Pathfinders for Independent Living, Inc 
  • Home
  • About Pathfinders
  • Board of Governors
  • Employees
  • Newsletter
  • Contact Us
  • Information / Referral
  • Independent Living Skills
  • Peer Support
  • Advocacy
  • Events in South East Kentucky
  • Archived Newsletters
  • For Veterans
  • Links to Other Resources
  • In the News

LIFE LINE

Pathfinders for Independent Living Inc is funded by the U.S. Department of Education, Grant #  H132A960003-08, and by the Education and Workforce Development Cabinet of Kentucky, agreement # PON2 531 0800009926.  The opinions expressed in Lifeline are not necessarily those of the U.S. Department of Education or the Workforce Development Cabinet of Kentucky.

Vol XV Issue I        November 2011


I’m Disabled, So What!

Cherie’s last article ended on a hopeful note, but as you will learn, her disabilities were becoming more and more difficult to deal with because they were not easily diagnosable.  This is true more often than individuals with a disability would like for it to be. Remember her daughter had begun to have symptoms also.
    It is unfair for me to have referred to my situation as a nightmare. “With God, all things are possible.”  He has been with me every step of the way.  Without a doubt, He has made my life so much easier even with what has happened and continues to happen in my life.
    Whenever people hear the word “disability” they envision someone who manifests a disability that all can see and identify.  My disabilities don’t “show”!  However, they impact every single thing I undertake to do!  I must plan my day carefully and I need a lot of time to prepare for any activity.  It takes so long to dress to go to church or shopping or anything.  I am weary before I even begin the planned activity.  I am a good planner and so the people I meet don’t realize how much effort I must make just to keep going.  As an example, I make appointments only in the afternoon so I have enough time to get ready.
    New symptoms appear with regularity and then continue to plague me.  Recurring migraine headaches, the inability to sit still, more extreme muscle spasms with greater pain caused me to again call my Neurologist.  Migraine medications never worked for me.  Even at a very young age my Pediatrician said I was an “exception to the rule” in that I didn’t respond to usual drug therapy.   I didn’t react to medications as my doctor would have expected most people to react.  I hadn’t even experienced “normal” symptoms for childhood diseases.
    Previously a friend and I had participated in a year-long study performed at Duke University on a new medication to prevent migraine headaches.  Using the results of this study my doctors were able to devise a combination of medications that helped greatly with my symptoms
    Of course, I continued to develop new troubling symptoms, such as, walking into door jams instead of walking through the open doorway.
    Oh, did I tell you I bruise very easily when I run into table corners, kitchen counters, dressers, etc.  I  trip over objects that aren’t even there.  It is embarrassing doing these things especially when I am in public.  Some people even asked when they have seen the bruises if my husband abused me.  This is not at all true; he helps me in every way he can.
    Let me tell you about an incident that happened to me and it is not an unusual kind of happening.  I went in the grocery store to pick up two items and I stumbled.  While I was trying to maintain my balance and hang on to my purse, my purse caught on an item on a shelf and knocked a whole row of things off the shelf as my feet flew out from under me and I slid half way down the aisle on my back ... leaving a trail of groceries behind me.  Of course, this would be in a part of the store with maximum visibility so everyone had a perfect view of my graceless fall.  Some times I don’t get hurt but I suffer the greatest of embarrassment.  This time all I could do was laugh when help arrived.
    I continue to have new and exciting symptoms.  I have reached for a glass of water and gotten a jerk or tremor causing me to knock the glass over.  Most of these occurrences happen at home, but yes they happen in public frequently... soaking many a restaurant table and floor or my husbands lap.
    My getting ready ritual to go out frequently results in my getting burned by my curling iron.  Sometimes a jerk or tremor causes me to touch the hot curling iron to my face or to grab it on the hot end, instead of the handle, I have even dropped it on my lap (on my bare legs).
    I even have tried to put a log into the fireplace and been burned, once it was a third degree burn.  So what am I to do about putting  casseroles, homemade bread, and other baked goods into the oven without burning my hands or arms?
    The longer my day lasts and the more I try to do and the more tired I become the worse the muscle jerking, cramping and pain becomes in my arms and legs.  Sleep becomes almost impossible as my legs cramp and jerk and the pain makes me want to scream.  So much for sleeping!
    At long last, my Neurologist arranged for an appointment for Nicole (my daughter) and me to go to Mayo Clinic in Rochester, MN, hoping that they could find something that other health professionals might have missed.  My parents made travel plans to be in the area when our plane arrived so they could pick us up at the airport.
    In spite of my best efforts, I couldn’t get a direct flight, and we had to change planes twice.  Each time we only had a few minutes to get from one gate to the next, and often we literally had to run from one place to the next, all the while I needed to try to support Nicole and pull our carryon bags behind us.
    By the time we finally arrived at the gate we were both in tears from the pain, and Nicole could no longer walk.  Not one person from the airlines offered to help or to get one of the carts to help us.  When getting off the last plane I had to literally carry Nicole.  Once off the plane I laid her on the floor.  I then went back on the plane to get our carry on luggage.
    When I placed the luggage beside Nicole she asked if I could get a pillow for her.  There just happened to be a vendor across from the gate selling beautiful stuffed zoo animals.  I went over to purchase one that would make a good pillow for her to place under her head.  He was a beautiful moose and she still has him to this day. He helped make the wait for my parents easier.
    When we saw my parents at the gate we were overjoyed  to see them!  My Dad promptly got an agent to get us a ride in a cart to the baggage claim area.  My parents took care of the luggage, and then Daddy went to bring the car around while Mom waited with us.
    We drove from the airport to the clinic, not a comfortable ride.  After checking into the hotel, we were very tired but we all were able to get a good nights sleep.  Following breakfast the next morning with high hopes for a complete diagnose which will bring greater relief we went to the Clinic and registered to start the process for our medical evaluation.
    The attention and help provided at the clinic was a vivid contrast from our treatment by most of the airline personnel.

INDEPENDENT LIVING IN KY

    The state of Kentucky receives federal funding to support  independent living (IL).  The state must designate a state office (DSU) to perform required functions for the state under the State Independent Living Services (SILS) and for Centers for Independent Living (CIL) as required to receive the federal funding.
    The Designated State Unit (DSU) is the Office of Vocational Rehabilitation.  The Office for the Blind (OFB) is a separate State agency which offers services for individuals who are blind and is part of the program to provide IL services to individuals who have disabilities.
    The DSU is charged with developing a State Independent Living Plan (SILP).  The State Independent Living Council (SILC) and the OFB must sign this document along with the DSU when it is developed every three years.  The present plan was developed in 2010.             
    The plan details who is authorized to provide which services, oversight and manage finances made available under the SILP.  The plan must ensure appropriate planning, financial support and other assistance to address, on a statewide basis, the needs in the state for: independent living services, a statewide network of centers and foster a working relationship between CILs and Voc. Rehab.
    The DSU and the SILC must
hold public meetings when a new plan is under development or whenever a revision to an approved plan is sought.
    The state must provide funds for IL services in accordance with an IL plan mutually agreed upon by the individual with significant disabilities and a service provider.   Funding is also to be provided when the individual signs a waiver.  Service providers need to provide materials and programs in a format which is accessible.
    Service providers must not discriminate against anyone based on membership in any protected class, such as age, race, etc.  The provider must also serve anyone who is present in the state, even if he is not a resident  who is otherwise eligible for services.
    Centers are required to have staff who are knowledgeable about providing IL services and who are able to communicate with individuals who need alternative modes of communication.  Centers must provide staff development programs which insure that all staff are knowledgable and in agreement with and which reflect IL philosophy.  Centers must take affirmative action to employ and advance qualified individuals with disabilities.
    All recipients of financial assistance under parts B and C of Title VII of the Rehab. Act must comply with all applicable laws which set out program requirements insuring that program needs are met, and laws and accounting requirements must be in place to ensure proper disbursement and accounting of all funds.  Centers need to have available for inspection financial information showing total costs and which demonstrate each project costs, as well as, which funding source covers which project costs.  The records must be adequate to facilitate an effective audit, examination or compliance reviews.
    Centers must have in place procedures which protect the confidentiality of all personal information of staff and consumers.
    This article simply presents an overview of what is necessary  in a state plan.  Details of the specifics of the Kentucky plan will be presented in a later article.
             
RED MARBLES

I was at the corner grocery store buying some early potatoes... I noticed a small boy, delicate of bone and feature, ragged but clean, hungrily appraising a basket of freshly picked green peas.

I paid for my potatoes but was also drawn to the display of fresh green peas. I am a pushover for creamed peas and new potatoes.
Pondering the peas, I couldn't help overhearing the conversation between Mr. Miller (the store owner) and the ragged boy next to me.

'Hello Barry, how are you today?'

'H'lo, Mr. Miller. Fine, thank ya. Jus' admirin' them peas. They sure look good.'
       
'They are good, Barry. How's your
Ma?'
'Fine. Gittin' stronger all the time.'
'Good. Anything I can help you with?'
'No, Sir. Just admirin' them peas.'
'Would you like to take some home?' asked Mr. Miller.

'No, Sir. Got nuthin' to pay for 'em
 with.'
'Well, what have you to trade me for some of those peas?'
'All I got's my prize marble here.'
'Is that right? Let me see it', said Miller.
'Here 'tis. She's a dandy.'

'I can see that. Hmm mmm, only thing is this one is blue and I sort of go for red. Do you have a red one like this at home?'  the store owner
asked.
'Not exactly but almost.'
'Tell you what. Take this sack of peas home with you and next trip this way let me look at that red marble'. Mr. Miller told the boy.
'Sure will. Thanks Mr. Miller.'

Mrs. Miller, who had been standing nearby, came over to help me.

With a smile she said, 'There are two other boys like him in our community, all three are in very poor circumstances.  Jim just loves to bargain with them for peas, apples, tomatoes, or whatever.  When they come back with their red marbles, and they always do, he decides he doesn't like red after all and he sends them home with a bag of produce for a green marble or an orange one, when they come on their next trip to the store.'

I left the store smiling to myself, impressed with this man. A short time later I moved to Colorado , but I never forgot the story of this man, the boys, and their bartering for marbles.
Several years went by, each more rapid than the previous one. Just recently I had occasion to visit some old friends in that Idaho community and while I was there learned that Mr. Miller had just died.  His visitation was scheduled for that evening and knowing my friends wanted to go, I agreed to accompany them.  Upon arrival at the mortuary we fell into line to meet the relatives of the deceased and to offer whatever words of comfort we could.

Ahead of us in line were three young men.  One was in an army uniform and the other two wore nice haircuts, dark suits and white shirts...all very professional looking.  They approached Mrs. Miller, standing composed and smiling by her husband's casket.

Each of the young men hugged her, kissed her on the cheek, spoke briefly with her and moved on to the casket.  Her misty light blue eyes followed them as, one by one; each young man stopped briefly and placed his own warm hand over the cold pale hand in the casket.  Each left the mortuary awkwardly, wiping his eyes.

Our turn came to meet Mrs. Miller. I told her who I was and reminded her of the story from those many years ago and what she had told me about her husband's bartering for marbles.  With her eyes glistening, she took my hand and led me to the casket.

'Those three young men who just left were the boys I told you about.

They just told me how they appreciated the things Jim 'traded' them.  Now, at last, when Jim could not change his mind about color or size....they came to pay their debt.'

'We've never had a great deal of the wealth of this world,' she confided, 'but right now, Jim would consider himself the richest man in Idaho ..'

With loving gentleness she lifted the lifeless fingers of her deceased husband... Resting underneath were three exquisite shining red marbles.
The Moral:
We will not be remembered by our words, but by our kind deeds. Life is not measured by the breaths we take, but by the moments that take our breath away.                           
Today I wish you a day of ordinary miracles ~
A fresh pot of coffee you didn't make yourself...
An unexpected phone call from an old friend...
Green traffic lights on your way to work...
The fastest line at the grocery store...
A good sing-along song on the radio...
Your keys found right where you left them.
May we all share lots of Red Marbles in our lives.

   Just for Fun

1.    In 1987 the U.S. ranked 20th worldwide in life expectancy for women.  Where does the U.S. rank today?
2.    In 1932 American artist,_________ created his first hanging mobiles with movable elements.
3.    Mount Everest was first climbed to its top by Edmund Hillary and his guide,Tenzing Norkay in what year?
4.    When did it become possible to send a message that circumnavigated the globe?
5.    Where was the setting for the movie “High Noon”?
6.     What are the names of the mice who befriend Cinderella in the movie?
7.    Is the top stripe on the American flag red or white?
8.    Whose picture is on the dime?
9.    In terms of area which is the largest city in the U.S.?
10.    The train, the Harlan County Express, is run by ________.


        Fruit Cakes and Steamed Puddings

    In the heading Steamed is the operative word.  The following is a story where in I tell on myself.  Some years ago during a time when my husband and I struggled to meet our bills, as many young people did then and still do, I had planned to bake fruitcakes for friends for Christmas.  I thought it would cost me less than buying other presents.
    I had a fruit cake recipe from the Courier-Journal food section which looked very good and doable.  I carefully made a list of ingredients I needed and purchased them.  Mixing the ingredients was easy.
    The instructions directed me to grease brown paper and line the sides and bottom of my pans with it.  The directions said to bake the cake for 6 hours at 225 degrees.  I was a young cook and I believed everything a published recipe stated.  Therefore, I followed the directions completely.
    I placed three cakes in the oven about 2:30 p.m.  When my husband came home about 6:30 p.m. for supper and asked what was burning I told him it was the brown paper that smelled that way.  I also told him not to worry because the cakes had another 2 hours to bake.  He suggested I look in on them.  But as I said I am a hardheaded person and said I would do that in maybe another hour.
    Well, being as hardheaded as I am and being as confident in the written word as I am, I did not look until the entire time called for had passed.
    Guess what!  Those cakes were black on the outside and dark brown and dried out to within one half inch of the center.
    No wonder my husband thought something was burning.  I waited until about mid-night and then I took those bricks out to the garbage can.  Well, naturally garbage day had been that day and so nothing else was in the can.  When those cakes hit the bottom of the can, the noise was frightening.
    I was devastated!  I could not bring myself to try again.  I had no idea what had gone wrong.  I did want to know, so I called the Courier-Journal and asked for the food section.  A lady spoke with me and told me that there had been a misprint and that I should have baked the cakes for only about 2 hours at 350 degrees.  (It was so long ago I really do not remember the exact temp and time so do not use those directions.)
    A few days later I was in the grocery and I met an older woman whom I knew to be a good cook and I related to her my experience.  She told me she never baked a fruit cake or pudding but that she streamed them.  I gathered my courage and tried again.  Her method worked.
    Her instructions were to put the cakes in greased pans and place them in my turkey roaster on a lift so they would not sit in the water placed in the bottom of the pan.  She told me I could layer the cakes in the pans if I had another lift.  She told me to loosely cover the cakes with wax paper so condensed vapor would not fall on the top of the cakes and then to cover the pan with the roaster lid.
    I was told to bring the water to the point of steaming then check it after about 45 minutes.  Be VERY careful when dealing with steam.  Raise the lid so the steam will flow away from you and use good hot pads.  If the cakes look
fully risen and firm on top remove from your steamer pot and set out.
    You can brush white corn syrup on top and decorate with nuts and candied fruits.  Place the cake in the oven at 350 degrees for about 15 minutes.  Remove cakes and cool.  If you want to do so pour a bit of whiskey on the cake and wrap with cheesecloth and store in a tin.

_________________________________________________________________________________________________________________
 
Answers To Just For Fun


1.    35th.  We are dying younger and it is believed to be due primarily to obesity, effects of smoking since WWII and poverty.

2.    Alexander Calder.

3.    1953.

4.    1903.

5.    Hadleyville

6.    Gus and Jag.

7.    Red.

8.    Roosevelt.

9.    Juneau, Alaska, 3108 square miles.

10.  The Harlan Rotary Club.
ARABIAN NIGHT PUDDING
This is a favorite Christmas dessert at our house.

1 ½ c graham cracker crumbs
3/4 c chopped pecans
1 lb. Chopped pitted dates
2 T flour
1 t salt
2 T sugar
2 t baking powder
1 beaten egg
1 c milk
1 t  vanilla

Mix all ingredients together.  Follow the instruction above for steaming.  Steam for 1 hour and 15 minutes.  This does not need to be decorated just serve it with REAL whipped cream.       
 

Create a free website with Weebly