Hi everyone, I don't post often but love reading everyone's input.
We're now in our 5th year since diagnosis, and I thought I'd share a few helpful tips I've discovered recently.
1. If you use a letter board to help your 'patient' communicate, don't necessarily default to a QWERTY layout, as our speech therapist did. J was a 1 finger typer, and I thought he struggled to find the letters. So we tried an ABC layout and it was much better!
2. J has started writing letters on my hand as a quick and easy way to communicate. I hold my hand open in front of him, and he spells out words by writing the letters on my palm. A Y for yes and an N for no. Seems to be easier for him than thumbs up/thumbs down. He manages to communicate fairly complex wishes.
3. Get an electric toothbrush and a waterpick. This looks like an electric toothbrush but squirts water out of a thin nozzle. Great to clean between his teeth now that he can no longer floss. And I can't floss his teeth for him! It's also great for rinsing out his mouth after brushing his teeth. We used a syringe to inject water into his mouth after he could no longer such through a straw, but this is better. I add a half a capful of mouthwash into the little water tank of the waterpick too, and that has also helped with his mouth hygiene. The waterpick does shoot water out at quite a force so be careful. It can be a bit messy so we do this in the shower, if possible, as J likes to shower 2x a day.
Hope these little tips help. Love and light to all of you.
S
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Sawa
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Great idea. I have printed out pictures for my mum and had them laminated (toilet, glass of water cold, hot etc) Sometimes she says one thing but wants something else so this has really helped especially as this illness progresses.
The VA gave my husband a voice box (iPad) that he types the word then the iPad speaks it. It has been so helpful during those times when he was really hurting and needed something specific. I like the writing in the palm of your hand idea.
My grandkids have learned to sign while young, so I have learn it. My husband knows a few signs from it, and he uses them. There are kid videos out on the computer you can look at; Signing Time with Alex and Leah. My grand kids started as early as one year old from watching this.
I also like the idea of the water pic. We have problems with brushing his teeth too.
We've developed our own signs over time which we still use, but he's become slower and we only have signs for the most basic things. We have a tablet too, but have found that typing or even selecting pictures too difficult. J has double vision so struggles to select the right thing. He also tends to slide his finger rather than alight on an exact spot, which can be a bit disastrous on a touchscreen.
I miss the communication the most, more than the other abilities he's lost. Whatever you can find that works for you, is fantastic. Hope they keep working for the two of you for a long time!
I also think the loss of communication is the worst. Chris is deteriorating and I know its going to be worse but I find it hard not to get angry with him, even though I know it isn't his fault.
Thank you for the tips, Steve who has CBD is getting a screen in the next few weeks via the ACE company the idea is he looks at the letter for a time and it types it so he dosnt have to type with his finger its tracks his eye movements, I'm hoping it will improve communication. I will also try the water pic.
Our Speech Therapist is trialling something similar for J. It's a bit hit and miss at the moment, and it's quite expensive, so I'm not sure if we should get one for home. There are so many items we've bought that either don't help, or only do so for a short time.
I'd be very interested in your piece of equipment and how it goes. Please post an update when you have a chance.
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Caring for a PSP patient.
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