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July 23rd, 2013
03:06 PM ET
Battling the deadly disease ALS
CNN's Suzanne Malveaux opens up about her mother's struggle with ALS
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I thank you for sharing your moms story on Als I was watching tv with my mother in the nursing home she has been in for over 3 months battling Als. she was only diagnosed this January and is declining now daily I have to admit I changed the channel because of the intro describing it as a deadly disease. I do not need to remind her of her fate. however I grabbed my iPad and set my VCR to watch it after work for my own comfort. I look forward to the next two parts. I struggle with the thought of losing my mother in the next short weeks. I am devastated and look for comfort anywhere I can get it. just to get through another day. thank you and god bless you and your family.
My mother was diagnosed with ALS in late 2003, just a few short months after my daughter was born. She fought bravely until 2008. For the last three years of her life, she lived in a care facility with tubes and wires attached everywhere. Eventually, the only way she could communicate was with blinks, and eventually, her body just shut down.
Suzanne, thank you so much for sharing your story. This is a disease that has sat on the sidelines for far too long. We HAVE to give our PALS a voice. We are their only hope.
My Mother, age 69, and my Cousin, Jeanne, age 53, both died of ALS. There are two different types of this disease: the type my Mom and Cousin had started in their throat and worked up to their mouth, where they could not swallow w/o a feeding tube for nuitiion, They only lived three years after they were diagnosed, They both died because their lungs stopped working. The other type of ALS starts in limbs, where people become ;paralyzed, but live a lot longer.
My father and his younger brother both had ALS. My uncle, dealt with this disease alone. Nobody in our family really knew what it was and since he was in Pittsburgh and we lived at the Jersey shore, never understood the severity of what he was going through. Hindsight can sting. My father was diagnosed within the year of my uncle's passing. My uncle had his legs affected the most. My father started in his throat, (I thought he had been drinking in the morning when the slurring started- even though I knew he wasn't) hands and finally legs. My father developed pneumonia about a year after diagnosis and in less than a week of being hospitalized, he passed on September 14, 2011. I have been trying to raise awareness for some time on a very small scale but one thing I noticed each time is that each person I have met (no matter the time since their loss) when they saw me and my display to raise awareness, cried. Some couldn't even talk about it. It is a very painful memory. It is like no other disease. To look in my father's eyes and know he wanted to say so much but could not or the times I had to help him up when he fell, along with so many other experiences- feeding tube, etc., I will never forget. He was a very strong man with so much life still in him. I was my father's caregiver and had to help my mother as well. I could go on and on but bottom line is that I am so grateful for this being aired. I am preparing for a walk in Ocean City, NJ in September for ALS and my team name is Shore to Find a Cure for ALS. Anybody in that area, please join us.
I ave been the primary caregiver for my adult son Corey, diagnosed in 2007. The biggest challenge is the cost of around the clock care. My son's courage in handling this condition inspires us daily. We Pray for a cure
We so appreciate the light being shed on this devastating disease. Our beautiful, brilliant daughter has recently been diagnosed. Your profiles of personal struggles with ALS have been heart wrenching and so well done. We are faced with a situation we have not heard addressed, however, and wonder if you have considered looking into the VA's handling of the alarming number of Vets who are receiving this diagnosis – currently reported to be twice that of the general population. Our daughter – a 5 year Navy Vet – has been waiting for services well beyond the anticipated time guidelines . Profiles of Veterans waiting to receive benefits as well as a dialog about the level of service being provided to those being treated through the VA might provide life situations not yet presented in your series.
Your story was heartbreaking, but also informative and important. I have watched you for years, and you are a rock solid reporter/journalist. Thank you for sharing the intimacy of your beautiful family. I wish your Mom, and all of you, well.
Thank you for putting a human face to this devastating disease. Your mother's indefatigable spirit is contagious and your family's faith, heart-warming.
Hello Ms. Suzanne Malveaux,
Your story (about your mum), on ALS was very touching. Your mum is a very brave woman. As a lay-person I sometimes feel that doctor's and scientists (sometimes) over look the ovious. In your piece you mentioned that the last part of the human body to be affected (by this horrible disease) was the eyes, and for some unknown reason, doctor's are not sure why that is. Again, my immediate question is: what elements of the eyes make this the last function to "hold out" to the disease. More importantly, what is the first organ to fail (when someone is battling ALS?), and I feel as though the scientist should look at that part of the body, and reduce what ever makes-up that organ or cell. Now, with the human eyes, would producing more eye drops (that the body naturally makes), and applying this compound to other parts of the body to stop the progression of this disease would maybe help some battling ALS? Maybe the scientists have already covered this area of thought, but you did not mention this in your report, so I don't know.
Finally, your mum is a lovely lady (I always say:you only have one mum), and you have a lovely family, and I look forward to your (follow-up) reporting on this horrible disease.
CNN's Suzanne Malveaux I think you have done 3 posts on this horrible disease, I'm I correct? This disease needs to be looked into. I can't
believe that this is even real. I wish all the people out there that are dealing with this the best.
I wouldn't want to live if i couldn't smile or kiss my wife.Suzanne keep posts like this coming, Info is knowledge.
I would like to invite everyone to support ALSFight.com. A website which will provide video instructions for patients and family members on how to live with this disease. It will also have number of tools which will assist them in daily life.