ALS/Lou Gehrig's Disease...and with those words hanging in the examining room our family's priorities changed in an instant. When my ALS diagnosis was confirmed it felt like someone flipped over the hourglass. Grief, anger, hopelessness and fear were just some of the emotions that washed over us that day. Months and months of testing were over however that was not the diagnosis we wanted to hear. No one wants to hear that they have an incurable illness. From that moment, things have only looked up. We are so grateful to have such wonderful family and amazing friends. The agony of worrying about whether I had ALS was way worse than knowing I have it.
My name is Keith Jones and I was diagnosed with ALS in the fall of 2014 at age 46. The journey toward a diagnosis was long and there were a few wrong turns along the way but in the end, all that was left on the table was ALS. My ALS symptoms began slowly in the summer of 2011. They were and still include muscle cramps, weakness and twitches (fasciculations) in my upper and/or lower parts of my body (arm and/or calf and hamstring), clumsiness (such as dropping things), difficulty breathing (I sleep in a recliner with a ventilator every night), speaking (think inflection or tone of your voice), weight loss and the loss of muscle mass.
Almost everyone knows someone who has (or had) ALS. Because of this experience they may consider themselves an expert on the subject. They mean well, I'm sure, but lease try to remember that each case is unique. Just because someone's coworker's cousin's neighbor lived only a few months after his or her diagnosis doesn't mean the same will happen to me.
I have been married to the love of my life, Heather, for 15 years. We have a beautiful, caring, happy, loving and enthusiastic 8 year old daughter, Madisen. We also have an adorably sweet and energetic 2 year old dog, Addy Mae. Madisen is aware that Daddy is on permanent disability and has trouble breathing but at this point that is all we are prepared to share with her. As things progress, we will share with her what is happening and introduce her to any new equipment that may be coming into our home so that she is not afraid. When I first started using the ventilator, she was scared and cried but now she is so used to it that she comes in and wakes me up in the morning by helping me off with my mask and turning off the machine. She is our pride and joy and she inspires me everyday.
My daily activities are still about the same except I am not able to work full time as I frequently need to rest and have trouble sleeping due to the muscle cramps, etc. Between here and there, as I am able, I take my daughter twice week to her riding lessons and I volunteer at her school 2-3 days per week. It always makes my day to see those endearing faces of the children in my daughters class that have no idea that I have ALS and I think even if they did, it would not matter. As of late; zippers, buttons, putting on gloves, buckles, tying shoes, putting Madisen's hair in a pony tail, playing Xbox, etc. have been a tougher and I struggle with these everyday activities. These are simple things that we hardly notice and take for granted. My family helps and I'm so grateful for everything that they do. In a way, I'm very lucky as if it's possible, my family has grown closer and now we do not take anything for granted. We cherish every day that we have together and are blessed to have this time to share and love and grow together on this journey, whatever it may be.
To my Family, Friends, Colleagues and Acquaintances,
This is not a goodbye however, I do want to say thanks for the memories and the wonderful moments we have been able to share together over the years.
Heather and I will continue to post updates here as frequently as we can. If you don't see anything for a while, don't worry, we may just be busy out making memories!
Please feel free to post here as you like, we welcome all comments and prayers and little ray of sunshine you care to share.
Thank you all for your blessings and prayers.
We love you!