CindyRN
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  • Hi Cindy,
    Haven't heard from you in awhile. How are things going for you? My dad is now living in a assistant living center in Dallas near my brother and sister. It has more complex care then others. It's kind of like a nursing home but he has his own apartment. They even have happy hour everyday. lol Take care, Kim
    Hi Cindy,
    Hope you are doing okay. Just wanted to stop by and wish you a Happy Easter. I will probally be spending most of it with my dad. We are planning on renting the movie Parental Guidance with Bette Midler and Billy Crystal in it. My husband will be taking the kids over to his parents. He said I could go over to his parents if I wanted. But, I would feel to ackward and unwelcome. So, we plan on doing something Saturday with my dad all together. Dad is doing so-so. Its so hard to gauge with this disease. He spends alot of time watching movies on Netflix. Take care, Kim
    Hi Cindy,
    How are things going for you? My dad is doing so-so. He had a pulmonary function test the other day and the results were good. Dr. said he doesn't need a bi-pap yet. He had been originally using one just at night. But, he seems to be doing better in that regard. He still eats on his own though it takes awhile since he's losing use of his hands and his arms are getting alot weaker. My dad has a family friend who is his 24/7 caregiver and we also have two back-up people. I am unfortunately staying at my dad's due to some marital issues. Got alot of stress on me worrying about my dad and then the other stuff going on. Life isn't easy is it? You are in my prayers Cindy and hope you are doing okay. Kim
    Geez Cindy... Just saw your message. Duh! Is me. So, what are ya gonna call your wheels? We still haven't sold and builder of our new place has extended closing on our purchase with no penalties. Personally, I think it's God's hand... He knows I didn't want to move in the winter. Knock on wood I am still a member of the no falls club! Mostly, cuz I've been staying indoors lately... But that still counts. Hope you learn to drive your wheels without running anyone over!
    Hi Cindy,
    We spent a nice Christmas Eve at my house with my dad. He is doing so-so. He is getting alot weaker now in the arms which is frustrating him. The VA finally got a wheelchair ramp installed going up to his front door which is really nice. Dad caught the flu right after Christmas and luckily got put on a strong antibiotic and is doing fine now. We are hoping to get dad out more once we are done with flu season. He is wanting to go see a movie. My mom and dad owned the movie theatres in our town while I was growing up. Take care, Kim
    hello cindy born and raised in mt, now reside in mo after retiring from army in 1973 dx 2/2010 but still able to walk, talk, eat, breath and drive on my own. trulely blessed, in second drug trial, do eastern medicine.
    Hi Cindy,
    Thinking of you. How are you doing? My dad is back living at his home for at least awhile. I was so happy to have him home. I had missed him so much while he was living in Dallas with my sister and her family. We have a family friend who moved in to be my dad's full-time caregiver. We also just hired another caregiver for relief. Plus, my husband, aunt, and I are helping out too. Can't wait until next week is over. Our twins will be taking their first high school exams at the end of the week. Our son hasn't been too motivated this year. I think he's been pretty upset about my dad and that is a little bit of it. I think our son has been a little depressed. The first time he smile in a long time was when dad came home a few weeks ago. Take care. You are in my prayers. Kim
    Hi Cindy,
    How are you doing? My dad is coming home the Wednesday after Thanksgiving. I am excited but yet scared. I haven't seen him since Labor day even though I have seen pictures and we just skyped with him last night. I think it's going to be a big reality check for me on what is really going on with him. Dad's spirits are still good thank goodness. His favorite thing to do right now is go to the movie theatres. My mom and dad used to own movie theatres as I was growing up. Wish they did still so I could get in free again. Lol Take care, Kim
    Hi Cindy,
    Hope you are doing well. Our youngest son just got back from visiting my dad in Dallas. My dad is 78. His progression was moving pretty quick for awhile but now seems to have tapered off. We are praying it stays that way. He's been waiting forever to see if he gets in a clinical trial or not. He was supposed to find out last week but now they said it'll be another 10 days. We are praying he gets in because his neuro said the drug looks really promising. I'm not sure of the name of it though. If he gets it I will post and let people know about it and how he gets along. Take care, Kim
    Hi Cindy,
    How are things going for you? Do you take the drug Ritulek? My dad does but I don't know if it's helping or not. He does use a bi-pap at night and he sleeps 100% better with it. My dad goes to a ALS Clinic in Dallas. He is on a list to partcipate in a clinical trial. He will probally find out this week if he's been accepted. I'm praying he gets in but am afraid they will pass him up due to his age. He's 78. I see you are 46 like me. My husband and I have been married for 19 years as of Sept. 11th. We have twins (boy/girl) who just turned 15 and then another boy who will be 9 in November. Take care and drop a line when you have time. Kim
    Cindy - I'm the 4th of 6 kids. what a coincidence!. (58 yrs). Still lucky to have my parents - 92 yrs old and still living independently in the town I grew up in - and in the same house. About an hour away. I'm lucky - and my 2 sisters are really close- we have fun together.
    Sure you don't wanna call him Rocco? Sorry 'bout that.

    Lleft hand & fore arm are most affected. Hand has webbed look. I have pain in upper left back & shoulder - which I think is the weight of my arm. Thankfully - no paralyses - fingers have full range of motion - but little strength. I am mobile - legs often feel rubbery. I suffer most from oppressive fatigue. Takes forever to get chores done & small tasks are monumental. Learning to ignore dust bunnies. Today was a wash-out - wallowed in self pity - that's a first for me ( hope the last). We have a 2 storey condo - and so far so good - likely will have to move. This is a strange disease. I've been short of breath - take Ventolin - will tell neuro on the 16th. It's my first appt. since Dx day. I,ve not even been to the ALS clinic yet.

    Can't imagine how bad you must have felt on those back stairs Cindy.






    When are you due for next appt?. I can't imagine how scary it was for you on those back stairs Cindy.
    Yes, true muscle atrophy without much weakness is not common . . . but can be seen if the condition has stopped progressing and the other unaffected muscles take-over for those that have atrophied. It's something else that points away from ALS.
    It would be important to see the results of the January EMG to compare to the October EMG. Can you get your hands on them?
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