New Today-hey there

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easy

New member
Joined
Feb 11, 2008
Messages
9
Reason
DX UMND/PLS
Diagnosis
05/2004
Country
US
State
OK
City
Shawnee
im new to any support group re: pls and dont know how to start, but ive been diagnossed since 2003, im now 41 yrs old, maried, 2 kids, college grad, was athletic and handy around the hse, but now cannot walk or talk. i have a lot of tips for dealing with mobility (especially the sleeping issues you face) and other physical issues, but havent really delt w/ the emotional part too much. im open to questions and will share whatever i can to help. dont use punctuation and abreviate much...so bear w/me pls.
 

CindyM

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Hello Easy- welcome to the fourm although I am sorry about your DX. GLad you decided to join us. CIndy
 

easy

New member
Joined
Feb 11, 2008
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9
Reason
DX UMND/PLS
Diagnosis
05/2004
Country
US
State
OK
City
Shawnee
thanks. DX? = diagnosis?
 

Al

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Yes it is easy. Welcome from me too.
AL.
 

Whitsend

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Joined
Jan 8, 2008
Messages
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Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
Welcome Aboard

Well, Easy, if you have tips for the sleeping issues, bring 'em on. We'd all love to hear them.
 

olly

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PALS
Diagnosis
11/2007
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uk
hi easy

what took you so long to get here lol. ive had pls 8yrs, mobility is limited, speach / swallowing got worse past yr or so.sleeping is a big problem so any tips other than meds i already take will be most gratefull. welcome to the group:-D
 

easy

New member
Joined
Feb 11, 2008
Messages
9
Reason
DX UMND/PLS
Diagnosis
05/2004
Country
US
State
OK
City
Shawnee
BED REST...finally!

Well, Easy, if you have tips for the sleeping issues, bring 'em on. We'd all love to hear them.


sorry if these ideas seem basic but they have really improved my QOL.

1. wear anything that is microfiber-underwear & t-shirts...they usually have some spandex in them. Jockey has a brand called LIFE. or calvin klein - theyre great but $$$. you want clothes (to sleep in) to be fairly tight and microfiber is slick, making any movement easier. another benefit is it keeps the peg or j tube in place without having to use tape. a loose tshirt will make you feel like youre in a straight jacket when you try to roll over-if you still can

2. buy sateen sheets. or a high thread count-theyre expensive but worth the investment.

3. get a bed side grab bar.......if you dont already

4. a firm matress. i use a barriatric foam rated for 750lbs. im 6' 1" & weigh 180. but the firmness makes turning much easier. and the foam wont press agints pressure points (hips for me)...my dr. wrote a scrip for that too.

5. have your dr. get you a scrip for an adjustable bed. ive had 1 for about 1 month and when you raise your legs you can get much mor leverage to turn, adjust your shirt, scratch an itch, whatever...i delt with modifying my std. bed for 5 yrs. (cutting the legs off the frame) i dont know why i didnt ask for this before...ask your dr. for anything!

6. MOST IMPORTANTLY register with your nearest MDA clinic. they have a full staff of specialists (ot,st, pt,neurologists, resp. ther. AND they have a loan closet)...i got a $20,000 permobile wheelchair for free. i donated all my old mobility products too...its a revolving door for needs.

i'll probably think of more but this will get you moving in the right direction.

peace, easy
 

Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
Thanks easy. The info about the mattress is especially helpful.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
thanks easy

the info on bed is good as i despratley need new one,id thought about satin sheets so ill give them a try. im going to mnd clinic soon, my doctor refered me as my present neuro is a waste of space lol and i need more help.
cheers easy:-D
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Thanks for all the good info. I've been having trouble turning and never thought about the sheets and pajamas being an issue. And I should have. My mother had "Picks" disease and was slipping out of bed. The care givers suggested flannel sheets and less "slick" pajamas so she wouldn't slip around in bed. She was completely immobile but seemed to wiggle a bit.

Sharonca
 
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