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I'm n Effexor xr and haven't slept well for 2-3 yrs & finally on Klonepin, a miracle med that allows sleep. now have intense hip pain, only at nite when re-positioning. have tried pillows,cushions,fleece padding, heating pads, special teas, with Ultram (quite useless) & next considering hydrocodone groups. tried everything OTC with no relief Sooooo,finally able to sleep & pain wakes me back upall nite. Rats! What to do ? any ideas out there. my dr.s r of no help.
 
my post was sent off to moder.,except the listed moderators: al & rcharlton have passed away ? sooooo, who's moderating my post? How long will it take to return?
 
It has been less than a month that I have gone from being able to transfer with only the help of the walker to being virtually helpless. Diagnosed Jan.2012, it has been a gradual decline, giving me time to adjust to the changes. Then without warning I lost all strength in my legs and my upper body started to weaken significantly. Now I am unable to use the bathroom or take a shower without my husband trying to physically lift me, and more times than not I end up battered and bruised, and sometimes stranded until help arrives. With that being said I choose to put off using the bathroom until I am totally miserable and haven't taken a shower in three days. I am still in bed at 2pm because it has become such a nightmare to try to transfer to my PWC. My whole body hurts from unsuccessful efforts to transfer me and I only weigh 130 lbs. It doesn't help that my speech is so poor that I can't tell anyone that my foot is twisted and my knee is cockeyed and that it hurts like the dickens.
What now? I would appreciate any advice that anyone may have, I'm really need help
 
Cynthia, I left a visitor message on your profile page. Call your Clinic and get an in home visit from PT and OT to do an assessment of your home and to train your CALS in proper transfer techniques! You can find videos on you tu be demonstrating the use of transfer boards and lifts.
 
well Deb, i appreciate greatly your concern for me and suggestions. the ironic thing is ..........i AM an OT., for 40 yrs +. my last job was with 17 OTs & PTs whogive me equip and all the assistive devices available to try out & use if helpful. i have adapted my bath , kitchen &bedroom. my friends who r OTs & PTs r here every wk with brainstorms of ideas to try. I am completely blessed by their concern & kindness.
i have, over the yrs, worked with many many ALS pt.'s. doing Home Assmts, providing equip & ideas for simplification. Right before I stopped working,last Mar I hada ver y advance case arrive & i had to remove myself from his case following his asssmt i did.
am presently using transfer brd only for all tranfers+ w/c during dy.
i will let this dis run its course naturally & use no PEG, bi-pap, cough assist or anything else to prolong the inevitable. being fed,bathed,dressed,toileted, and virtually a lump with a brain is and has NO quality of life to me.
 
Hope, what a blessing it is to have your friends and former coworkers so involved with your care. My local PT and OT have been invaluable. I just wish that my insurance provided for more frequent visits than just an initial assessment and teaching. Some PALS have found that some of their friends just can not deal with their diagnosis and disappear.

I understand your desire to not prolong the inevitable. I go back and forth about getting a Peg, but I'm limb onset and just beginning to have a small bit of bulbar involvement. I do use Bipap and find that I sleep better. It's use has completely cut out the annoyance of having to get out of bed frequently to go to the bathroom.

I'm in PWC full time too and using the transfer board as well. We're still struggling a bit with exiting after showering, but each time it seems to get a bit easier. My daughter has taken over all household responsibilities and is my full time CALS.

There are moments and days where my feelings seem to echo those that you have expressed. Frustration is a frequent visitor. I'm just not quite ready to let go. I just wish that we lived in Oregon. That knowledge would be a great comfort to me. Until then I try to take it one day at a time.

I remember reading about another PALS who opted out of any supportive efforts. You might check out her posts. Her member name was Abbaschild.
 
hey deb----i have read sev of abbaschild's postings. i believe she's passed on --has she, do you know?
every morning when i wake, i'm firstly disappointed i'm still here, then i assess what ii've lost, as this dis. is moving at a pretty good clip. youre exactly right --- you deal with ea dy & make adjustments accordingly.
ever notice all the people that arent with us anymore--- even in the short time i've been on here, pooof, gone. inevitable
am w/c bound not, regular chair, but am noticing the diminishinig upper extremity creeping up. my loss has b een from the ground up. progressing from ankles, knees, hips, trunk, R hand *thankfully am L handed. use only transfer board for all transfers now
weaker cough, sneeze, blowing nose, which is partly diaphragm involvement. *think you mentioned "cough assistor", but don't reallly want any of the stuff , including the bi-pap.
am waiting ea dy for it to run its course. given 2-5 yrs. i'll probably be on the 2 yr. side of that.
 
Abbaschild has passed away, yes. Have you gone to the doc to be sure your hip pain isn't something like bursitis or other treatable condition? The one thing you shouldn't have to deal with is pain. It's the one thing I treat consistently.
 
not me ----have told my completely useless neuro about it & got no response. am done with him. i believe the pain is from atrophied muscles all around the hip jts & when laying on side,
pressure onto nerves . wanted to ask you,since youre closeby, is there aloan closet anywhere in central fl that you know of ?
 
Cynthia,
I'm sorry for your pain and sudden progression. Sounds like you need a Hoyer-type lift now for transfers. Your local ALSA chapter may have a loaner, or you can buy one w/ cash or using insurance. We would all recommend a powered rather than hydraulic one, though sometimes insurance will make you pay the difference, unless your caregiver is physically-impaired. Not sure what you have now, but a shower/commode chair will also help if you don't have one.

Hope,
Everyone sleeps differently, as you know, but with a foam overlay, a heated mattress pad and a head-elevated/back tilted/legs elevated bed position, my husband is so far able to sleep through the night on his back [w/ BiPAP, admittedly, which I realize you don't want] w/o repositioning despite pre-existing reasons for pain like herniated disks and dural ectasia, which ALS obviously doesn't help. To try to keep his hips, which were also previously diseased, aligned at night, we use a large foam belt just below and around both kneecaps, that normally is used for wheelchair positioning (plus pressure relief boots and small pillows under the knees, of course). Maybe that could help you.

Best,
Laurie
 
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