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I hope some of these ideas will help others of you with bulbar
symptoms:
- Learn the American Sign Language alphabet, see
http://en.wikipedia.org/wiki/American_Sign_Language_alphabet. Your caregiver and
close family and friends will need to learn it too. As your speech
diminishes, certain sounds are hardest for others to understand. Jim
and I have found that often hand spelling one word makes a sentence
clear. Now that I use a computer to "talk" I still use hand spelling
often, as in many places I can't get in a position to use the
computer. It's also fun with grandkids to "talk" across a room! "g"
was the first sound to go.
- Make plans through your neurologist to get an Rx for a voiced
computer before you are desperate. My local ALS chapter pointed me the
right direction. The rehab specialist wrote the request to the
insurance company. A voiced computer does not make communicating
perfect, as you learn that most people are not "active listeners".
However, mine is my lifeline which keeps me from being "locked in" and
lets me continue my design business.
- Buy a Waterpik toothbrush for brushing your teeth. Since food doesn't move
around in your mouth properly, much of your meal ends up between your
teeth. Since spitting and even brushing are difficult, the Waterpik
toothbrush
with a rinse mixed into the water keeps your mouth as clean as
possible.
- Cut your food, or have some kind caregiver cut up everything into
very small pieces – about ½"x ½" at the most. This size can be
swallowed easily, especially with the help of applesauce, mashed
potatoes, oatmeal, au gratin sauces, etc.
- Give up lettuce. I've found it sticks to the roof of my mouth. For
those B vitamins you need, drink V-8.
- Buy a small electric grinder/whisk. I bought a 200 watt Braun
device which is wonderful.
http://www.yourdelight.com/braun_mixers.htm. It's called a Hand
Grinder and Chopper. I refer to my pureed steak with mushrooms, "Zen
steak". Why? Because I get the essence of whatever food I grind – the
taste! I also use the whisk attachment for beating eggs ( a tip for
those whose hands don't do what you need them to do.)
- Drink from wide mouthed cups and glasses. Best shape is with a
flare out. In a restaurant, request whatever drink be put in an old
fashioned glass.
- Tuck your chin when you swallow. Try turning your head to one
side. This helps, too.
- I've found that Bounty paper towels are my best friend. They do
not disintegrate like tissues do, leaving specs on your lips. I buy
the rolls of half sheets, and keep them with me at all times. Since I
can't keep my lips closed when eating, I've found that a neatly folded
paper towel pressed against my lips when I eat helps quite a bit to
have food or drink go where you want it rather than into your lap or
down your front.
- Participating in table conversations at holidays or any time is
problematic. It's hard to adjust to being a listener when I used to
babble incessantly while devouring a huge meal. This second year with
no speech is in some ways easier. I guess I'm adjusting better to my
role. I have some fun cryptic comments programmed into my computer
which are fun to use. Remember, no one has ever learned anything while
talking. . . hmmmmmmmmmm!
- The meds for saliva reduction help some, but cause constipation.
They do make your mouth dry while drooling – charming! The
anti-constipation paste is a mainstay of my diet.
Anti-Constipation Fruit Paste, from Bobbi Woodward, PLS
1 lb. Prunes
1lb. Raisins
1 lb. Figs
1 c. lemon juice
1 c. brown sugar
4 oz. Pkg Senna Tea
Steep tea 5 minutes in 3 ½c. boiing water. Strain to 2 c. Add fruit
and boil 5 minutes on stove top or microwave. Add sugar and lemon
juice. Puree in food processor. Add more tea if needed. Freeze. Take
1–2 T. per day
- If anyone has a tip on how to acquire unlimited patience, please
let me know!
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