Sarah Coglianese, diagnosed in June 2012 at age 33.
I was diagnosed with ALS in 2012, when I was 33 years old. The year before, I suddenly started falling at random times. It was embarrassing, confusing, and a bit scary. I fell down stairs, up stairs, while walking down a street pushing my baby in a stroller. It took 6 months to get to the right person, a neurologist who could tell I had ALS just by hearing my story and seeing my twitching muscles. It took another 6 months to get the official diagnosis.
I was a runner. A walker. I went to regular yoga classes. I drove. Took my daughter to playgrounds, and danced with her in our kitchen. Now she is 4 years old and I’m in a wheelchair. She says she doesn’t remember a time when I could walk. Her earliest memory, in fact, seems to be the time that I stumbled, dropped a glass bottle of milk in our garage and started to cry. She was 2.
What would I do without my daughter? Without my husband? Without my sister and her family, who live nearby and are our main support? If living with ALS has taught me anything, it’s that life is good. There are lots of things I could be sad or angry about, and I do have my moments. But my prevailing feeling is one of gratitude, because I now truly appreciate the little things in life: being with family and friends, reading with my daughter, watching her swim, watching her grow. I want to be around for a long time to do just that.
Hi Sarah,
May God bless you and your family, in my thoughts.
Love,
Marcia
Hello Sara
The Minute I saw and read your story on CNN, I did hold my Daughter Vaishnavi as Myself, My Daughter Vaishnavi(7 Years) and had tears in my eyes as we went through the same phase exactly what you went through in your life, My Wife(Malathi) was 35 years(2010 June) when originally diagnosed with ALS as my Daughter was like 18 Months old and I took care of my wife and my daughter from there onwards and my Mom went through similar feelings / spent good time with family friends and always spent 24/ 7 with me and her little one Vaishu.
I definitely understand the life which you, your husband, daughter and your entire family is going through but Keep Faith in you and Trust God, nothing is going to happen to your daughter she will have a wonderful life in the future like my Daugher as I believe both my wife and yours was Sporadic and Not Genetic. I did meet Dr Knight while my wife is used to be admitted into ICU for replacement of her Peg Tube / Respiratory Problem as Dr Knight Dad was an ALS Patient but Dr Kinght was active and living a normal life.
My Wife Mala passed away on June 25th 2015. I wish you, your husband,daughter and your entire family are going to have good times and have lot of fun and have all the blessings from God.
I really wanted to write back and share mine/mywife and my daughter story saying that you are not the only one who went through like this but there is at least another family who went through the similar life pattern which will give little bit of hope to extend and continue your life as long as you can with your little one and your husband to be happy as you all move forward.
I will definitely tell your story to my daughter so that she will understand that it was not only her Mom who went through the ALS but another Mom similar to her Mom also went through the same illness.
God Bless you, your little one and your husband to give courage / strength and all the blessings on this planet to be given to you all.
Take Care,
Sai Kastury
Hi sarah,
I`m writing you from Colombia. When I saw your life story in Youtube the tears on my eyes appear. I admire you strength because I know this disease it is not easy neither for the family and the patient itself. My father was diagnosed ALS in November of 2015. The disease has attacked very quickly. Nowadays, he is paralized, with a tracheostomy and a gastrostomy which is the tube where the aliment is given to him.
There are days when is hard to see my daddy like that since he was a very active man, but I think that this type of things occurs for a purpose. We need to value every minute we pass with our loved ones, and no matter what we need to support each other. To finish, I agree with the last sentence you said on the video “ALS is not an uncurable disease is an underfounded disease.” I have all my hopes that soon or later the cure is going to appear and this disease is going to stop, because I don`t wish this suffering to any one.
You have a beautiful family and always remember to have faith and never give up.
Greetings from Colombia
I hope this is helpful rather than annoying. I follow your blog and think of you often. Sending every wish for your health:
http://www.timesofisrael.com/israeli-scientists-announce-new-treatment-for-als