May 2013 Friends of Susy Miller Start

 

  

Hello everybody! 2014 was a monumental year for ALS awareness. Thank you to so many for participating in the Ice Bucket Challenge last August. An unprecidented $230 million was donated world wide, $115 million from the US alone. I'm sure many of you want to know how the money was allocated. Half of it went to direct funding of ALS research for a cure. The other half was used to open more ALS centers in states that did not have one now those with ALS in those states will benefit from the same multi-disciplinary care and support that I receive from my ALS center at Wake Forest Baptist Hospital. But the best thing to happen through all of it was being the fifth highest trending topic of 2014. We had over 93 million searches to the ALS association website! 93 million! So many now know what this disease is. The ALS assoication had never gotten a fraction of that interest before. To those of us with ALS it is so gratifiying to know that so many people are more aware of how this disease affects patients, caregivers, family and friends.

It has been 5 1/2 years since my own diagnosises. I had to retire from Stampin! UP since I was no longer able to function as a demonstrator anymore. It was a heart breaking decission, because I had seventeen wonderful years working for a great company. And I miss my customers and demonstrator friends from all across the country. Most of the year was fall-free. I loved sitting outside on my ramp enjoying my beautiful woods and all the birds. Donnie and I invited four of our closest friends to vaction with us in Flordia in Septmeber and we had a blast!. But then in OctoberI had to have my  gallbladder remove and on December 30 I fell out of my shower, breaking a vertibrae in my back and spraning my neck. Two months in a back and neck brace really set me back  and I lost half of my breathing function. And to make matters worse, I spent 8 days in the hospital in March with a bleeding ulcer. Not a very auspicious start to 2015.

I don't know whatt I would do without my most wonderful angel, Donnie. He literally has to set up his whole day reolving around me and my care, be it crushing pills, tube feedings, pureeing food, potty breaks and changing diapers. My ALS is nothig compared to all that he has to do for me. God has really blessed me with my precious Donnie. My youngest, Gus is at  home as well and had been lending the muscle when needed. Max was in Philadelphia for the last year, but he decided he wanted to be closer to home so he is moving back next week.  I can't wait to have both my sons with me again.

This year, the Winston-Salem Walk to Defeat ALS is on Saturday, May 2. Because of this walk, EVERY DOLLAR that is donated stays in North Carolina for the Jim "Catfish' Hunter Chapter, which serves all ALS patients in the state and is one of the most active chapters in the entire USA. I can tell you first-hand about how wonderful this chapter is with ALS support groups, personal grants, ALS advocacy, critical research and funding for the ALS Clinics around the state that provide people like me with medical care, advice and support.  Knowing that my local ALS Clinic's sole purpose is to help patients like me through this disease's horrific progression is what makes me face ALS head-on with determination, strength, hope and grace. The chapter also provides critical support for all the caregivers in NC who have the toughest job of aiding and caring for us.

I am again asking for your help this year, to raise money for our ALS Chapter.  This year's 2015 Walk to Defeat ALS will be on Saturday, May 2nd, starting at 8:30 am (registration and check-in) at the football stadium of Wake Forest University here in Winston-Salem.  It would mean so much to me if you would COME to Winston-Salem and walk in the ALS Walk WITH me.  It is a leisurely 2-mile walk around BB&T field, and you would see and experience, first-hand, this inspiring and uplifting event in honor of ALS patients both here and gone, their caregivers and families and friends, all rolling and walking together. 

If you cannot come to Winston-Salem to walk, please consider sponsoring me with a donation.  I have set a personal goal of raising $5,000.  With your help, I'll make and hopefully exceed my goal! To sponsor me as I walk, please click on http://webnc.alsa.org/site/TR/Walks/NorthCarolina?px=2495740&pg=personal&fr_id=10768. 

 
 
the DONATE TO SUSY! button to the right.  I know that times may be tight for some of you, but the direct financial impact of your donation is of immeasurable assistance to all who are affected by this cruel disease.  And remember your donations are tax-deductible. Click on this link to make donation: http://webnc.alsa.org/site/TR/Walks/NorthCarolina?px=2495740&pg=personal&fr_id=10768. Your donations are tax deductible.

Thank you in advance, for being an integral part of this wonderful and uplifting event, but most of all, for all of your love and support.

Love,

Susy

P.S. Thank you and love to Carrie Huffman for typing this for me!