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mattresses for parkinsons patients


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#1 Gretchen McFalls

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Posted 05 March 2012 - 09:12 PM

Hello,  

I have parkinsons and have difficulty sleeping because after a few hours of sleeping on my side I get pain in my hip -  sort of pressure point pain.  I've heard this is a symptom of Parkinsons.  I can't sleep on my back because of sleep apnea and degenerative disk disease.  So I have to turn to the other side, which is difficult (I've heard that is a Parkinsons symptom too).  My question is have any of your parkinsons sufferers found a mattress that has support, so they can change sides, and still have some softness so they don't get pressure point pain?  I appreciate your time.

#2 Rogerstar1

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Posted 05 March 2012 - 11:05 PM

Hello,  

I have parkinsons and have difficulty sleeping because after a few hours of sleeping on my side I get pain in my hip -  sort of pressure point pain.  I've heard this is a symptom of Parkinsons.  I can't sleep on my back because of sleep apnea and degenerative disk disease.  So I have to turn to the other side, which is difficult (I've heard that is a Parkinsons symptom too).  My question is have any of your parkinsons sufferers found a mattress that has support, so they can change sides, and still have some softness so they don't get pressure point pain?  I appreciate your time.


Gretchen - I'm very familiar with the problems you describe right down to the 'pressure point pain' which I'd describe back then when I had it the same way you do. It is a point near the hip from which all the pain radiates and there is an awful lot of it. (pain). My friend would take her thumbs and press on the point with nearly all her body weight and it felt so nice but of course she couldn't do it for very long. I think a firmer mattress might help with that pain and turning in bed a little, too...I need and have been intending to get one. Turning in bed problems are classic PD. What has helped me is the fact that my bed is what is called a "three quarter bed" made in the 1850s to 1870s when people were smaller. It measures only 70 inches long and is 52 inches wide. I sleep alone and it is the perfect size with all the changes I need to go through to get myself turned over every 1.5 to 2.0 hours. Another advantage of the bed is that it has vertical spindles down at the foot of the bed comprising the foot board. I can hook my ankle into them and my legs can then exert some leverage to get me flipped over or otherwise manuvered. My hands can grip bed slots, posts or parts of the head board and I can usually get spun. Frequently windng up a bit cross ways on the mattress which is why the 3/4 size works so well. A twin bed would be too small and a regular double bed would be too large. My antique bed offers just the right spots, posts, openings, etc. for me to pull, push and and brace myself to get turned over. I'm 5'11" by the way. I'll try and find an example of what I'm referring to on ebay. Ok, this is nearly my bed right here.

http://www.ebay.com/...=item5d32587762

My footboard is a little better because there are more vertical spindles and they extend lower than illustratd. These beds can be found for $100 but require custom mattresses due to their odd ball size. I just found a guy in NY who will be making me a new mattress for $300 and shipping it to Wash., DC for $30. That price, you can't beat with a stick! Drop me a line if you'd like a phone number for the company.

Other tricks: The sheet you sleep on needs be tight on the mattress. When tight the bottoms of your feet can get more of a "purchase" by which I mean traction. You don't want your feet to slide when you are using them to reposition your lower extremeties before the flip. More on this momentarily. Your sheet should also not be silk or smooth with many threads per inch. Fewer threads per inch equals a rougher surface and that roughness will be helpful ---especially when you need to kick yourself up in to a partial sitting position using your feet to assist your arms in getting flipped over. Sometimes working yourself into a sitting position is the only way you'll be able to turn over without assistance. Getting traction with the soles of your feet is critically important to getting your butt scooted up under your torso and achieving that sitting position from which you can arise out of the bed altogether. And oh yes, to be sure, I frequently have to get myself up, entirely upright, standing, feet on the floor so I can spin around and flip back down on the mattress on the side (stomach or back or side) I want to try getting back to sleep on.

My 'invention' used several times a day is a spray bottle filled with water on the night table. With it I can dampen the sheet or the bottom of my feet to obtain that 'purchase', that foot traction which impowers my legs to assist in getting around on the mattress. Especially in the winter when the air is dry this misting of sole or sheet is a big, big help. In summer humidity can sometimes serve the purpose.

Back to that pressure point...try and see whether an extra Sinemet pill will provide some relief. Ascertain if the pain appears when dopamine levels deplete. I think mine may have been my very first bout with dystonia (aka distonia). After maybe a year it went away but shortly reappeared in my left elbow which is my bad side. Elbow problems are bad news for bed mobility.

best to you Gretchen.

Roger

Edited by Rogerstar1, 06 March 2012 - 03:06 PM.


#3 Jay-Jay

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Posted 06 March 2012 - 02:13 AM

This is such a huge issue - sleep, or lack thereof. I love hearing about the different ways folks deal with the difficulties, and I love hearing people explain what I feel every night to a tee. It's just comforting in some way. Thank you Gretchen and Roger.

I have the hip pain and the same kind of pain in my shoulders. I also have a lot of lower back pain which makes lying on my back or stomach uncomfortable as well. So needless to say, there's a lot of flipping back and forth all night long, which as Roger described, is not easy to do.

Once when my husband and I were shopping for mattresses for our kids' beds, I took the opportunity to try out some mattresses myself. The tempur-pedic that was adjustable so that my head was slightly elevated as well as my knees - was heavenly. I could lay on my back without pain! I was so comfortable - I really wanted to shoo the salesman and my husband away so I could take a nap! Unfortunately, the pricetag is just too high for us, so it's just not an option. I didn't get to try it out laying on my side, so I don't know if it would help with the hip and shoulder pain. I'm wondering if anyone else has tried this kind of mattress.

My MDS has also told me to take a Sinemet at night if I wake up and can't get back to sleep - he said to take a half a pill, because it would dissolve faster, and also to take it with soda if possible, for the same reason. The sooner it gets to the brain, the sooner you can get back to sleep!

Janet

#4 Silverfoxx

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Posted 06 March 2012 - 05:03 AM

Hi Gretchen,

Like you, but for differing reasons, I must sleep on my side as well. I purchased a Ssimmons mattress with a Pillow Top. This worked for a while, but there was a problem with me rolling off the bed. Quite skocking being awakened by hitting the floor. So, I purchased a 2" thick Memory Fosm Pad for on top of my mattress. it proved beneficial in two ways; I no longer have the pressure point issues on my hip. and I don't roll out of bed as often!


Regards, Jim Evridge


Hello,

I have parkinsons and have difficulty sleeping because after a few hours of sleeping on my side I get pain in my hip - sort of pressure point pain. I've heard this is a symptom of Parkinsons. I can't sleep on my back because of sleep apnea and degenerative disk disease. So I have to turn to the other side, which is difficult (I've heard that is a Parkinsons symptom too). My question is have any of your parkinsons sufferers found a mattress that has support, so they can change sides, and still have some softness so they don't get pressure point pain? I appreciate your time.


Edited by Silverfoxx, 06 March 2012 - 05:13 AM.

"Sometimes our light goes out but is blown into a flame by another human being. Each of us owes our deepest thanks to those who have rekindled this light." Albert Schweitzer

#5 Rogerstar1

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Posted 06 March 2012 - 03:02 PM

Upon reading Jay-Jay's and Jim's respective posts it dawned on me that my own presented in this thread contained some errors. The hip pain I experienced for a time several years ago was not related to contact between my hip and mattress. My pain point was on my hip and felt like it was coming from a specific nerve; like where two muscles were pulling in opposite directions. My neurologist later diagnosed distonia (aka dystonia) in my left elbow which fortunately was somewhat responsive to L-dopa. Earlier today when I wrote of suspecting my hip pain was the first sign of dyskinesia I meant to say distonia.

And this morning when I awoke I was reminded of how variable symtoms and conditions can be even from day to day, hour to hour. I awoke at about 7:00 am pretty much frozen. Having fallen asleep with the gas fireplace on in my bedroom the temperature was about 85 or 90 degrees. My body had perspired so I surely didn't need my spray bottle. Quite to the contrary sweat was sticking me to the sheet and my inability to slide was the problem, not the loss of traction from the bottoms of my feet. And the problem was pressing due to the need to urinate. It took me about 10 to 15 minutes to get up and out of bed and stand up by it's side so I could void into a urinal. And I was working at it! With silk sheets I might have been able to cut that time in half. When I collapsed back in bed the sunshine was flooding through the window. I have a solar powered prism** which turns and produces dozens of circulating raindows (a spectrum) all over the walls for about 25 minutes when the sun is out and at just the right height in the sky. If you have a cat and one of these devices watching him or her freak out chasing those elusive rainbows spinning about on the walls, floor, furniture and ceiling is better entertainment than Al Roker and the Today Show gang. And if you're like me you've got 40 minutes to kill waiting for the Sinemet to reach your substania nigra and enable activities beyond watching a house cat and envying her nimbleness.

**http://www.amazon.com/Kikkerland-1588S-Solar-Powered-Rainbow-Maker/dp/B000068UG6/ref=sr_1_1?ie=UTF8&qid=1331063575&sr=8-1

Edited by Rogerstar1, 07 March 2012 - 10:32 AM.


#6 Gretchen McFalls

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Posted 29 March 2012 - 08:36 PM

Gretchen - I'm very familiar with the problems you describe right down to the 'pressure point pain' which I'd describe back then when I had it the same way you do. It is a point near the hip from which all the pain radiates and there is an awful lot of it. (pain). My friend would take her thumbs and press on the point with nearly all her body weight and it felt so nice but of course she couldn't do it for very long. I think a firmer mattress might help with that pain and turning in bed a little, too...I need and have been intending to get one. Turning in bed problems are classic PD. What has helped me is the fact that my bed is what is called a "three quarter bed" made in the 1850s to 1870s when people were smaller. It measures only 70 inches long and is 52 inches wide. I sleep alone and it is the perfect size with all the changes I need to go through to get myself turned over every 1.5 to 2.0 hours. Another advantage of the bed is that it has vertical spindles down at the foot of the bed comprising the foot board. I can hook my ankle into them and my legs can then exert some leverage to get me flipped over or otherwise manuvered. My hands can grip bed slots, posts or parts of the head board and I can usually get spun. Frequently windng up a bit cross ways on the mattress which is why the 3/4 size works so well. A twin bed would be too small and a regular double bed would be too large. My antique bed offers just the right spots, posts, openings, etc. for me to pull, push and and brace myself to get turned over. I'm 5'11" by the way. I'll try and find an example of what I'm referring to on ebay. Ok, this is nearly my bed right here.

http://www.ebay.com/...=item5d32587762

My footboard is a little better because there are more vertical spindles and they extend lower than illustratd. These beds can be found for $100 but require custom mattresses due to their odd ball size. I just found a guy in NY who will be making me a new mattress for $300 and shipping it to Wash., DC for $30. That price, you can't beat with a stick! Drop me a line if you'd like a phone number for the company.

Other tricks: The sheet you sleep on needs be tight on the mattress. When tight the bottoms of your feet can get more of a "purchase" by which I mean traction. You don't want your feet to slide when you are using them to reposition your lower extremeties before the flip. More on this momentarily. Your sheet should also not be silk or smooth with many threads per inch. Fewer threads per inch equals a rougher surface and that roughness will be helpful ---especially when you need to kick yourself up in to a partial sitting position using your feet to assist your arms in getting flipped over. Sometimes working yourself into a sitting position is the only way you'll be able to turn over without assistance. Getting traction with the soles of your feet is critically important to getting your butt scooted up under your torso and achieving that sitting position from which you can arise out of the bed altogether. And oh yes, to be sure, I frequently have to get myself up, entirely upright, standing, feet on the floor so I can spin around and flip back down on the mattress on the side (stomach or back or side) I want to try getting back to sleep on.

My 'invention' used several times a day is a spray bottle filled with water on the night table. With it I can dampen the sheet or the bottom of my feet to obtain that 'purchase', that foot traction which impowers my legs to assist in getting around on the mattress. Especially in the winter when the air is dry this misting of sole or sheet is a big, big help. In summer humidity can sometimes serve the purpose.

Back to that pressure point...try and see whether an extra Sinemet pill will provide some relief. Ascertain if the pain appears when dopamine levels deplete. I think mine may have been my very first bout with dystonia (aka distonia). After maybe a year it went away but shortly reappeared in my left elbow which is my bad side. Elbow problems are bad news for bed mobility.

best to you Gretchen.

Roger



#7 Gretchen McFalls

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Posted 29 March 2012 - 08:40 PM

Gretchen - I'm very familiar with the problems you describe right down to the 'pressure point pain' which I'd describe back then when I had it the same way you do. It is a point near the hip from which all the pain radiates and there is an awful lot of it. (pain). My friend would take her thumbs and press on the point with nearly all her body weight and it felt so nice but of course she couldn't do it for very long. I think a firmer mattress might help with that pain and turning in bed a little, too...I need and have been intending to get one. Turning in bed problems are classic PD. What has helped me is the fact that my bed is what is called a "three quarter bed" made in the 1850s to 1870s when people were smaller. It measures only 70 inches long and is 52 inches wide. I sleep alone and it is the perfect size with all the changes I need to go through to get myself turned over every 1.5 to 2.0 hours. Another advantage of the bed is that it has vertical spindles down at the foot of the bed comprising the foot board. I can hook my ankle into them and my legs can then exert some leverage to get me flipped over or otherwise manuvered. My hands can grip bed slots, posts or parts of the head board and I can usually get spun. Frequently windng up a bit cross ways on the mattress which is why the 3/4 size works so well. A twin bed would be too small and a regular double bed would be too large. My antique bed offers just the right spots, posts, openings, etc. for me to pull, push and and brace myself to get turned over. I'm 5'11" by the way. I'll try and find an example of what I'm referring to on ebay. Ok, this is nearly my bed right here.

http://www.ebay.com/...=item5d32587762

My footboard is a little better because there are more vertical spindles and they extend lower than illustratd. These beds can be found for $100 but require custom mattresses due to their odd ball size. I just found a guy in NY who will be making me a new mattress for $300 and shipping it to Wash., DC for $30. That price, you can't beat with a stick! Drop me a line if you'd like a phone number for the company.

Other tricks: The sheet you sleep on needs be tight on the mattress. When tight the bottoms of your feet can get more of a "purchase" by which I mean traction. You don't want your feet to slide when you are using them to reposition your lower extremeties before the flip. More on this momentarily. Your sheet should also not be silk or smooth with many threads per inch. Fewer threads per inch equals a rougher surface and that roughness will be helpful ---especially when you need to kick yourself up in to a partial sitting position using your feet to assist your arms in getting flipped over. Sometimes working yourself into a sitting position is the only way you'll be able to turn over without assistance. Getting traction with the soles of your feet is critically important to getting your butt scooted up under your torso and achieving that sitting position from which you can arise out of the bed altogether. And oh yes, to be sure, I frequently have to get myself up, entirely upright, standing, feet on the floor so I can spin around and flip back down on the mattress on the side (stomach or back or side) I want to try getting back to sleep on.

My 'invention' used several times a day is a spray bottle filled with water on the night table. With it I can dampen the sheet or the bottom of my feet to obtain that 'purchase', that foot traction which impowers my legs to assist in getting around on the mattress. Especially in the winter when the air is dry this misting of sole or sheet is a big, big help. In summer humidity can sometimes serve the purpose.

Back to that pressure point...try and see whether an extra Sinemet pill will provide some relief. Ascertain if the pain appears when dopamine levels deplete. I think mine may have been my very first bout with dystonia (aka distonia). After maybe a year it went away but shortly reappeared in my left elbow which is my bad side. Elbow problems are bad news for bed mobility.

best to you Gretchen.

Roger



#8 Gretchen McFalls

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Posted 29 March 2012 - 08:51 PM

Roger,

Your post was interesting, but I still want to sleep with my husband if at all possible, so I'm looking for a mattress that will fit a queen sized bed. I tried a 3" thick memory foam mattress topper. I have to sit up in bed and lift my butt by putting my weight on my hands and arms and the memory foam was just too thick to offer much support for my hands. So I tried an eggshell crate mattress topper that was half as thick and now I can shift positions but I get pressure pain in my left hip and right shoulder. I wonder if there is a mattress with a solid foundation and soft top?

#9 Jenette

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Posted 30 March 2012 - 09:50 PM

We purchased a Temperpedic mattress. It works better than the traditional pillowtop we had. It maintains its "shape" without having the usual dips. I als have degenerated discs. You cano very comfortably sleep on your back - just put a pillow under your knees. Sometimes rather than rolling over, I just get out of bed and get back in.

#10 Stephen001

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Posted 03 July 2012 - 09:31 PM

Hello,
If you or someone you care about is suffering from Parkinson's Disease insomnia, the first thing to do is consult a doctor. But there are also things you can do from home that can make a difference, at least in the interim.


Thanks

#11 Beau's Mom

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Posted 03 July 2012 - 10:51 PM

I've never noticed this thread before, Very interesting tips and tricks.

We live in a 35 foot motorhome with what is called a queen short mattress (as wide as a queen, but only as long as a double bed). It is well know among RVer's that the beds that come with the units are total crap. As my PD progressed, it became impossible to sleep on a mattress with less than one inch of padding.

We searched the internet for a local company that could replace the dinette cushions (also crap) and discovered that they could make any size bed with any thickness, material, or quality we desired. Their specialty was putting new seats and benches in boats, so you could look under boat remodeling as well as replacement foam RV cushions or mattress manufacturers that sell directly to the public. We tried the beds in their showroom and found one that felt good. Since it was thicker than the original mattress the short queen sheets from Camping World were too small. I discovered a great company online called King Linens and ordered high quality regular queen sheet sets, two of them, for less than $100. They have multiple thread counts, colors, sizes, and the shipping was free.

My feet cramp and are very sensitive, so we found a sheet lift that fits under the mattress between the fitted sheet and the top sheet to keep the sheets away from sensitive areas. The extra length in the full size queen sheet goes over the lift and still tucks in nicely.

Since I have difficulty rolling over and getting out of bed, we went to a local MS used medical supply store and found a handrail that goes on the side of the bed under the mattress. It's probably 18" long and is of huge assistance when moving around or getting out of bed. You can buy the lift and the handrail new from any medical supply store and sometimes at pharmacies like Walgreen's or Rite Aid.

I have a broken left arm just below the shoulder that I strained just as it was almost finished healing. I cannot sleep on my stomach because my neck gets too stiff. The left side is out; the right side is where the PD started and gets painful pretty quickly, so most of the time I sleep on my back. I had been using an ergonomic pillow with one low side and one high side. Just last week my physical therapist told me that with my neck and shoulder dystonia I should use a regular pillow a little on the thin side. I haven't tried that yet, but will soon.

Great topic! Great ideas!
Dianne

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

#12 Natalie

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Posted 05 July 2012 - 04:36 PM

WOW. - this is very interesting. I have been struggling with hip pain and sometimes pain extending all the way down my leg. I posted a couple of weeks ago on the open forum. The interesting thing is, we travel a lot with my 16 year old son who plays travel baseball and I have noticed that I seem to feel some what better after sleeping on a firm hotel mattress. This really helps me in thinking I may be on to something. I am just turning 45 this month and was diaganosed at 39. I am not ready to take sinemet. I would be willing to try just about anything to get rid of this pain. (I feel like I almost have ). But would appreciate any other suggestions. Natalie

#13 mattresstx

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Posted 02 August 2012 - 06:22 AM

Parkinsons pain is quite common in these days...this mainly occurs due to excessive work load and wrong posture of sleeping and sitting. Though its a big problem to tackle, but still you can help yourself a little by changing your mattress and posture of sleeping. Go for a herder mattress that has medicated springs rolled over it. It is specially made for patients and are very relaxing also.

#14 williamg

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Posted 02 August 2012 - 03:52 PM

I have a sleep number bed. I love it. As you all have seen the commercials, it is fully adjustable so the firmness can be changed depending on how you feel that night. They have a new model out now that has a thick memory foam on top. :D I think I need to start saving for that one.
I'm not crazy, I'm just special!! ..No, wait..... Maybe I am Crazy. One second...... I have to talk to myself about this... Hold on......................

#15 coungie

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Posted 04 September 2012 - 08:54 PM

All these ideas sound so wonderful. We are looking into buying a new bed for my dad. The one he currently uses is from when he and my mother were married (over 30 years ago) and he finds that to be comfortable up until now. He had previously purchased a Sealy Pillowtop mattress however he is on the shorter side and had to get a running jump to get on the mattress once we got it home and on their frame. We tried various frames but it was no use, the mattress didn't work out ( I got a new mattress out of the deal :mrgreen: ).

We are now looking for a mattress for my dad who also has hip and back issues, that is comfortable and practical so we don't have to lift him or he has to get a running start. Also one that a spouse can agree on as well.

Thanks!! :cool:

#16 Jenette

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Posted 05 September 2012 - 05:27 AM

Another tip: ask for the lower box spring. They come in two heights and the higher one is what most stores automatically use. The lower box spring is better. Its just right - no need to climb or jump into ned.

#17 Golden01

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Posted 21 April 2013 - 01:32 PM

We are in the market for a new mattress and am looking for ideas. Several of my family members are swearing by the Sleep Number beds. It seems that some patients with PD really like the Tempurpedic mattresses and others do not. Mattress "toppers' have been recommended (our son has a bone condition and we use one on his bed). I think the "memory foam" type top would make it hard for my husband with PD to roll over in bed. We are leaning towards a Seely Beautyrest pillow top (fairly firm) and a new low box springs. Price will likely drive our decision as I think the Sleep number and Tempurpedic may be out of our price range. We are just starting our shopping and look forward to your help and input.

What suggestions or recommendations do you have for us? I'm confident your experiences will help us as we start our shopping!

Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine; Sister and Best Friend from Childhood also have PD


#18 Jenette

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Posted 21 April 2013 - 02:45 PM

We have a temperapedic mattress and its great. What's nice is that with my PD, I'm constantly in and out of bed. The mattress doesn't bounce, therefore I don't disturb my husband. Just remember to get the lower box spring no matter what mattress you decide on

#19 Luthersfaith

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Posted 21 April 2013 - 03:52 PM

We bought a memory foam mattress just like temperapedic, but another brand, ($ less) and we love it. We now think springs are things that only happen once a year.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#20 Delta

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Posted 21 April 2013 - 05:00 PM

We just recently bought a euro firm mattress. You actually have to go to the store and lay on each one. Consumer reports recommended you lay on a mattress at least 15 minutes before you make a purchase.

All 3 types of mattresses are great for different people. I personally hated the temperpedic and the sleep number bed was not that great either. But only you can decide the right mattres for you.

Edited by Delta, 21 April 2013 - 05:03 PM.





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