Motherhood alone has its fair share of struggles, but imagine being a wife and mother to 3 young children and living with a fatal neuromuscular disease that slowly robs your body of its ability to walk, speak, swallow and breathe.
With an average life expectancy of 2 to 5 years, your priorities dramatically change.
Meet Kari Robben, a Cincinnati mom living with ALS. The following is her story in her own words.
I was diagnosed with ALS on January 26, 2015, when I was 27 years old and my children were 4, 2 and 7 months. I began experiencing symptoms while I was pregnant with my son Emmett. I started having weakness in my hands which was attributed to pregnancy induced carpal tunnel. My hands were so weak I could no longer turn the key in the doorknob. I was having muscle cramping all over my body and had started having muscle twitches in my arms. I also noticed feeling like I would fall down the steps because my muscles would spring me forward.
I was reassured by everyone that once I had the baby, everything would go back to normal.
When I delivered Emmett, I felt different then I had with my other births. I felt weak and didn’t feel like I could push the way I was supposed to. After Emmett was born, I waited for the symptoms to subside but they didn’t. New symptoms began appearing like increased right-hand weakness and not being able to straighten my pointer finger without really focusing on it. We would try to make light of the looming seriousness, calling it my witch finger. I started overstepping myself and running into door frames.
One night, I was lying in bed with my husband after nursing my then two-month-old when I decided to Google my symptoms. Hand weakness, muscle spasm, muscle wasting, muscle cramps. The first thing that comes up on the list is ALS. I refreshed the page hoping that somewhere inside the Internet the wires were crossed. But the same information came up again; two to five years of life expectancy and losing all function of your body. I woke my husband up crying, saying that we needed to make an appointment with a doctor. Around this same time, the ice bucket challenge had taken off and everywhere I looked I saw people talking about ALS, or Lou Gehrig’s disease. After reading an article about Pete Frates, I knew that I had ALS.
My primary care physician basically laughed in my face and said I didn’t fit the criteria to have ALS. I wasn’t a man, I wasn’t old, and I wasn’t a veteran. After seeing her, I saw an orthopedic surgeon, an occupational therapist, a neurologist for two months, a physical therapist, and no one could find an answer. In January of 2015, we made the long drive to the Mayo Clinic in Jacksonville, Florida. I underwent a week of testing to finally receive a diagnosis of ALS. Six months after my concerns started, 4 MRIs, 2 EMGs, more vials of blood then I could count, a spinal tap, and 7 doctors later, I was able to finally have an answer. My husband and I struggled to move forward after the diagnosis, but we made a promise that we will fight and live for “today”.
Things are hard but I always try to stay positive and be thankful that I am able to still take care of my children and live my life. I can’t do buttons. I can’t do zippers. I have a hard time writing. I can’t open lids or caps. My muscles are stiff and my twitches are increasing. My arms and shoulders are weak which makes carrying things difficult. I’ve had to resign from teaching because I no longer could teach my students the way they need to be taught. There are days when I have doubts and fears and feelings of jealousy, but the things I can do outshine everything I can’t do. My legs are strong, my breathing is strong, and my determination is even stronger. I have three beautiful, amazing blessings from God that are my strength. Someday soon they will know that something is wrong with my body, but they will also know it will not control me. I live my life for them and will fight until the end. Every day is a blessing and I see God’s love more and more now.
I live for today and pray for tomorrow.
Kari and her family reside in Harrison, Ohio. Her husband is a firefighter with Liberty Township and the City of Harrison. You can help Kari and her family by donating to or participating in the Cincinnati Walk to Defeat ALS
I admire your courage and attitude Mama. Good wishes to all of you. <3
Kari my are with you. My 52 year old daughter suffered with ALS and your story sounds so much like yours. She only had one 10 year old son when she was diagnosed. She was a nurse at Vanderbilt Hospital and she diagnosed herself just like you did. She lived two & a half years but never gave up. Kept her wonderful personality always. She was my only daughter and I will not ever get over losing her but I know God is taking care of her. Keep your chin up and live each day with your family. Im sure some day they will find a cure for this terrible disease. God Bless you and your family.
Hello Kari Robben. Just read your story. It’s good, but sad. But you have definitely the right attitude. As a long-time patient of MND/ALS/Lou Gehrig’s disease. I can associate with your predicament. My hands and arms are useless. Writing to you with voice recognition technology. My disease started like yours – in my hands. But that was 40 years ago! Myself and my wife RIP. Had six young children then – from 14 years to – two years old. I was the breadwinner. The first years with this disease was hell. Then I got the initiative to value what I’ve got – not what I have lost. I could write this story forever about my survival. You can get in touch with me if you want to. But I have written a book about my life that started in 1933. The book can be got from Amazon. “Against the Odds living with MND. By Andy McGovern”. I wish you well. Nobody can do anything to stop this disease. The secret lies within you! “Search for the power within you. A power greater than yourself”. Best wishes – Andy ~
I read your story keep fighting this horrible disease don’t ever give up your attitude and positive thinking I can tell you first hand it does help ….being a mom my son has ALS. He was diagnosed in 2011 just like you a slow progression. My son now is 46 …he still coaches kids ( flag football, basketball and where he works he started a girls travel basketball team) he will tell you… you can take all the medicine for ALS ( Rilutek) which he’s still on …but the kids are his medicine and that’s what keeps him going. it started in his right arm he’s lost use of his arms and legs now and has a feeding tube and just opt to have a trac…he still talks he still has face movement and can move his head a little ….but his spirituality is fantastic.you can actually read about my son go to 1luv4jeff.com …I hope they find a cure for this horrible disease. I’m just giving you some insight on some things when and if you have a feeding tube fight through your insurance to get the food called liquid hope do not use the other stuff this is all natural organic and best for your body….you can read about it …my sons Drs at the University Of Miami told us about it….and there’s a computer out there that you can use with your eyes it call tobii..go to Team Gleason my son got it through them it’s very costly but got it through them free.i think his Drs filled out all the info for it. I wish you and your family well…and there is a new drug will defiantly be out in august was approved by FDA.
Merle Fogel
Hi Kari, My mom was also diagnosed with ALS at Mayo Clinic in Jacksonville, Fl., she sees Dr. Oskarson at Mayo. She is much older than you are, however, your symptoms are the same as hers. She really struggles to walk now, but she has the same incredible sense of faith and positive thinking that you do. She says every day she’s grateful to hear her children’s voices, albeit long distance in two of our cases. She is on a trial therapy at Mayo right now, it’s an infusion daily called ratacava. Right now she can’t notice a change but we all keep praying. I just added you to my prayer list Kari, positive outlook and faith in God perform miracles. Gods Blessings, Lisa Ramsey
My first ALS symptom appeared in 2011. 4 years ago I learnt about ALS/MND successful chinese medicine from Rich Herbs Foundation (ww w. richherbsfoundation.c om), the treatment made a tremendous difference for me. Few weeks into the treatment I had improved muscle strength and coordination, improved speech, improved walking balance, increased appetite, improved eyesight and no mood swings. 4 years since the treatment, i still feel stronger than ever with no symptoms at all, only occasional tingling on my right foot at night. I really feel cured from the disease!
My Wife was diagnosed with ALS (Lou Gehrig’s Disease) when she was 72 years old 4 years ago. The Rilutek (riluzole) did very little to help her. The medical team did even less. Her decline was rapid and devastating. Her arms weakened first, then her hands and legs. Last year, a family friend told us about Organic Herbal clinic and their successful ALS TREATMENT, we visited their website www. organicherbalclinic. com and ordered their ALS Formula, i am happy to report the treatment effectively treated and reversed her Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, she is able to walk and eat well, sleep well and exercise regularly., she is pretty active now and her attitude is extremely positive.
My first symptoms of ALS occurred in 2009, but was diagnosed in 2011. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then i decided to try alternative measures and began on ALS Formula treatment from Herbal Health Point, It has made a tremendous difference for me (Visit ww w. herbalhealthpoint.c om). I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.
There have been 2 new drugs that recently came out in the last 2 years. Tigkutik has been helping my brother with swallowing issues.