Why Lori made me cry (It’s worthwhile reading. I promise.)

I lost my mom last year. No, I wasn’t being my usual careless self. I mean I really lost her. She died – after living with a hideous illness for three years.

See, my mom had Motor Neurone Disease (or MND or Lou Gherig’s Diesease, or ALS – Amyotrophic Lateral Sclerosis, if you wanna get technical). It’s a godawful illness, slowly draining away every physical ability one has, while leaving the mind fully aware of the body’s degeneration. Wanna know what made it even worse? Ten years before my mom was diagnosed, she spent spent three years nursing my dad through the same hideous illness. (Yeah, a real sick joke of nature.) So she knew what was in store for her. She knew what she was facing every step inch of the way. And we did too.

Unfortunately, we are not the only one’s who’ve had to deal with this devastating reality. Hundreds and thousands of people live with, and die from, the disease every year. Lori is living with it as we speak: her sister-in-law has ALS.

In March, Lori posted to Limecello’s blog, speaking about her S-I-L and the diagnosis and the disease, and when I read her post, I cried. I understood exactly what she and her family were going through. So when I saw her next post at Lime’s Blog, I knew I had to help her spread the word.  Lori is making a difference. Lori is trying to prevent ALS, and I hope you’ll help her.

Please join me in welcoming her to International Heat, and please, support her cause. It is a worthy one indeed.


Walk to Defeat ALS… because you can

Thanks so much to Jess for hosting me here. One of the things I love so much about the romance community is the hugeness of our hearts. This community is filled with kind, compassionate and caring people.

I walked in the ACS Relay for Life for several years to support cancer research and you all have supported me through those many years. Last year, I changed my focus to ALS, Lou Gehrig’s disease. I’m hoping that you will find it in your hearts to help me out just a little (or a whole freaking lot!). You can donate to my October 14 Walk to Defeat ALS here: http://webgw.alsa.org/goto/loris

A lot of people don’t know much, if anything about ALS. It’s a quiet disease, a quiet killer. Back in March, I posted at Limecello’s blog about my sister in law. She was diagnosed 2 years ago with ALS, Lou Gehrig’s disease. It’s a neuromuscular disorder that basically paralyzes your body and eventually is fatal. You slowly lose your ability to walk, talk, swallow, breathe. Yet you remain completely aware of everything going on around you and can still feel pain. It is among the cruelest of diseases. Every 90 minutes a person in the US is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. Very few people live longer than 7 years after diagnosis. The most famous person with ALS today is the brilliant Stephen Hawking.

Sue’s diagnosis took 18 months, which is sadly not unusual. Since I last posted here about ALS, Sue has lost her voice, because the vocal cords don’t work anymore. She has a tube in her stomach for medications and feeding She can’t take care of her most basic needs alone. The saving grace for my brother and sister-in-law has been our local chapter of the ALS Association. The ALS Association is there to help families in their local communities with the necessary adjustments – providing affordable equipment such as wheelchairs for patients, contractors to retrofit houses, and social services to give patients and their families the support they need. Our local chapter helped my brother find a handicap-equipped van at an affordable price. They recommended a contractor to them who works with the ALS Association to give a special break in price to ALS patients for retrofitting their home. They support a ton of research as well.

When I posted in March at Limecello’s, I shared the story of New Orleans Saints player Steve Gleason, who is battling ALS. Since that time, new research has shown that in addition to other brain related injuries, NFL players are 4 times more likely to die from ALS than the rest of the population. Additionally, the Pentagon is funding research because our troops seem to also have a very high incidence.

The average life expectancy of an ALS patient ranges from 2 to 5 years from the time of diagnosis. We are now at the 2 -year mark, which means that Sue has had this horrific disease for at least 3 ½ years. I know that there is quickly going to come a day when we no longer have Sue with us. She’s been my sister for the last 30 years. I hate that this is happening to her and my brother and my nieces. There is no cure for ALS. There is not even any sort of treatment yet. While I hate to say it, it’s not likely that Sue will benefit directly from the ongoing research. Where she does benefit immediately is with the support offered to them by the ALS Association and the community of families that reside within it. The ALS community is a tightly-kit one, and it breaks my heart every time my brother tells me that one of their friends has lost their battle.

My greatest hope is that Sue will win her battle, and be here to watch both of her daughters graduate from college, dance at their weddings, and live to see her grandchildren. I pray we find a cure for the millions of people with ALS, but most especially… and selfishly (I admit)… I pray for a cure for Sue, my brother, and my nieces. I am so very proud of Sue and my big brother – they personify grace and dignity and unselfish unconditional love.

Because every donation goes almost exclusively to the local chapters, every gift you make will go directly toward helping my brother and his family. Here is, in part, how donations help:
• $25 pays for a walking cane that will transform the hope for safety into peace of mind.
• $60 helps webcast an “Ask the Experts” research summit online for those who are unable to attend in person.
• $100 enables repairs and maintenance of an augmentative communication device (AAC) from the ALS loan closet.
• $250 funds one of sixteen monthly support groups that serve people with ALS and their families in my community.
• $600 supports one day of a multi-disciplinary satellite clinic which serves people with ALS who aren’t able to travel long distances.

Money is so tight for so many of us. I’d really appreciate anything that you could donate to help fight against ALS. Even $5 or $10 helps! With your help, we can make a tangible difference in the lives of families affected by this disease. Last year, your generous donations helped to raise close to $6500 for my team of walkers. My own personal goal is to raise $1500. You have already helped me get partway there.
To donate to my Walk to Defeat ALS: http://webgw.alsa.org/goto/loris

Find out more about ALS and the amazing work being done by the ALS Association here: http://www.alsa.org/


12 Responses to “Why Lori made me cry (It’s worthwhile reading. I promise.)”

  1. Jess and Lori, I sit here with tears streaming down my face, my grandmother who was as much a second mom to me as well as one of my closest friends died 3 years ago from ALS, she was an unusual case because hers didn’t start in her extremities an work its way in hers started in her throat. She was told at her diagnosis that she would maybe have 3 to 5 weeks, because she is a fighter she was with us 5 more months. Those last couple months however are some of the most awful I have ever had to witness.
    I can’t even imagine having to go through that with both parents.
    Lori I will find a way to support you if it means giving up my beloved diet coke to find the way to give you a donation for this wonderful cause then that’s what I will do. Thank to both of you for sharing your stories. I need to go mop up my keyboard now, thanks a lot ;O)

  2. Hi Carin

    Do I even need to mention I have tears in my eyes now?
    (Thanks a lot)


  3. Hi Carin,

    Thank you for sharing your story with us. I’m so glad you had your grandmother for longer than expected so that you had time to process and enjoy her for a little bit longer, but I’m so sorry for the pain of the last couple months.

    One of the things that makes ALS so hard to treat is the varying forms – and they have no idea yet what causes each or how to diagnose the difference. Thank goodness they’re starting to make some discoveries, but there is still so far to go.

    I thank you so much for your willingness to give up your diet coke to help find a cure and to help others with ALS. I imagine somehow I’d find a way to keep my diet coke and give up something else, like food, instead.

    Your willingness to help me in this fight brings tears to my eyes (the rest of you have them – why shouldn’t I?). I absolutely adore our romance community – it’s filled with the most warm-hearted, generous people there are in this world.

  4. Also just want to give a huge thank you to Jess and all the International Heat authors for hosting me today. I can’t tell you how much it means to me, Jess, that you’ve given me so many platforms to tell my family’s story. And thank you for sharing your own as well.

  5. […] and Lori are at International Heat today talking about how ALS has effected their lives. Please head over to Internatonal Heat to […]

  6. We need more research on these devastating illnesses, and less money spent on other less important things.

  7. Jess and Lori, first off bless you both, for opening a door for a dear friend. He was diagnosed with ALS 11/2 yrs ago. Bob calls him, “little engine that could”. Daryl is just amazing . Our prayer for ALS and other illnesses like mine will have a cure and make living an everyday life better for all who suffer.

    From your mouth to God and America’s ear, lets pray for a cure.

    • Deb, I’m so sorry to hear about Daryl.
      And yep, let’s pray for those cures. (Hopefully, Australia and the rest of the world will lend an ear too.)

      • Deb, I’m sorry to hear that you have a dear friend with ALS. I’m awed by the strength and grit that everyone I know with the disease shows. They are simply amazing.

  8. Thank you, Jess and Lori–I am in awe.

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