Many of you out there suffer from some form of chronic disease. My husband suffers with Oculopharyngeal muscular dystrophy (OPMD), a rare form of Muscular Dystrophy that causes progressive muscle weakness predominantly in the eye (oculo) and throat (pharyngeal) muscles. Patients usually appear healthy before the onset of disease symptoms, typically between the ages of 40 to 60.
https://musculardystrophynews.com/symptoms-of-oculopharyngeal-muscular-dystrophy/?fbclid=IwAR0QsUHZlX00UtR-wkf-GouoLYhEk1bKIeTzpWNysUcLOLPvXRK8ogncNTk
There is more information regarding this disease at:
Here is some information that I have learned through the years. Jacks Mom (Antoinette Rancout) was a French-Canadian descendant. From what I understand, her Dad had droopy eyelids. Most of my mother-in-laws siblings ( there were 10 children) were affected starting with eyelids, trouble swallowing and walking. Some had feeding tubes, throat stretching, some had minor symptoms and others had all three. The disease has been passed down to some of their children who are staring to have difficulty with their eyes, throat and legs. OPMD is genetic.
A few years ago, Jack (my husband) started with droopy eyelids. His eye doctor at the VA Hospital operated on him and after several surgeries, he was seeing double in one eye. Dr. Tien, another eye specialist tried to correct the double vision and found it difficult because he had built up a lot of scar tissue around the lower muscle of his eye. Dr. Tien research this rare disease and found that 3 Sisters from France moved to Canada and brought this gene with them. As they married the gene was passed on to their children and so forth and so on. There are clusters of this rare form of Muscular Dystrophy through out the United States. He still has double vision but is able to overcome it.
Within a few years after the eye surgery Jack started have trouble chocking. He has also adjusted to that situation by eating slowly and avoiding spicy foods. He seems to have the situation under control.
Now he is having trouble walking. His legs are very weak so he has resorted to a walker. Luckily that is working out. We don't know what's to come next but we will be prepared for it because now there is so much information out there.
If anyone reading this has any information regarding this disease, please contact me. I would appreciated any helpful information.
Living with OPMD
Sunday, October 27, 2019
Saturday, August 19, 2017
CAPRESE PORTOBELLO MUSHROOMS:
You will need:
Two large Portobello mushrooms
Fresh sliced tomatoes
1 scallion
Fresh sliced mozzarella
Garlic salt
Italian Seasoning
Olive oil
Balsamic glaze
Cooking spray
Spray bottom of pan with cooking spray. Place the mushrooms and spray them also. Top with tomatoes, seasoning, garlic salt and olive oil. Place sliced mozzarella on top of tomatoes. Sprinkle olive oil and seasoning and top with sliced scallion.
Bake at 375 for about 15 to 20 minutes. Top it off with some Balsamic glaze. Yummy!!!
You will need:
Two large Portobello mushrooms
Fresh sliced tomatoes
1 scallion
Fresh sliced mozzarella
Garlic salt
Italian Seasoning
Olive oil
Balsamic glaze
Cooking spray
Spray bottom of pan with cooking spray. Place the mushrooms and spray them also. Top with tomatoes, seasoning, garlic salt and olive oil. Place sliced mozzarella on top of tomatoes. Sprinkle olive oil and seasoning and top with sliced scallion.
Bake at 375 for about 15 to 20 minutes. Top it off with some Balsamic glaze. Yummy!!!
Monday, July 15, 2013
Chicken Breasts stuffed with Red Roasted Peppers and Shredded Mozzarella
2 chicken breasts
4 slices of roasted peppers
1 clove of garlic - pressed, sliced or diced
salt
McCormick's "Perfect Pinch" Italian Seasoning
1/2 cup of shredded mozzarella
1 package of Steam Fresh Brown Wild Rice w/Broccoli & Carrots
1 package of Asparagus Spears (frozen)
Wash and trim and butterfly chicken breasts.
Place them in foil pan and arrange roasted peppers,
garlic, salt, Italian season and top with mozzarella. Fold over and secure tooth picks.
Sprinkle with Oil and Italian seasons.
Bake at 350 oven for about 45 minutes. Meanwhile, place the frozen Asparagus on cookie sheet and drizzle with oil and your favorite seasoning. About 15 minutes should do it. If you like them crunchy place them under the broiler of a couple of minutes. Just before everything is ready, put the Brown Wild Rice packet in the microwave to cook. It should only take about 4 to 5 minutes.
Arrange the Chicken Breast over the Wild Rice mixture. Cut up a piece of roasted pepper to garnish.
I served this to my Hubby and he gave it a "pass with a push". Anyone that knows hubby will know
that this was a 10 on his scale of 1-10. I hope you like it too!
Buon Appetito!
Sunday, September 30, 2012
MONKEY BREAD
Monkey Bread is a favorite among young and old. I decided to post this recipe given to me by my friend Margo. She has made this so many times for us. My grandchildren love it! You simply pull it apart and eat it!
Here is what you will need:
Grease a tube pan or bundt pan. Preheat oven at 350. Cook for 35 minutes.
3 large Pillsbury Buttermilk Biscuits
1/2 cup of sugar
1 tsp cinnamon
1/2 cup brown sugar
1 stick of butter or margarine.
Combine white sugar and cinnamon in a bowl. Cut the slices in quarters and roll them in the sugar and cinnamon mix. Place them in the pan. After placing all of them in the pan, sprinkle with brown sugar. Cut up the margarine or butter and place it on top.
Bake in a 350 oven for about 35 minutes. Cool for a few minutes and serve. Tastes best when warm.
IF you should have any left over (which I doubt) Place in an air-tight container so it will stay fresh.
Here is what you will need:
Grease a tube pan or bundt pan. Preheat oven at 350. Cook for 35 minutes.
3 large Pillsbury Buttermilk Biscuits
1/2 cup of sugar
1 tsp cinnamon
1/2 cup brown sugar
1 stick of butter or margarine.
Combine white sugar and cinnamon in a bowl. Cut the slices in quarters and roll them in the sugar and cinnamon mix. Place them in the pan. After placing all of them in the pan, sprinkle with brown sugar. Cut up the margarine or butter and place it on top.
Bake in a 350 oven for about 35 minutes. Cool for a few minutes and serve. Tastes best when warm.
IF you should have any left over (which I doubt) Place in an air-tight container so it will stay fresh.
PICKLED BEETS
For the next few posts I will be sharing my Mother-in-laws "canning" recipies. This is one of my Husband's favorites. Here is what you will need:
1/2 bushell of Beets
1 quart of white vinegar
2 cups of sugar
1/2 cup of salt.
Peel Beets and put aside.
Place all ingredients in pan and add enough water to cover the Beets. Bring the mixture to a boil and add Beets. Be sure that the Beets are covered, if they are not, add more water. Let it all boil for about 5 minutes. Meanwhile steam the jars. Pack while everything is hot and keep out of drafts. **you can cut the recipie down for smaller amounts of Beets.
Enjoy!
1/2 bushell of Beets
1 quart of white vinegar
2 cups of sugar
1/2 cup of salt.
Peel Beets and put aside.
Place all ingredients in pan and add enough water to cover the Beets. Bring the mixture to a boil and add Beets. Be sure that the Beets are covered, if they are not, add more water. Let it all boil for about 5 minutes. Meanwhile steam the jars. Pack while everything is hot and keep out of drafts. **you can cut the recipie down for smaller amounts of Beets.
Enjoy!
Sunday, May 27, 2012
Hi, sorry I haven't posted any recipes lately....very busy. I am going to Italy for a family wedding, but I will certainly gather some recipes from my family in Milano and share them with you.
Meanwhile, I have just come across so recipes for preserves that belonged to my mother-in-law, many of you that know me, knew her as Meme.
My very favorite is BREAD AND BUTTER PICKLES. Here is what you will need:
5 medium cucumbers
3 medium onions1/4 cup salt
1 cup white vinegar
1 cup of water
1/2 teaspoon celery seed
1/2 teaspoon mustard seed
3/4 cup sugar
14 teaspoon turmeric
1/ teaspoon ginger
Wash cucumbers and onion then cut into thin slices ( you can use your food processor or veggie slicer)
Combine them with salt and let stand for two hours. Drain. Heat vinegar, water, celery seed, mustard seed, sugar, turmeric and ginger. Bring to a boil. Add cucumbers and onions, bring to a slow boil until tender. Pack in clean jars while still hot. Keep them out of a draft, covered with a towel. Store in cool dry place.
ENJOY!
Meanwhile, I have just come across so recipes for preserves that belonged to my mother-in-law, many of you that know me, knew her as Meme.
My very favorite is BREAD AND BUTTER PICKLES. Here is what you will need:
5 medium cucumbers
3 medium onions1/4 cup salt
1 cup white vinegar
1 cup of water
1/2 teaspoon celery seed
1/2 teaspoon mustard seed
3/4 cup sugar
14 teaspoon turmeric
1/ teaspoon ginger
Wash cucumbers and onion then cut into thin slices ( you can use your food processor or veggie slicer)
Combine them with salt and let stand for two hours. Drain. Heat vinegar, water, celery seed, mustard seed, sugar, turmeric and ginger. Bring to a boil. Add cucumbers and onions, bring to a slow boil until tender. Pack in clean jars while still hot. Keep them out of a draft, covered with a towel. Store in cool dry place.
ENJOY!
Saturday, March 10, 2012
Cod Fish Fillets 9 to 10 points plus meal
Here is a great Weight Watchers dish.
This is what you will need:
2 Cod Fish Fillet (about 6 oz each)
1/4 cup of Panko Italian Seasoned breadcrumbs
1 whole lemon
string beans
almond slivers
roasted peppers
garlic
salad
oil and vinegar
Spray pan with Canola Oil cooking spray. Arrange the Cod. Squeeze 1/2 of the lemon on both fillets and then sprinkle the Panko breadcrumbs. Slice the second 1/2 of the lemon and place them on top of the fish. Bake at 350 oven until the fish is flaky.
Meanwhile to complete your meal, cook string beans according to package directions and add slivered almonds when ready to serve. Toss a salad with olive oil and balsamic vinegar, Roasted pepper with garlic slivers (you do not have to add oil to the roasted peppers you have their own juices, especially if you roast them yourself) and you have a fantastic meal.
Weight Watchers Points Plus: 4 for full fillet, 3 for the breadcrumbs, o string beans, 0 for roasted peppers and 1 for every teaspoon of salad dressing!
Buono appitito!
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