I’m setting all my “secrets” on the table and inviting everyone to lunch. 40 years starring in my own Lifetime movie trauma is emotionally exhausting!

I seek to find humor – as well as personal growth – in life’s most tormenting moments. After two brain surgeries featuring a drill, a neurostimulator and my superhero neurosurgeon, I’ve certainly gained a bit of perspective. You’re getting a front row seat on my roller coaster ride so buckle yourself in and prepare for a gasp…and a chuckle!

These are my details but they’re not solely my stories. At their essence, they’re also the narratives of your neighbors, colleagues, friends, and family, maybe even you – anyone who struggles with a medical or health issue that makes them feel different or poses obstacles to an ordinary day. We’re just looking to fit in and make sense of our lives.

Hopefully, you’ll gain some understanding and move one step closer to someone who stood a little farther away from you. In the end, the universality of the human experience unites us way more than our differences keep us apart.

Remember this:  Living with a movement disorder, it’s not about seeing the glass as half empty or half full, we’re just trying not to tip it over!

19 responses to “About

  1. I just subscribed to your blog. It’s well written, humorous and explains your life with dystonia in a very compelling manner. I’m going to quote your “Remember this” advice in an email that I send to the members of the dystonia support group that I lead and I’m going to suggest that our members subscribe to your blog also.

    • Fabulous. I really wanted to put my life out there in an honest but humorous way to reach people. I’m part of a dystonia support group in NYC and I’m getting more involved myself to help build attendance. That’s such important work you’re doing.

  2. stephanie fagin-jones

    Wow – what a wonderful blog – a truly terrific, uplifting resource – Tiffany’s posts say it all. You are providing a valuable, accessible, funny, supportive space for people to learn, vent, commiserate, reach out and connect. Bravo.

  3. Great blog that takes a serious subject and ‘talks’ about it with humour. I’ve always believed that the best way of conveying even the most serious of messages is by being light-hearted. I’ve written about my own experiences with DYT1 in my book THE GOD SQUAD and I also feature a section on it in my blog showing my medical records and x-rays of my head where experimental brain surgery was performed many years ago. I’ve also put a video of myself dealing with Dystonia on You Tube and it’s been viewed almost 60,000 times last time I checked. You can find it by typing Paddy Doyle – Dystonia into You Tube.
    Enough about me, this is your blog and I’m proud to have had it brought to my attention.
    Best wishes and take care.

    • We share many views, certainly on the virtues of humor. You are an inspiration to me and all of these blogs create an important stream of conversation. Having embarked on this journey, I have such respect for every person who blogs about their condition, baring their personal details to the world. They say a picture is worth a thousand words, your video is worth one million.

  4. Noticed a comment from yourself on a different site about how smiling can make a massive difference. Wandered across here and after reading one of the best ‘about’ pages I have discovered in a long time you have me hooked.

    Congratulations on raising awareness with such class and humour. Great blog.

    • Steven, Thank you for your lovely words. I must say, you pack an awesome “About” page yourself…and an even more incredible outlook on life. I’m absolutely thrilled you found your way to my site and hope this is the beginning of a lasting friendship. Let’s both keep smiling. -Pamela-

  5. thank u for helping me look at dystonia in a different way. since i found out i have it dystonia last year.

    • Nikesha, Thank you so much for writing. I’m not thrilled with the medical descriptions of our condition so I thought I’d give it my own spin with a bit of humor since laughter really is the best medicine. Frankly, so much of coping is the attitude we take. Also, Dystonia tends to get worse (temporarily) with stress, all the more reason to espouse a positive point of view. I’m happy to answer any questions you might have as I pack 40+ years of experience with this condition. Take care. -Pamela-

  6. Thank You so much for introducing me to your blog! I think this is one of the first times I haven’t felt completely alone with my Dystonia. I have lost many friends from this sadly, due to their lack of understanding, as well as family who just doesn’t get it and feels it would be best to not discuss it. Funny during the past several years when my dystonia has been at it’s worst it has been my 12yr old son that has been the most understanding and compassionate. He even has even found his own way of explaining it to his friends. Your stories give me a sense of hope and encouragement to be more open about my own ❤

    • Kristy, Truly, the pleasure is all mine, this blog has given me a tremendous sense of purpose. I traveled a long and winding road to share my story. No way I could have published this blog even 5 years ago. I just reached this point where I was tired of feeling ashamed and needed to get all my feelings out there, whatever that meant. Many of my initial posts poured out of me over a short period and I was confronted with what to do with them. This site – and meeting people like you who touch my life – have been a blessing. Remember, we all have hidden reserves of strength we might not even realize, we just need to find them. While there are people who can’t begin to understand the path we walk, there are those who are at least willing to try, which is all we really need. Everyone has their struggles, ours include Dystonia. I wish you the best and hope to see you here again. -Pam-

  7. Kristy,

    Having lived with dystonia for over 50 years I, like you, appreciate the value of having someone to talk to about this awful, wearing and tiring condition.

    Pamela has provided an invaluable service to many people and deserves recognition for that. She also deserves a lot of thanks. As I keep saying, Dystonia is ‘not a former part of the USSR’. People like Pamela bring it into the public domain and by so doing it helps people with the condition to understand that they are not alone.

    My best wishes to you Kristy.


    • Paddy,

      I must thank you for your lovely comment, which truly means the world to me. We combine for 90+ years of experience with Dystonia and well know the importance and challenge of spreading awareness. I’m thrilled to do my part and it’s been my good fortune to make true friends along the way – yourself included.


  8. Pamela,

    Just the kind of kind comment I need at this turbulent time when dystonic storms make vicious tornados pale into insignificance.

    We’ve shared experiences with others through your blog, let’s go for another 90 years just to spite the begrudgers!

    Keep going and well done on all you’ve achieved. I’ve no doubt there’s more to come, much more.

    Best wishes.


    • Paddy-

      I’ll go for another combined 90 if you’re game! Certainly, I’m a believer in the spirit and power of teamwork. I’m a newbie on the activist scene, particularly compared to a seasoned “pro” like you, and you’ve been an inspiration. I hope those storms subside soon and sunny skies await you.


  9. Jumping_Jenny_444

    I absolutely love your optimism and sense of humor despite having to deal with a chronic illness! 🙂 I’ve been taking this approach as well and it really does help out. I just started following your blog, so I will begin my journey of reading your posts–looking forward to it! 🙂

    • Jenny, You write an amazing blog yourself and I’m thrilled to have you along for the ride. Your site is yet another example of how we can put a positive spin on any situation, it’s all in the attitude! Keep up the great work, new friend. -Pamela-

  10. Hi, would you kindly tells your name? Tom and I knew many brown students together. Do we know each other?
    Sarah Gleason

    • Sarah,
      I’m so thrilled you found my blog and contacted me. My name is Pamela Sloate and I graduated from Brown in 1986. Professor Gleason was my professor for many memorable classes at Brown and helped me to craft my Russian History major. He had a tremendous impact on my Brown experience that continues to this day and I made it a point to visit him during reunions when Professor Gleason was still on campus (I’ll be in Providence this Spring for my 30th). I was so sorry to learn he was diagnosed with Parkinson’s. How ironic that we both have movement disorders. Please know that Professor Gleason’s article “Getting Around in Oz” served as inspiration for this website and I shared his amazing article on my blog in April 2013 in honor of Parkinson’s Awareness Month. Sending you both my warmest wishes. I’d love to stay in touch. -Pam-

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