hjlindley

hjlindley

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  • Sequoia
    My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....
    H
    hi, interested in your posts on pool therapy. sure works for me. was diagnosed with a form of ALS in Jan 8, 2001. By 2004 was nearly quadriplegic and lung volume at 47%. Pool exercise was not recomended but started anyways. It worked for me. I go every other day and have vertually stopped the progression. My specialist attributes it to my "positive proactive approach to the way the disease presented itself in me.
    mysisterskeeper
    just wanted to say hi. my sis has the distal slow progressing als also. she has had it for 12 years. I think we are rounding the final bend now. I hope that your als is slow enough that you can benefit from new discoveries. Have you heard of the neurx diaphragm stimulator thing? you have to get it implanted before your respiratory system gets too weak or your out of luck. By the time I found out about it, she was too weak. I look forward to seeing you around the forums
    hjlindley
    Hip flexors are weak and left ankle, never strong, is limiting. So my step daughter did the ALS walk for me in Houston. Looking longingly at wheel chairs at BJ's etc. Have an AFO, but am going to Wait as long as I can. My disease seems to attack the intrinsic muscles and leave the large muscle groups along, so I keep doing water aerobics (no muscle tears!) for stamina and strength. You and I are on the same slow path. I have put high fat food back in my diet, but no one in my family seems to die from heart disease. Have a DNR since I used to work in the trauma field and have visions of a 4 car pile up on 95, being rescued and rehabbed to be paralyzed from ALS. The hand thing is maddening! Dressing is ridiculous and forget button, zippers and zip lock bags! Check Richmond magazine..I have the great fortune to be one of the restaurant reviewers. I guess for both of us it is one day at a time.
    M
    Richmond Magazine! That's great! My dominant side has been the unlucky one, too. Stinks. Legs arent too bad right now, only need a chair for amusement parks, airports, stuff like that. Right arm and hand is the worst - all this rain today and couldn't hold the umbrella for much. I go to Duke - have family in Durham that we stay with and love the neuro there. Do you do the walk in October?
    M
    Hello fellow Richmonder! Stinks to meet in this way. Slow progresser here too, mostly right arm and quads/hips. Still working full-time at MCV and live in Brandermill. As everyone here is, I'm here if you ever need an ear.
    L
    Yeah. The same for me. I have been slowly progressing too, and have not gone to the support groups either. I do really like Sarah though. She has been a big help to me. I see Dr.Burns also. He is great. Always willing to accept information from me as well as give it.
    I was dx at Duke, and when I first went to UVA, they were all pushing me to get a feeding tube b/c I had lost some weight. I think that they were lumping me into the category of average ALS patient (which i believe i am not b/c of progression). My father also had something similar for 17 years and he never had a feeding tube. But I stopped working and now make a conscious effort to eat good and I have maintained my weight.
    My symptoms stayed in speech and swallowing liquids for years, but in 2010 my balance was affected. I now use a walker when I go outside. I have some left hand weakness and a sore neck a lot of times, but I think that I fare pretty well.
    See you around the forums and take care my fellow SP
    L
    Hey
    I live close to you. Do you go to the support group 2nd Tues. in Richmond ? I have not been yet. Have you tiled with Sarah Stein? What a great gal
    hjlindley
    I have had this hanging over my head for 4 years through 2 spinal fusions, a new house, a new husband and a new puppy. the only thing constant is change. Mine is extremities and right now the small muscles so I am still walking and doing water aerobics 3xweek. Mostly okay days, but, asI am sure you knnow, the fatique is killer. How are you doing?
    NCGIRL
    Just wanted to say Hi... I was also diagnosed in October this year too. Hope you are handling it well.
    Donna
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