Limb Girdle Muscular Dystrophy

For the past 15 years or so, I have been suffering with limb girdle muscular dystrophy (LGMD) which has slowing become worse.  It is a genetic disease that runs in my Moore family tree primarily involving those muscles at the junction of my limbs and trunk, such as my low back muscles, hips, upper legs, and shoulders.

Fortunately, it did not start until after age 50 and has been slowly progressive.  Ambulation is now becoming more of a problem, and I have begun relying on a walker for balance and using my arm strength.  My walking distance is also limited by my shortness of breath, a holdover from my pulmonary emboli.

Driving is still possible however, because my lower legs and arms are still strong, so I can steer, accelerate, and brake without difficulty.  My Mitsubishi Endeavor SUV is a big help because it has a high center of gravity, and the seats are at the perfect level that are even with my backside for sitting down and getting out of the vehicle.

The longest ongoing problem has been arising from chairs and sofas, which are usually too low for my weak muscles.  Fortunately my bed happens to be very high above the floor, so it is not a challenge.  My favorite leather arm chair in the living room is a Bob Timberlake "Gentleman's Chair" which I have elevated on four inch blocks (bed risers/lifters).  For cooking, I have an armless drafting chair in the kitchen which is on casters, so that I can scoot around from the refrigerator to the counters and stove easily.  It has a hydrolic lift post that elevates it nicely.

For the past 10 years, I have been using an "Old Dollar" leather office chair in my small office at the back of my house.  It is so old that the hydrolic post would not go high enough and I kept adding cushions to the seat for height.  Though, it has been so comfortable and still looks good, it just had to be replaced with a new office chair that is more practical.

I have been shopping at Big & Tall Clothing stores for years, so imagine my surprise when Office Depot advertised a "Big and Tall" leather office chair.  I went into the store for a test drive, and discovered its hydrolic post rises to a very good height, and the seat is wider and deeper than most other office chairs.  It is even rated for 500 pounds!  It was on sale for $150 off the list price at $250, plus I could spend an extra $8 dollars to have them assemble it.  I hate assembling anything, and the reviews said it took two people and was very difficult to assemble because the pieces were so heavy.  So now, I am comfortable at my computers again.

Big & Tall Office Chair!
(Carpet is beige -- don't know where the green came from.)

For more information on LGMD, click on this link:
http://mda.org/disease/limb-girdle-muscular-dystrophy

TMI QUESTIONS: SNACK TIME

SNACK TIME

1. Do you prefer salty or sweet?Actually, I have cravings for both.  Love salted peanuts and dark chocolate.  But I need to stay away from both because the salt leads to edema in my legs, and sweet is a no-no for my diabetes.

2. What was your favorite snack as a kid?

 Sour pickles.  I love sour pickles, which goes back to my paper route days as a teenager. There was a hot dog stand located where I picked up my papers every afternoon. They sold these giant sour pickles out of a jar for 15 cents. Every day I bought one and slowly sucked on it and ate it as I delivered my papers.

3. What is your favorite snack now?Sour pickles. At my local Harris-Teeter, they sell large whole Boar's Head sour pickles out of a jar in the deli section for 99 cents each. I usually buy 6 each week, and enjoy one in the evening before bed time. A couple years ago they sold Dietz and Watson large sour pickles out of a "barrel" which I preferred over the Boar's Head.

Cheese, especially Jarlsberg.

4. Healthy snacks are....?

Still not healthy, but healthier are 40% reduced fat Cape Cod Potato chips and Seneca apple and sweet potato chips.

   

5. Milk and what kind of cookies? Do you dunk?

I don’t eat cookies and drink milk.  The only thing I’ve ever dunked is a donut in coffee.

   

Krispy Kreme only, never  Dunkin' Donuts!

6. How do you eat Oreos?

Absolutely HATE Oreos!

7. What is your favorite movie snack?

Popcorn, especially Cape Cod Sea Salt popcorn.

8. Cake or pie?

Lemon chess and pecan pies are my favorite.  Also like coconut cake.

9. Ready Whip or Cool Whip?

Neither.  For those calories, it must be real whipped cream.

10. Potato Chips or Pretzels or Cheetos?

See #4.

Cape Cod 40% reduced fat potato chips.

Seneca Apple and Sweet Potato Chips.

11. Favorite kind of ice-cream - flavor and brand?

Harris-Teeter Premium Summer Peach.  Real chunks of peaches and none of those strange additives like guar gum!

12. Most unusual food you eat as a snack?

Sunflower kernels!

The Fōth (Fourth, 4th, ¼)

My maternal grandfather, William [Uncle Billy] Phillip Moore died in August, 1925 leaving a 70 acre farm behind with no house as the log cabin had recently burned down. His family consisted of his widow, Rosa Pearce Moore, and five children, aged 15 to 24, who lived with the nearby relatives, especially Uncle Charlie and Uncle Sam.

Uncle Billy and Rosa - my grandparents
(This portrait was photographed circa 1900 and was not discovered until the 1970s by my mother in a small closet under the stairs!  She surmised that the portrait was kept hidden, because it would have been considered much too ostentatious during the depression!)

To replace the log cabin, a four room house with attic and full front porch were built mainly with lumber sawn from the 70 acres.  The windows, doors, and hardware were purchased from Roxboro Lumber Company.  This is still stamped on some of the unpainted wood doors yet today.  Because of the fire, a separate kitchen building stood behind on the side south of the house.  Between the front two rooms was a hallway leading from the front door.   The northeast room was daughter Alma’s bedroom, and the northwest room was the parlor.  Behind these two rooms were two more rooms being my grandmother’s bedroom on the southeast corner, and the dining room on the southwest corner.  This dining room was the largest room in the house and because of its southwest exposure was the warmest and brightest room.  It alone had four windows, while all the other rooms had two windows each.  Not only was dining done in this room, but also it was large enough to be a sitting room as well, probably what today is referred to as a “great room.”  Sometime prior to 1940, Bill added two more rooms across the width of the south side.  Next to the big room was a new kitchen with a walk-in pantry.  Grandmama cooked on a wood stove with an oven and two overhead warming bins. Electricity arrived about 1948 making possible running water from a well, instead of hauling water from the spring.  Bill then built new cabinets with a built-in sink.  The other side of the south addition was a screened in porch.  Again in 1948, the porch was enclosed and a bathroom was added to the southeast corner of the porch.

Three members of the family were left to live on the farm as daughter Lula became a teacher, married and moved to Virginia; Jenny studied nursing, married and move to South Carolina, and Sara studied nursing at Watts Hospital in Durham and married there.  Alma became a teacher and continued to live at home and owned the first car in the family.  Bill spent his time farming the 70 acres.  Grandmama cooked, cleaned and did the household work.  She would spend many hours in the dining room, reading and doing handiwork.

Exactly how my grandfather’s estate was divided up among Grandmama, Alma, and Bill are unclear to me, as I have not found a will.  Both my grandmama and mother have explained the arrangement to me over the years.  Alma, the oldest and unmarried schoolteacher got the house and five acres surrounding it.  Bill, also never married, got the remaining acreage for his farm, where he built a two-story log cabin with large rooms on each level; later, he added two more rooms behind the log cabin.  All of this he built himself, and when he was not farming, he worked as a carpenter.  There were many other buildings on the farm including a two-story pack house with full basement, stables, chicken house, tobacco curing barns (two very old made with logs), and corn crib.

Pack House (left) and Bill's House (right)

So, what did Grandmama (the widow) get?  She got the Fōth and a lifetime right to live in the home!  What is a Fōth (pronounced with a long O sound)? Thus, she was to receive one-fourth of the farm’s income from growing tobacco.  After the sale at the warehouse, she was to be given a quarter of the proceeds.  It was sold in multiple bundles on the warehouse floor with lots of separate receipts.  Grandmama was not always sure that she was getting her rightful share, and demanded to see receipts.  Bill was known to spend a buck or two on whiskey and beer!

Why did Rosa even need any money – the Fōth?  Alma went to the A&P for grocery necessities spending her own salary. Despite all the biscuits and cornbread, Alma bought “loaf bread” especially to make tomato sandwiches.  Right there at hand were the dairy cow, and chickens, and a couple of hogs, not to mention the one acre garden in the summer.

Rosa Moore needed money for the following special items:

·       Snuff! 

Yes my grandmama had a nicotine habit and satisfied it with dipping snuff. Her brand of choice was Tube Rose.  She made her own dipping brush from a twig of the black gum tree.  She kept a pint or quart glass jar on the floor beside her chair to spit in.  Sometimes she used a metal tin can instead. Never make the mistake of accidentally kicking over that container!

·     
Saturday Evening Post which she read cover to cover every week when it arrived. The Post introduced me to the art of Norman Rockwell, who drew the most covers.

·       

Progressive Farmer magazine.

·       
Farmers Almanac in which the calendar must be followed! Know when the last frost will occur.  Forecast published in August, 2013, has been remarkably accurate for the 2013-2014 winter!

·   
Coats and Clark thread.  There was always sewing to be done, whether it was mending, crocheting, or a bobbin to be wound.  Four doors away on the corner of my block in Durham, NC was a neighborhood grocery store.  Right at the front next to the cash register was a glass display of threads.  I was usually sent with a color thread to match up.  The thread was wound on wooden spools, which never could be thrown away, because they would be repurposed as pot lid handles!  In the 1940s, feed sacks were indispensable for material for making some clothes, particularly pajamas.  Yes she made my pajamas.  Rosa had an authentic Singer foot paddled sewing machine, which she famously carried out of the burning log cabin home.  My mother had one also in our dining room next to two bright sunny windows.  Grandmama crocheted beautiful colorful edges onto pillow cases and towels for gifts.  She could also make lace – the doilies for the table tops.

·       
Gifts for her grandchildren on special occasions.  When I graduated from high school, she said that she wanted to give me a gift that I could use in college.  So, I chose Merrian-Webster’s Collegiate Edition Dictionary.

·       
Shoes which she bought at Roscoe Griffin in Durham.  She only had one style, which was black leather ankle high lace up.  She never ever wore anything else on her feet.

·       Certain undergarments, most notably a girdle.

One Man PITY PARTY!

Well, I have been rather down and feeling sorry for myself.  Left leg has been terrible with cellulitis/lymphedema.  Admitted to the hospital for eight days, where they investigated more problems with low blood pressure (down to 70/30), shortness of breath (better known as SOB, yea it is a son of a bitch), cardiac arrhythmias, etc.  Worse of all, the muscular dystrophy weakness in my legs has increased making ambulation even more difficult!

So this past Saturday, I held a "pity party" for myself and decided I needed something from my more youthful days to cheer me up.  When I graduated from high school and was attending college, madras clothing was all the rage.  Our high school graduation dance and party was held at the old Washington Duke Hotel in downtown Durham and madras clothing was seen in abundance. Guys wearing madras shorts and/or shirts.  Gals wearing madras shirt-waist dresses.

Madras cotton fabric is woven in Madras, India and is often known as "bleeding madras" because as it is washed, it slowly fades and the colors tend to run together.  When in high school, I had two madras shirts similar to these, especially the yellow one and the other was more green/blue in hue.  So imagine my surprise, when Googling madras, I came across these beautiful shirts for sale at Ralph Lauren in my size!  The yellow shirt was made in India and the red shirt was made nearby in Sri Lanka.

Cheer up, David.  Wearing them and pretending to be in my youth again.

Selfie wearing new Madras shirt!