My Personal Story… ALS Awareness Month

As I pondered how best to do my part in spreading awareness to ALS this month, I wavered between writing something poignant or making a video and free styling. It occurred to me that telling my own personal story might make a bit more of an impact.

I have not shared what you will see me talk about in this video with many people. I talk from my heart, unfiltered, unrehearsed and parts are raw and may be hard to hear. Please excuse any use of mature language.

What you see here is me. A person living with ALS.

I hope this brings more awareness. 

Someday, every month of the year will be ALS Awareness Month!

 

 

This song kind of says it all for me…

Sunsets over the beaches from now on
Each day looking for new ways to go on

Slow burn watching the world turn from my arms
New way of measuring each day till it’s gone

Sunrise building a reprise in my heart
Regret tight around my chest plays its part
‘Till it’s gone

But to shower you with pity would do you no good at all
No good at all

Now watching the sunset, sunset, sunset, sunset
Over the beaches, beaches, beaches, beaches

2 thoughts on “My Personal Story… ALS Awareness Month

  1. Lynne Palumbo

    Dear Rich,
    Thank you for your transparency and honesty in this video. It took courage for you to be such an open book and share your feelings so openly. I know your honesty will help others in a big way. I’m sending you lots of prayers and good wishes for a long life with ALS. I’m a fellow graduate of SHS 1984

    Liked by 2 people

  2. Dear Rich,
    My husbands story is much like yours. His name is Jim Peckenpaugh and was officially diagnosed with ALS March 10, 2015.
    He had Bilateral knee replacements in March 2014 and his left foot wasn’t healing as quickly as his right, or so we thought. He began to trip and fall and in October he told me it was as if his mind wasn’t communicating with his foot. I knew at this point it had nothing to do with his knees. He went to his Dr. who confirmed this and referred him to a neurologist and said he was concerned it could be Parkinson’s disease. He got in to see the neurologist November 2014 and was told he thought it looked like ALS but wanted us to see the neurologist who specialized in ALS, Dr. Amy Guetierez, to confirm since he wasn’t as familiar with the disease. We couldn’t get in to see Dr. Amy until March 10, 2015, even with his close connection to her. I hate to think about how long it would have taken without his connection. I also can’t even count how many falls, some of which were severe, before the official diagnosis.
    Jims symptoms began in his left foot, slowly progressed to his right foot and left arm, about the same time, and now he has less use of his right hand than you. His FVC has now dropped to 48 and his speech is slightly affected now.
    He fell in September 2015 and broke his neck, took an accidental overdose at a hotel for his 70th birthday and had a Pulmonary Embolism in October 2016 where they lost him on the table and had to resuscitate him. All of these event she can be attributed to this awful terminal disease.
    I feel very lucky to still have him. I am his sole caregiver. We have a huge and fabulous ALS community in New Orleans and I feel so blessed to have Steve Gleason and the Gleason organization here. My husband is currently trying to become more active with Team Gleason in raising money to help those currently living with ALS live a better, more productive and comfortable life.
    Jim was a big golfer for the past 30 years and took the initiative to plan a golf tournament to raise money for Team Gleason. In October 2017 we held our first annual Boo Classic Golf tournament and Halloween Costume party. It was a huge success raising over $58,000 and clearing enough to donate $38,000 to Team Gleason. It was a beautiful and amazing night. I would love to share a few photos from the event as well as a couple of you tube videos one of our friends put together from the event. You can search Boo Classic on you tube to find them. There is a slideshow as well as a ALS awareness video. I think you will like them and hope they also give you a good laugh. He is the Witch and I was Marilyn Monroe. Steve Gleason is also in the videos.
    I want to personally thank you for bringing awareness to this devastating disease we live with everyday. I truly believe the cure is coming and I feel it will either be the new trial Nurown or stem from this drug. God bless you and your family and I am sending much love and prayers you way.
    Lee Ann Faulk-Peckenpaugh.

    Liked by 1 person

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