Jodi Oliver, diagnosed in May 2013 at age 44.
Died April 2, 2015.
In Fall of 2012, I was in the best shape of my life. I enjoyed the spin classes at the gym and would run local 5Ks with friends and family. I worked as a registered ER nurse. Then things started to change. Walking back from the ICU, I wasn’t able to keep pace with the team. I found weakness in my left hand. I was struggling to uncap my syringes.
When I was first told that I had ALS, my world started to crumble. I worried about my twin girls, who were 9, my son Blake, 13, who had been severely disabled since birth and required 24-hour nursing care. My oldest son, who was 15. How would my husband manage all of the responsibilities? I simply felt like the unluckiest person in the world.
At birth, we were told that Blake would live a year. He passed away in July of 2013. For me, it was a blessing; he no longer suffered. It would also be one less responsibility my husband would have to bear on his own.
My speech is now slurred, I walk like a toddler, holding on to furniture and walls to steady myself. My muscles are fading and wobbly like jello. But I’ve come to discover in all of this I’m not the most unlucky person. I have friends and family who have become golden to me. Bonds have become stronger. I try to be present in the time I have left.
Thank you Jodi for sharing your story. You know treatment is under way, we are all pushing for it , hang on there sweety.
OMG! This is one of the most cruel diseases there is out there. My daughter Misty has SMA and is 37 now. She has accomplished so very much in her young life so much more than even me and all because of who she is and has never felt sorry for herself and has always tried to adapt as best she can to different situations. She looks at it as “well if I cannot not do this like everyone else I will figure out another way to do it” now that does not work foe EVERYTHING of course, but this is her mindset, this is who she is. She has however lived with a lot of suffering and as in the story above there is nothing worse than having to watch your child who loves living so very much have to go through everything they do. I have learned so much about this disease, and ALS . How very very cruel they are and what it does to a parent and their loved ones to slowly watch them become weaker and weaker over time. Misty is really struggling right now to continue to be able to feed herself, she cannot put her makeup on or paint her fingernails anymore which she always so enjoyed doing. It is a lot of the smallest things we all take for granted. She is my reason for living and for now my angel here on earth. My heart breaks over the story above. Not only did she have ALS but a severally disabled child herself. She had to leave her children and husband and also be sick and lose her child before she passed. God bless her and her sons soul and the only thing I can say is her and her son are reunited at last.
Thanks so much for your story. You and your family are in my thoughts and prayers. My husband,Dan, had Als. He was such an inspiration to many. He may of had Als but Als didn’t have him. He had such great courage and dignity through the whole process. He was a remarkable person. It is so true the bond that you have with family and friends through this process is unwavering. We were blessed to have them with us. Someday, there will be a cure we only can hope. At least there has been a lot of awareness over the last couple of years.
God Bless all the PALS and their caregivers…
Marianne, you wouldn’t happen to be from the NY/NJ area, would you?? I am currently in the process of being diagnosed, and I see that your husband had ALS. I also see that we share the same last name..
Just curious. Thank you and Happy Thanksgiving!