What you need to know!

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What you need to know!

Postby Mitch70 » Sat Apr 28, 2012 2:31 am

If you have someone who've you been caring for who has PSP, then you'll probably also know just how frustrating it is when it comes to getting the information that you need when you need it. Doctors helped my mom very little if any, but the nurse always seemed to be giving me the information that I needed. I wanted to set up a topic for anyone who needs help or who many be able to help others with issues that they may not have ever even considered. A list below are things that I've dealt with that you really need to know.

(Bed sores)

Bed sores occur when the person is no longer able to adjust themselves when they are either sleeping or sitting in a chair for an extended period of time without adjustment every so often. What my doctor failed to mention is that there are a couple of ways you can prevent this from becoming a serious problem. First off, you need to get a pressure alternating air mattress for their bed. This device will lay over their current mattress and will redistribute the pressure on their backs every five minutes. What's happening to their body is that the bone against the muscle causes the blood to be cut off from that section creating a sore. You can spend thousands of dollars on these devices, but I was able to find a really cheap one that did a great job on http://www.Amazon.com. It cost me under $100 and really helped. Also, the person with PSP will most likely have bed wetting problems which will only irritate the bed sore. If this happens and the person does not want a catheter, you can always use an overnight pad to protect the urine from hitting the bed sore. Second, for the chair, you'll need to get a convoluted foam chair pad. This will help with the elongated sitting periods. Finally, if they are getting bed sores it also can be caused because they are not getting enough protein in their diet. What happens (and I didn't realize this till later) is that the person who has PSP has trouble swallowing their food, so you'll notice that they more often prefer not to eat. My mom was going down to liquid drinks to get her food and eventually she didn't even want that. It wasn't till later that I realized that it was her fear of choking that made her stop eating. So please, don't let this happen to your love one. I was never informed by any doctors to look for these signs, nor how I should deal with it. My mom suffered in ways that she never should have just because no doctor took the time to explain these things.


I brought this up in bed sores, but I'll say this again. The person with PSP may not want to get a feeding tube. Some doctors will make it sound like it's not a big deal, but the reality is that it is a major procedure, and if the person with PSP doesn't want it, they'll literally rip it out of their stomach, because the disease causes the person to act in a compulsive manner. If they do have the tube and begin to pull at it, you'll need to do what you can to keep it covered.

If the patient has no feeding tube or doesn't want one, then you'll have to go down to yogurts and then eventually nothing. My mom passed away this way, because in her prime health directive she said no feeding tube. Ultimately, she no longer could take food or water and died within two weeks. I'd highly recommend you find out what the patient wants on the earlier stages of the disease and then every so often check to see if they've changed their mind.


Do yourself a big favor and get yourself a bidet. The new ones are completely electronic and will do everything for you. Eventually I had to run the controls for my mom because she instantly would hit the dry button. I bought my first bidet online for $500 and then a couple years later got a lesser one for $200.

(Statin Drugs)

I've been reading up on a few sites that have been showing a link between statin drugs and neural degenerative disease. The problem with statins is that it not only removes the bad cholesterol, but also the good ones which in turn make the brain more vulnerable to brain disease.

I'll add any new thing that I can think of, but I'd really appreciate anyone else to give others input on this too.
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Re: What you need to know!

Postby Robin » Sat Apr 28, 2012 10:12 am

These are good tips. Thanks Mitch.
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Re: What you need to know!

Postby twinsplusone » Sun Oct 21, 2012 4:42 pm

One thing we have been using for my mom is the new goodnights bed pads from the infants section of the store. They are ment for kids who bed wet but they are super absorbent like a diaper and have sticky corners to stick to the bed sheets...
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