PatientsLikeMe : ALS/Motor Neuron Disease Community

Caregiver	My PALS	About Me
Kathryn	bluffy	I care for my husband, Jeff Repetto (Bluffy), 44, since his diagnosis in August of 2003. He has progressed very quickly. He is now using a feeding tube, on a vent, and can only communicate by raising one eye for yes. His other eye is closed most of the time. He is now almost locked in. We've been through almost everything, so we have lots of useful information to share. The one thing I always say, no question is too stupid.
penmc
alcinderalla		I was first started having trouble in 2007 and the Dr wanted to do cervical surgery to rule out ALS big mistake. I am writing this for my daddy. We took for first surgery in June he lost all use of right hand after coming out of surgery, he had the second surgery in November 2007 and he progressed more he lost ability to walk by first of 2008 and by Feb. or March he was in wheel chair . He could not use the power chair cause he could not hold himself up he had a hard time in a regular wheel chair , by May he went to Dr and he confirmed he had ALS DUH we could see that !! In july he passed R.I.
Rick's wife		Rick and I have been married for 25 years. I am 42 and he is 48. He was diagnosed 7/04. He is the LOVE of my life. We have two children, Casey, son, 23 and Erin, daughter, 20. We are a very sports-oriented family. All played in high school and all but me in college. We live in a very small community so it is hard to find resources sometimes. Even knowing what I know now I would marry him all over again. As a matter of fact I did Nov./2007(25th anniversary) I proposed this time! We are blessed in finding mutual love and respect. A lot of people never do..... Tammy
andyvaughn		My name is Andrea, my husband is Jim. He was diagnosed Feb 20 - 2008 w/bulbar onset ALS. We have 2 children, 17 y/o daughter and a 13 y/o son. My husbands initial symptoms were slurred speech, followed almost immediately by arm and leg involvement. He is on rilutek, hoping to start lithium in the coming weeks.
Kristen B		My beautiful husband passed away Sunday Feb 8, 2009. No extreme measures, no feeding tubes, no in home nurses, nothing. He refused to prolong this way of life, where he could do little more than exist. He thought of us too. Didn't want to put us through that. I admire his decisions, so do my children 6, 10. Although not very well, he could walk, talk, eat up until he went into the hosp. Even then he was calm, saying I'm having trouble breathing but I want to wait till the kids get off to school. I didn't wait! He wrote he was done fighting and died peacefully a couple days later in the hosp.
Al'sEllen	justal	Hi, My name is Ellen, my PAL is AL, he is my husband (25 years)and my best friend. We have 2 great kids, a daughter 25 and a son at home 17. I work full time as a teacher assistant (3-3rd grades) 50- 8 or 9 year olds... never a dull moment! Home... this year we will have a wedding, a High School graduation, off to college and oh yes ALS just to keep things interesting. We laugh alot, love alot, and live a blessed life.
annalien
virdenbb
Caring for my Husband		I am 40 years old and married for 17 years to Ralph who was dx in March of 2006 with Bulbar-onset of ALS. My husband was the first PALS in the state of New Mexico to have a tracheostomy and ventilator. Everyone is learning a lot. We are raising 2 teen daughters. I've had a strong walk with God since 1989 which has kept me grounded, strong, and at peace. I like to travel, work, read, write, dine out, and take care of my family. It's been a very difficult road with so much that has been learned. We have 8 other family caregivers that take shifts as he needs 24 hour care now. Sound like you?
LOVEMYMOM
BeckyB	Bobby B
earthpower
pjjack6	Papadun	I am 52 Years old . My husband was diagnosed August 2005. Started in his left hand. Now has progressed to his shoulders. He can still work but that is becoming more impossible. I have quit my job to finish work on our house for selling. We have 4 children : 1 Girl and 3 Boys. Ages: 26 to 19.
cynragan		my mother (Sig) was diagnosed with ALS last november. There is a book on the New York Times Bestsellers list now titled "not quite what i was planning". pretty much sums it all up. except change the "I" to "we". My family was blindsided. we are closer now than i ever imagined we would be. my mother is my role model, my go-to, my favorite Diva!, my mom, my "advisor" ( ! !), my friend. my mother has always been - and continues to be an enormous part of my day to day life. i just got married - my mother was THE most beautiful and involved MOB (mother of the bride)! find a cure for ALS!
nstapp86	Rick Stapp
Leslies Grandson
pankuzz89
JDO		Update... My mom passed away March 23, 2009. I'm so very sad...... ====================================================== A little bit about me. I am 36 years old, married to my high school sweet heart, and have a five year old daughter and a 2 year old son. My mother was recently diagnosed with ALS. (August 20th 2008). I am hoping this site will give us some support as we go through this journey with her.
love my mom

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