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15 replies to this topic

#1 scottwh

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Posted 16 July 2014 - 07:56 AM

Im guessing this is a issue for a lot of us,

you need a hard bed to turn over

but since it hard to turn over you get sore spots so need a softer bed

anything working for anybody?

I would love a good sleep

thanks i advance

s

 

 

 

 

 

 



#2 Beau's Mom

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Posted 16 July 2014 - 10:28 AM

I added a 2 inch egg crate mattress to my bed and it helps tremendously. I also have a bed rail that fits under the mattress on each side, and a Posey bed cradle to keep the covers off my cramping toes. Any medical supply should have all three items.

 

Dianne


I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#3 scottwh

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Posted 16 July 2014 - 11:55 AM

thanks 

I was thinking what mattress people have found helpful but a rail sounds like it would be helpful

was going to hang a rope ect from ceiling can't decide if its comedy or tragedy



#4 AnthonyB

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Posted 16 July 2014 - 04:08 PM

Memory foam mattress best thing i ever bought.



#5 FlyBaby

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Posted 16 July 2014 - 06:07 PM

Actually a rope from the celling is exactly what I used for years, attached to a eye bolt screwed into a log directly above the bed (log home). In a conventional home, make sure you find/use at least a 2X6 to attach the rope to. btw, I still use my rope trick above m glider/rocker out on the covered patio here.......... helps me get up and out of the chair....


Michael

Current age= 55

First symptoms: 1975

Dx.

Parkinson's Disease, Ataxia

 

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14

current settings:

2.0v Left, and 3.1V Right 

 

"I will do what i can, while I can, and when i can't, I'll do something else"

 


#6 livingwithtau

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Posted 16 July 2014 - 10:28 PM

A firm bed does not need to be hard. I have a Stearns and Foster but other brands can be comparable. It is the number of coils in the mattress that provide the stability and then you choose firm, plush, etc. according to your comfort level for the covering. AnthonyB also mentioned memory foam which is another option either as the top layer or for the whole mattress. We did tests on all the different options at a good mattress store. They offered free return if not satisfied. They also have frames which can raise or lower each side of a split king or queen but it was expensive. (Like a hospital bed but way more plush). A quality mattress with good support but the ability to prevent pressure areas is worth the investment for the precious sleep we all need.
Age 66
Dx in August 2013; symptoms since 2011 in left hand/arm. No tremor. Stiffness in hips and lack of arm swing.
Atypical Parkinsonism; probably CBD
Meds: Amantadine 100 mg 2x/day; Azilect 1 mg daily
Work full time as RN

#7 Loving Life

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Posted 17 July 2014 - 11:44 AM

I have a Sleep Number bed, and it is perfect for me!  I can always adjust the firmness if need be to meet my needs of the night.



#8 afroney

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Posted 17 July 2014 - 01:23 PM

Memory foam mattress best thing i ever bought.


Agreed. Best $500 I've ever spent.

#9 bjenczyk

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Posted 17 July 2014 - 03:38 PM

Memory foam here, too.  I do wake up every morning with bad back pain, though.  I am pretty sure it is because my SInemet has worn off, and my rigidity is at its worst.  Once my Sinemet kicks in for the day the back pain fades.


Dx'd 3/12 @ 48. Symptoms 7 years prior.
carbidopa/l dopa 25/250 6x daily, CR 2 pills at bedtime
No DaT scan, normal MRI. Dx'd by observation of neurologist,

Symptoms: left side rigidity when "off", sleep disruption, no sense of smell, minor fatigue, back pain

 

Still an optimist - what is wrong with me?


#10 scottwh

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Posted 20 July 2014 - 09:16 AM

thanks for all the replies and I wish you all a good nights sleep



#11 KimAgain

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Posted 20 July 2014 - 09:31 AM

Pillow top bed here... BUT, it's all in the sheets and nightwear!  Satin or sateen sheets (can be a little warm, if you have hot flashes, but they are s-l-i-c-k!!) and satin PJ's or a nightgown, as is your preference.  This makes turning over much, much easier.  


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#12 scottwh

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Posted 20 July 2014 - 09:35 AM

ty kim

 

I will try this 

the satin that is 

not to sure about the nightgown

s



#13 KimAgain

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Posted 20 July 2014 - 10:01 AM

ty kim

 

I will try this 

the satin that is 

not to sure about the nightgown

s

Last time I had an off meds test at Vanderbilt, my husband and I stayed in a hotel to stretch the drive out over two days--we swore we'd never do that again!  Since then, we take our RV, which is equipped with an extra soft mattress and sateen sheets.  The night we stayed in the hotel, I had been taken off meds for 24 hours and had my DBS switched off... in the middle of the night, I awoke, hanging off the side of the bed with absolutely NO ability to pull myself back into the bed.  I was trying to quietly wake my husband, because he was sleeping super close and I feared, if he awoke with a start, that would be the end of it for me--I'd hit the ground in the manner I was hanging--head first!  Luckily, he awoke gently and was able to pull me back into the bed, but I came away from the experience with a valuable lesson--friction in bed, for a Parky (we're talking SHEETS here, you understand?!!) is a BAD THING!!  I slippy slide when I turn in bed these days and it is much, much easier.  A word of caution, however--it can also make getting back into bed if, like me, you are 5ft 1inch and the bed is 4ft off the ground!  I love my old bed, but the time is coming of me to go low, low down.  Slipping off the bed is a breeze, but I have to pull myself up with the aid of the headboard to get in. 

 

I'm thinking of joining OverSharer's Anonymous.  Do you think I have a problem??!


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#14 scottwh

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Posted 21 July 2014 - 05:10 AM

not at all K

you brought me a smile and I just ordered satin sheets

llike I said tragedy or comedy



#15 Annikin

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Posted 21 July 2014 - 07:53 PM

I have an i-comfort gel bed so of course, I sleep on the couch.



#16 scottwh

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Posted 22 July 2014 - 09:36 AM

lol

that pd in a nutshell







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