Bellow are some items and techniques that have been helpful to my mother while dealing with the symptoms of PSP:
1. Television Prism Spectacles:
One of the most common symptoms of PSP is the vision problems called gaze palsy. With gaze palsy there is an impaired ability to voluntarily move the eyes up or down. The effect is so noticeable that PSP is often referred to as the 'can't look up and can't look down' disease. Because of this it can interfere with eating. They can't see that they are dropping food when they eat, or see the food to get it onto eating utensils. They may experience difficulty with descending a flight of stairs, or trip over low objects.
One thing that we found helpful for eating are the TV prism spectacles. These glasses redirect your line of sight 90 degrees down. My mother wears these whenever she eats. They take some getting used to, but mom loves these glasses now. The lenses on these lightweight glasses are prisms that change the normal line of sight without any distortion. she wears them over her prescription glasses with no trouble. These can be purchased online at a number or retailers. Just run a search and you'll find them.
Just don't wear them while walking, or any activity.
2. Handicap Ramp / Setup:
We installed a handicap ramp onto the back deck. Moms living space has a door accessing the deck. The ramp helps a great deal. With mom's inability to look down stairs are always a dangerous chore.
When arranging furniture and other items at home, make sure low items are out of the way. With the vision issues anything waist level and lower becomes a trip hazard. The floor must be clear of any items. even a throw rug can be a hazard.
3. Binder/Folder:
As this disease progresses, the doctors appointments increase in number and frequency, and moms ability to communicate decreases. I compiled a binder, to carry all mom's medical documents. This has proven to be very useful time and time again. I used a zippered leather 3 ring binder. There are 5 tabbed sections, Medical history and upcoming appointments, Drug and supplement information, Medical contacts, Activities (Therapy to be done at home for example), and Legal documents, (Power of attorney, etc.). I use the business card holders for medical insurance cards, IDs, appointment cards and doctors business cards. There is a notepad in the back that's already 3 hole punched so the notes can be added to the binder easily. If you decide to make a medical binder I would suggest getting a zippered binder. This keeps everything secured, especially when you are helping a loved one transfer from a vehicle to an appointment. The legal documents have been a necessity with the privacy acts. Many times I need to speak for mom and sign papers, and medical offices will not allow this without the power of attorney. The binder is a great way to keep all her medical info organized and in one place.
4. Lift Chair:
Another common issue with PSP is vertigo with retropulsion (a tenancy to fall backward). This symptom is severe with my mother, and she almost always straightens her body while trying to sit, causing her to fall or plop down into chairs. She also has a great deal of trouble trying to stand. The lift chair helps immensely. These can be a little pricy. We searched around on Craigslist and found one that was almost new for a fraction of the cost of a new one.
5. Pager System:
 |
| Pager System |
|
If your loved one lives with you as my mother does, you will need a method of communication. It's impossible to have someone in the room with her at all times, so she needs to be able to alert someone if she needs help. We found an inexpensive wireless pager system. It comes with 2 Nurse Call Pendants. The button is user friendly and requires
little pressure to push. A lanyard is enclosed so it can be worn like a
pendant, and a slide mount with sticky adhesive lets you attach the mount someplace
easily accessible. It comes with 1 Caregiver Pager. It's a beeper style clip-on receiver that only weighs
4.1 oz. with batteries installed, so it is easy to wear on your
waistband. The pager also has a stand on the back for tabletop use. It can
receive a signal up to 150feet. The Pager/Receiver has two alert settings, a 30 second long siren and a 3
second long doorbell-like chime. Both alerts are very loud and can be
heard from quite a distance. It also has a small LED on the front that flashes while alerting. We have one set up as a pendant, and the other mounted to the railing on mom's bed. This is probably the most used piece of equipment that we have.
6. Velcro on the Remote:
Mom as with many PSP patients can not look down. She can watch TV but has trouble with the remote.We came up with a very simple solution for the remote control. Moms favorite channel is 7. We
put a piece of Velcro on the channel 7 button. Whenever she losses her
place she feels for the Velcro and presses the 7 button. Then if she
wants to watch another channel, she feels for the channel up/down button
and counts to the channel she wants. So far this has worked really
well.
7. Baby Monitor with Video:
Even with the pager system, mom often gets up to try to do things on her own. As much as I would love to let her, it just isn't safe for her. We bought a video monitor. The camera is mounted to the wall. They have a base and can be placed on any flat surface. We can hear her very well. The night vision comes in handy when mom try's to get out of bed in the middle of the night. Just her attempting to get out of bed is enough noise to wake you. I check the video feed day and night just to check on her. Ours has a talk feature that allows you to press a button and talk to her through the camera. I also use this often to tell mom to wait a minute, and I will be in there to help her. These are a little pricey. There are a number of manufacturers that sell these.
8. Talking Watch:
My wife gets credit for this one. I don't know if this is common with PSP patients or just with my mother, but she has no concept of time. Five minutes seems like an hour to her. She was constantly asking what the time was. She would often get upset. We tried large face clocks, but she still could not see them. My wife found her a talking watch. You simply press the button on the side and it speaks the time in a soft female voice. It also has a setting that will tell you the time at the top of every hour. Mom uses this watch very often. You can find them online and at Radio Shack.
Under construction. Check back soon and I'll have more added.
