by Thurza Campbell
As posted to the PLS Friends email support group
I hope some of these ideas will help others of you with bulbar symptoms:
Learn the American Sign Language alphabet, see 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 1/2 inch by 1/2 inch (approx 1 cm x 1 cm ) 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. Braun Hand Grinder and Chopper. 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
1 lb. Raisins
1 lb. Figs
1 c. lemon juice
1 c. brown sugar
4 oz. Pkg Senna Tea
Steep tea 5 minutes in 3 1/2c. boiling 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
Saturday, September 8th, 2012
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.