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The Pete Frates Story?

PostPosted: August 19th, 2014, 12:59 pm
by pdodge715
Hi everyone,

As a warning, this post probably won't help anyone who is already having an anxious day.

As I'm sure all of you with social media accounts are aware, the ALS Ice Bucket Challenge has become something of a big deal over the last couple of weeks. I've tried to avoid it when I can because just seeing those three letters together will incite panic in me, even though I've been twitching for over 2 years now. Today I learned about the guy who's story inspired the Challenge - Pete Frates, a former college baseball star who is now 29 years old and was diagnosed with ALS in March 2012. He is severely debilitated now - very physically and verbally limited - and is expecting a child next month... a very, very tragic tale.

The thing that really gets me about Pete's story, is that he's about my age, was diagnosed around the time my first symptoms presented, and - most of all - he cites muscle twitching as his first symptom of the disease. Nothing I've found online has given a clear timeline of his progression, but he said that upper-body muscle twitching (which he dismissed as indicative of a nutrient deficiency) was his first indication that something was wrong. He says that from there, over an unspecified period of time, his athletic performance began to suffer, and that's when he sought treatment. An article on Bleacher Report says he was even working with a neuro in search of diagnosis at this stage, but they were unable to come up with anything until he, like all of us, googled his own symptoms in October 2011 and found ALS. He was diagnosed 5 months later and given 3-5 years to live.

If I had some timetable of his symptoms, this would probably bother me less than it does... but to hear about a guy my age whose symptoms began with muscle twitching and couldn't get a diagnosis out of his doctors - even a neuro - really, really shakes me up. I've been twitching constantly since June 2012 with a lot of weird stuff along the way, and I finally reached a point where I was comfortable saying "I know I don't have ALS." But hearing Pete's story has me feeling like a newbie all over again.

Does anyone know anymore about Pete's timeline? Anyone want to tell me I'm being ridiculous and don't have anything to worry about? I feel so embarassed that I have this much time under my belt without being confined to a wheelchair or worse, and yet here I am having a full-blown panic attack in my office because of another man's horrible story. I know I should instead be grateful for my health and abilities - but nevertheless, here I am.

**EDIT: I've calmed down. Took lunch, had a couple meetings, back to normal. Still twitchy, still a little off-put by our similarities; but very much aware that no matter what Pete's timeline was, there's no way he was twitching for 2 years before the disease really took off. Isn't it absurd that I can be so far into this and still have my feet knocked out from under me so easily? Here's to a calmer rest of the day...

Re: The Pete Frates Story?

PostPosted: August 19th, 2014, 9:07 pm
by Nytviolet
I've been thinking about this situation; doctors are in no hurry to diagnose *** (asterisks for your benefit) because there isn't anything to be done. How sad. So instead of immediately looking for ***, they try to rule out ANY AND ALL differential diagnoses. I HOPE AND PRAY that the ice bucket challenge -- to which I donated a small sum yesterday -- will provide sufficient funding to get a drug or treatment on the market QUICKLY. This way, doctors will endeavor to quickly dx the illness because we will have a viable treatment to slow or halt progression. I don't know how to bump this thread, but it would be a good way for our small group to raise money. There are about 5k on this board, so if everyone gave $25, that would be a $125,000 contribution! Also please remember: this is a relatively rare disease, especially in your age group, so you probably have boring old BFCS like the rest of us. Be well!

Re: The Pete Frates Story?

PostPosted: August 21st, 2014, 10:39 am
by Kev74
It's somewhat comforting to know I'm not the only one that has gotten anxiety over this. I know the whole "ice bucket" challenge is for a good cause, but it's also been terrible for my anxiety. Every time I go to Facebook I see some post about it and yes I have heard his story. Like you I also started started twitching in 2012 in a period of severe anxiety in my life. It was pretty rough for awhile but I'm confident that it's not some dreadful disease. Still... ever since then I've had terrible anxieties about my health, so if I'm not worried about ***, it's Alzheimer's or Parkinson's or whatever. Even if I don't have them there's always the "what if" in the future.

From what I've read about *** the main symptom is clinical weakness, not perceived weakness like we all seem to experience from time to time. I've read there are 20,000 to 30,000 with *** in the U.S. which is a pretty small number out of 313 Million. So statistic wise you have better chance of winning the lottery.

Re: The Pete Frates Story?

PostPosted: August 24th, 2014, 6:56 am
by Josmo

He first notice symptoms , in 2011 during intercity league which starts may , june !!!! Twitching upper body only quickly followed by wrist injury and weakness ! Diagnosis 03 2012 !!
Time frame less then a year .... 8 months

I know if we read months of testing for us sounds like forever , but i guess you don't need 2 years to get a answer , since june 2013 on his wedding day he walked with assistance !

Very sad story !

Re: The Pete Frates Story?

PostPosted: August 25th, 2014, 6:13 pm
by Tiber2011
I read his story and thought the same.

This is what I speculate:

1. His arms were already weak, and he didn't notice.

2. He obviously knew twtiching can be also caused by vitamin deficinecies. Thus, he wrote that he'd eat bananas and drink Gatorade. Perhaps this twitching was just caused by him being a dehydrated athlete? Perhaps he linked this benign twitching, induced by sports and lack of vitamins which he'd probabaly incur before, to A*** fasics which he learned about after diagnosis?

I pray for Pete.

Re: The Pete Frates Story?

PostPosted: August 26th, 2014, 3:50 pm
by Sadface
Please excuse me if this gets read the wrong way, I don't mean it to.....

What I have learned recently about some young people who have sadly got MND and their stories have been shared via the ice bucket challenge....
These people including Pete, are pretty positive strong people, who are living each day as it comes and making the most out of their *beep* situation. They are working to raise awareness and do so much to raise funds to help find a cure.
Then you read some of the posts here, and I include myself more than others. Our posts are filled with constant worrying, checking, obsessing etc. We are living in fear of something we haven't been told we have!!

I am trying to be positive myself which I know is hard when have a feeling of fear.
I have done my challenge, donated to the associations and peoples bucket lists, and thinking what else I can do to raise money for als/MND!

Re: The Pete Frates Story?

PostPosted: August 27th, 2014, 12:48 pm
by Sadface
Funny my positive view yesterday and staring at my to hie twitches today

Re: The Pete Frates Story?

PostPosted: September 28th, 2014, 9:52 am
by LKP1231
Wish I'd not seen this. Twitching, tired legs, no emg till thursday