Monday, May 20, 2013

Beth's story...

Beth and me May 2013
ALS is known for what it takes from each person it touches, however, in this case, I gained something because of ALS … a friend.  I met Beth at the first ALS Clinic I attended.  We are both in our 40s, both worked in the public school system, and both have been diagnosed with bulbar onset ALS.  Although talking is hard for us, we are able to stay in touch by email.  For me, it is nice to know someone else who understands many of the frustrations of this disease but who is also unwilling to allow those frustrations to become the focus of everyday life.  Together, we can be honest about how we feel, both physically and emotionally, and the things we fear, not just for ourselves but for our families, and because we are both living it personally, the level of understanding we share is just that much stronger.

Having Beth as a friend is very special for me.  We share many similarities and yet have a great many differences in our lives.  The same can be said of our experience with ALS because this disease takes each person on their own journey and it progresses differently in everyone.    

I am very happy to know Beth and to have her as my friend.  I am inspired by her perseverance, strength and the grace in which she shoulders her illness while raising her granddaughter.  Yes, Beth is living with ALS but the important thing is that she is living each day.

Thank you for sharing your story, my friend!

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Hello, my name is Beth and I want to tell you my story of how ALS has impacted my life.

In the fall of 2010, I began noticing symptoms that just did not seem normal.  I was having great difficulty lifting my head when laying flat or in a reclined position and I was having trouble  swallowing certain foods.  When all these symptoms became noticeable to me, I tried to ignore them because I was extremely busy.  Teaching Pre-K in a public school system was my job and I loved my job.  I was always trying to find new ideas to use in the classroom or a better way of doing things so my students would have the opportunity to learn.

My husband and I were raising our one year old granddaughter and, as all children at that age are, she was full of life.  My father had Alzheimer's and he passed away in October 2010.  I just did not have time to deal with those crazy symptoms I was having.  By the end of the school year, I decided I better let my doctor check out this swallowing issue. 

So, in the summer of 2011 my journey with ALS (Amyotrophic Lateral Sclerosis) or as some know it, Lou Gehrig's Disease, began.  Of course, at the time I had no idea what laid ahead.  I went from seeing my gastroenterologist to my first neurologist in September 2011.  The neurologist was very concerned about my symptoms so he ran every test possible and was just not 100% sure of a diagnosis.  He sent me to the Mayo Clinic in Florida.
 
God had his hands on me the entire time.  I just had a peace about my life and I knew that God was in control, which made it easier for me to prepare myself for my future.  I was so blessed to end up under the care of a wonderful neurologist who just happened to be the head of the ALS Clinic.  The tests began all over again, which was fine with me because I wanted an answer.  My symptoms had progressed slightly.  My voice was becoming a bit weaker and it had the sound of someone with a severe sore throat, somewhat hoarse.  I was still eating but I had to watch what I ate to be able to get it down my throat.  I was also a little tired and was just not able to do the things that I use to do, like running around with my four and five year old students, lifting things that had a little weight, and I was having trouble singing songs and reading stories to my students and my granddaughter.  It was like I could not get enough air into my lungs.

Finally, in March 2012 my neurologist at Mayo gave me the diagnosis.  I really think I new deep down inside that I had ALS.  I had been doing my own research and it just all seemed to fit together.  Never would I be able to get through each and every day if I did not have a personal relationship with Jesus.  I live with peace although each day is somewhat of a challenge.  I no longer eat or drink the way I use to.  Everything goes in via feeding tube...including medications.  I am still able to use my limbs.  My arms, at times,  are a little weaker than normal but nothing debilitating.  My diaphragm is slowly becoming weaker so my breathing is often a little labored.  I had to retire after 19 years of teaching due to the complications of ALS.

Although there is no cure at this very moment, I am not discouraged because there are people in all walks of life trying their best to fight for a cure.  If you read this story, or any story about ALS, and want to learn more about Lou Gehrig's Disease, you can.  Just go to the national ALS Association website www.alsa.org and you will find ways to help out and educate yourself on this disease.

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2 comments:

  1. Sam, thank you for introducing Beth. And thank you, Beth, for sharing your story. Your courage and grace is evident in your words. I am glad you and Sam support each other. You both inspire me.

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