Originally Posted By Labuda Ok, so it's barely been a month since we buried the last member of my family to die of ALS (aka Lou Gehrig's Disease, Amyotrophic Lateral Sclerosis, or Motor Neuron Disease if you're British), and I just found out that another one of my Daddy's cousins has just been diagnosed. Please send as many thoughts and prayers as you're willing to my Daddy's cousin Connie and her family that they're able to weather this as best they can. And, this is just me being selfish, but please add in something about this thing not taking anyone else in the family, or at least stopping at my Daddy's generation and not hitting any of my cousins who have kids, or my brother who has kids. Those of us without kids - not a big deal, I just want it to stop taking members of this family who may have passed it on and prolonged it. Oh, and for those of you who don't know - THIS disease is the reason I opted to never give birth. Anyhow, back to Connie and her family - send warm fuzzies, please. They JUST got he news and I know they'll be in a bit of a tailspin for a while here.
Originally Posted By amazedncal2 Warm fuzzies being sent in droves Labuda. ALS is one of the cruelest diseases. A friend of the family died from it a couple of years back. So, so sad.
Originally Posted By smedley Labuda, I am sending many good thoughts, I hope they do as well as possible.
Originally Posted By Mary Poppins Sending prayers for your family Labuda. I didn't know this awful disease had hit your family members.
Originally Posted By beamerdog Labuda, the warmest, most positive thoughts to your family and you. I think I've mentioned this before, but one of my friends had this disease. His wife, my closest friend, nursed him for almost 10 years until he finally succumbed. When he could no longer move or speak, he got a computer that would translate the tiniest movements of his forehead and speak as he moved a tiny metal "dot" placed between his eyes. My friend used to lovingly call him her Indian prince, lol. He never stopped living his life to the fullest. Despite his disability, he was a tremendous source of joy and support for my friend.
Originally Posted By Labuda beamer - I remember you having mentioned that, and I know you're not the only person here on the LP other than me and amazed to have been touched by it. Your friend was quite fortunate to have survived ten years - average for my family is about 2.5 years and shortest from first symptoms to death was my Daddy at seven months. Mary - yeah, sadly it's killed more members of my family than I can count... we've traced it back to my great-great grandfather Makovy, and have no idea how long before that it was in the family. Anyhow, one thing I know about this disease is that I know it better than almost any other lay person - I was little when my Grandma was diagnosed with it, but as I grew older, I learned all I could - have even made appointments with neurologists to discuss the disease. And, oddly, people tend to come into my life who are affected by it - I have to use two hands right now to count the number of friends I have whose families are affected by this disease. Anyhow, I do my best to be a resource for these friends and help them learn as much as they can. Just recently found out that a poker buddy of mine JUST found out it's in HER family so now I'm helping her learn. Oddest thing about this for me is that this disease affects roughly 1 in 100,000 in the US, yet here in a city of about 600k, I know seven people affected by it (i.e., they have a family member who's been diagnosed). This disease just surrounds me... I do the best I can to deal with that and at least try to help those who are not as knowledgeable as myself.
Originally Posted By Pixie Glitter I'm so sorry to hear this. Connie and your entire family are in my prayers.
Originally Posted By TINK-MOBILE May God's Angels lift you up at this time, our prayers are with your loved ones , God has already felt our heartfelt prayers without us even saying a word, peace be with you, may our prayers be answered Dear Lord...amen oxoxox Hang in Their Labuda..we are all right beside you...take care....ox
Originally Posted By iamsally I am so sorry to hear this. I wish there was more we could do than send warm wishes. My sister saw a dear friend from high school die from ALS. I remember how heartbreaking it was. You are all in our thoughts as you deal with the whirlwind of emotions that accompany this sort of diagnoses. ((((hugs to you all))))
Originally Posted By disney pete wishing all my positive thoughts to all your family ann (((hugs to them all)))
Originally Posted By TXDISNEYNERD I'll be praying for your family. What a horrible disease. I didn't know anything about it so to hear how it just rips thru families breaks my heart.
Originally Posted By awhippleALSTDI Dear "Labuda" and all of the supporters who are offering prayers, support and personal stories. I wanted to make sure you all knew about the work being done by the ALS Therapy Development Institute (ALS TDI). ALS TDI is a non-profit biotech located in Cambridge, MA. Our team of 30 researchers are focused on finding a treatment for patients living with ALS today. I would like to encourage you all to register for our newsletter and visit our site at: <a href="http://www.als.net/join/mailinglist.asp" target="_blank">http://www.als.net/join/mailinglist.asp</a> Your friend in the fight, Amy Whipple Midwest Regional Director ALS TDI
