Recent content by nspoc

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    So sorry I never saw this message. My father was ill and died - did not visit the forum for a...

    So sorry I never saw this message. My father was ill and died - did not visit the forum for a few months. Yes, my friend is still with me - 6 years in my home, 4 years on a vent. She is quite paralyzed now - can move her hand less than 2 inches - but enough to signal me. Only her eyes move...
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    How long?

    Pat was diagnosed in December, 2004, but probably had symptoms since early 2002. She went on a ventilator in May, 2008. Her FVC was in mid-thirties, but she was on bi-pap 24/7 for abot six months prior to vent. She seemed VERY stable on Bi-Pap. Had a bad pneumonia that led to venting. We...
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    Feeding Tube Drama

    Terri, I am curious - why does she give you a hard time? Are you using a syringe to feed her? That can be annoying. We put the feeding in a gravity bag, hang it up and let it drip in over 45 minutes to an hour. The total in each bag is 1000 ml (formula, water, any extra fibersource, and...
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    Feeding Tube Drama

    Hi Terri - My friend Pat has been on 1500 calories (5 cans) of Fibersource HN, from Nestle, for 2 full years. No diarrhea, no gas, no real adjustment. She only takes nutrition by tube. She is about 5'3" and weights around 150 lbs - she has neither gained nor lost weight in this amount of...
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    Keeping track of who is from where

    We live in Olympia Fields, IL. Pat has been here for 5 years since diagnosis. But she lived in Los Angeles area most of her life. Was diagnosed at UCLA. Don't know where you weant that pin to go! Beth
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    To those who are trached

    Hi - I have cared for Pat on a vent at home since Aug., 2008. We have a nurses' assistant who works full time ($14.00/hour for 40 hours per week). She is very competent at all vent tasks and can handle emergencies. Her medical knowledge is muddled, so occasionally we go round and round, but...
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    I heard him play again!

    Netty - I cannot tell you how sorry I am! You have pages of responses - that tells you how much you mean to so many people. As for me - I am the caregiver, just like you. You have inspired and touched me more than you know. You are in the pantheon of my heroes. I wish you all the peace and...
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    Home Care for Trach - Info?

    Hi - Thought I'd chime in. We have never had the trach come out at home, although it did happen once in the hospital - very big emergency because it was rather new. As far as pets go, we have 2 dogs and a cat. Both dogs curl up next to Pat all day. Being terrier mixes, they shed very...
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    Dynavox

    Hi again, Beth - We, too, use a pencil with eraser for the touch screen - even that does not allow Pat to turn the Dynavox on, she is too weak. If you are not using the wheel chair then you need the other, rolling, mount - check out the Daessy website. I am not knowledgable about your...
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    Dynavox

    Hi Beth- My PALS has a Dynavox and it is a LOT to learn. We go through the Rehabilitation Institute of Chicago, not our ALS clinic. I know you guys in LA have a world class rehab place - Rancho something. Maybe you can get referred there. Also - on another thread I responded to you that I...
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    Physical Therapy student seeking advice

    Hi - The person in my care has had a lot of PT/OT experience. In most cases they push way too hard, do not get educated on the variations of ALS, and do not have enough range of experience in adaptive technology for neuromuscular disorders. What do I expect from you? I expect you to be an...
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    My mom was just diagnosed with ALS

    Hi Sonofals - Sorry for what you are going through. Don't know what hospital/clinic you are using - but I would call the Les Turner ALS Association - look them up at www.lesturnerals.org. They are a huge and unusual resource unique to the Chicago area. They have all kinds of resources to...
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    A Vent in Need ...

    Hi Beth - I have been following your posts for a long time and am quite an admirer. Anyway - I used to work at UCLA Medical Center, and the PALS I care for was diagnosed there and also worked there - so I have a familiarity with that place. It is very complex and bureaucratic unless you know...
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    Pill Crusher for Feeding tube question

    Hi - We bought a mortar and pestle at Bed, Bath and Beyond. Works great, lasts forever. Get a fairly big one - pills don't bounce out, we grind 14 pills to a fine pwder in less than a minute, very little effort. Also accommodates the water needed for putting into the tube. We tried pill...
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    ANY Recommendations on Power Wheelchairs for ALS Patients

    Hi - We had a Pride Quantum 600 with tilt, recline and power leg lifts - paid for by Medicare and insurance. After 2 years it is SOOO uncomfortable that Pat went ahead and purchased a Permobil c300 at her own expense. BIG difference in comfort. The other chair is too large in every way -...
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