Blogger and Author Bev Ribaudo ("YumaBev")PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy.  “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says.

In fact, her condition has given her a new purpose:  entertaining other “Parkies” with her deep reservoir of funny stories.  She began a blog called Parkinson’s Humor, and most recently, she’s collected the tales from her blog into a book, Parkinson’s Humor:  Funny Stories about My Life with Parkinson’s (available in paperback and Kindle editions).  Find out what she’s gotten out of sharing her sense of humor in our interview.

1. Tell us about the role that humor plays in your life – and why it’s so important.

Humor has always been a part of my life. Both of my parents had good senses of humor; they needed it with five accident-prone kids. I had a lot of tragedy in my life when I was young – my first husband died in a car crash when I was 23 and my mother died of lung cancer 15 months later. She used to joke about her bald head (from chemo) and pretty much kept on laughing right up until the day she died.

My wonderful husband and I used to do comedy shows tailored for seniors. We traveled the country in a RV and did shows from Florida to Washington. I used to come out dressed as Dolly Parton and then I did a standup routine as Daisy Jane (Minnie Pearl’s niece). It was a lot of fun and we both enjoyed making people laugh.

Bev Performing as Daisy Jane, the Niece of Minnie Pearl

When my mystery illness curtailed our travels, we performed closer to home. We stopped when I just couldn’t physically do it anymore. After diagnosis, I performed various skits at the RV Resort where we lived at the time. Whenever they needed some “entertainment” they’d just call me. I now live in a house and when I found a Parkinson’s chat room early one morning, and people who needed cheering up, I started sharing my funny stories with them and that’s how Parkinson’s Humor, the blog and book, began. I have seen what laughter can do for people, and I know that laughing helps me as well.

2.  You’ve tallied 59,000+ blog visitors to date. What have you gained from sharing and connecting with other PD patients online?

More than you can imagine. I am still not quite sure how it happened, how people from countries I have never even heard of found my blog, but the feedback I get inspires me to keep writing. My wonderful husband says, “Parkinson’s didn’t take anything away from you, it gave you a new life.” And he’s right. I have learned so many things from the people I connect with online and in turn, have shared right back.

I feel like I have a whole new family of brothers, sisters, aunts, uncles and grandparents as well as a dozen or so new parents, LOL. I have one close online friend who ends every reply with “Love, Mom.” She had a daughter who was born the same year as I was, but died as a toddler and she thinks that her daughter would have looked just like me.

3. What led you to turn your funny stories into a book?

The Cover of Bev's New Book

I made the blog stories into a book for just one reason: for people who are not computer literate. I had so many people say, “I printed out one of your stories for my Dad (Grandma, Aunt, Neighbor), who has Parkinson’s. He doesn’t do computers. Will it ever be a book?”

So, I spent most of this summer making it into book form. Sales have been pretty good considering I self-published and did all the marketing myself. I donated the first profit check of $250 to my local PD support group earlier this month. I hope to get a major sponsor soon, so I can send a book to every support group in the country for their library. I will not keep any money from the book for myself; it will all be donated to Parkinson’s. I hope to have huge sales for Christmas (fingers crossed).

4.  You had Deep Brain Stimulation (DBS) surgery on October 18th. What was that like, and how are you feeling?

The first part of the surgery went very well and I am feeling very good. Tomorrow is the second part and I am told that the recovery will be longer and more painful, but I hope to feel well enough to go to a Halloween Party Saturday night. I’ve got my costume all ready (complete with antennae, LOL). There is a blog post detailing the entire surgery on the www.ParkinsonsHumor.com website right now.