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Monday, August 19, 2013

That's my dad! Monongah Citizen of the Year!

This year the festival honored four very special individuals who have all demonstrated, through their selfless actions, that which makes our town such a great place to live. Paulah Sloan who is a lifelong citizen of Monongah, coincidentally a daughter and grandaughter of previous honored citizens. She and her husband Dave, have operated family businesses in the town for many years, and in addition to serving the many people who have frequented the businesses with grace and a smile. Paulah has tirelessly devoted countless volunteer hours landscaping and maintaining all the flower gardens around town, helping to keep our town looking beautiful. John Myers, a fine gentleman from Paulah's neighborhood, is a familiar face to all the school children in our town, as he spends countless hours main...taining many of the children's areas, keeping them litter free and safe, such as the bus shelter, the ball park, the playground and the Rails to Trails. You can often find him ensuring the safety of the children who wait at the bus shelter, helping to make their day just a little bit brighter. Two of these very special kids who have benefitted from Mr. Myers' selfless acts, have also served to inspire not only him, but all those who know them. Desiree Parker and Chloe Nickerson truly show us how to accept difficult situations with grace and determination. Both of these girls have been diabetics since early childhood, yet they bear this burden without complaint, but choose to deal with life problems with a sense of responsibility beyond their years, and a smile that brightens the day in our town.See More
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Wednesday, August 14, 2013

This is an interesting site!



Just Ducky

Once upon a time there was a soft fuzzy yellow stuffed duck toy in a toy store in Pennsylvania. The toy store had a long row of bins full of stuffed animals of all kinds; there were dogs and cats, lizards and ostriches, lions and tigers, llamas and elephants, each animal sorted into its own bin with a sign overhead.
Every day children would come to the toy store with their grownups, but although he was often played with, nobody seemed to want a plain yellow duck. One day he was left on the floor by a little boy and the toy store assistant, who was in a hurry to close the store, absent-mindedly stuffed him into the wrong bin while bickering with her boyfriend on her cell phone. After a little early apprehension he settled in and enjoyed visiting with his antipodean neighbors the platypuses, but he couldn’t help feeling a little out of place. After all, he was yellow, not brown. He had wings and only two webbed feet, not four. He had a pointy tail, not a flat one. But they did have beaks and webbed feet in common and they both liked swimming in ponds and eating shellfish and freshwater shrimp, so in the end they found that they had a lot to talk about.
The next day just after the toy store opened a stooped-over little old lady stopped at the platypus bin. She had huge glasses and wiry white hair that stuck out in tufts. She peered up at the sign that said “Platypuses”, and down at the bin. She looked up at the sign again. She looked down at the bin. She couldn’t quite see the brown platypuses against the brown bin, but she could vaguely see the little yellow duck so she picked him out and bought him. She carried him home, wrapped him in festive wrapping paper, put him in a box with some other stuffed animals and some chocolate and other good things, and express mailed them to her granddaughters in Texas for Easter.
He was not very happy in the box with only some stuffed bunnies to talk to, but in no time he arrived at our house. Big Sister, Medium-sized Sister, and Little Sister opened the box in front of the computer as their Grandmother watched and listened over a webcam. Well, Grandmother mostly listened because she was getting old and didn’t see very well any more. Well, truth be known, she mostly talked because she didn’t actually listen very well. Her hearing was excellent,
in fact she often claimed she could hear a pin drop across the room, so Daddy often said she was “hard of listening”, not “hard of hearing”.
Little Sister unwrapped the duck and was entranced! She loved him on sight. “Oh Grandmother!” she cried, “Thank you so much for the duck!”, for she was a polite child. She held the duck up to the web camera gleefully and hugged him so her Grandmother could see how much she loved him.
“Wait a minute, wait a minute”, said Grandmother coldly in a very loud and imperious voice. “It’s not a duck, it’s a platypus.”
“It’s a duck!” insisted Little Sister in a very gay voice. “It’s yellow.”
“It’s a platypus”, snapped Grandmother crossly.
“Look, it has two webbed feet and two wings, and it has the most adorable little duckie tail”, insisted Little Sister in a happy voice.
“I tell you, it’s a platypus!” shouted Grandmother in her no-nonsense voice, frowning severely out of the computer screen.
“Grandmother, it’s a duck! Look!” laughed the little girl, waving it in front of the web camera and laughing.
“It’s a platypus”, said Grandmother testily. “It said so on the sign!”
Daddy laughed so hard that he fell off his chair. He wasn’t sure if it was a Duck Billed Platyduck, a Platypus Billed Duck, or a Duck Billed Duck. Little Sister didn’t care much what he called it. She slept with it anyway.
The first part of this story, about how the duck got put into the platypus bin, is made up but probably ought to be true in any reasonable kind of universe. The rest of the story is true.
It reminds me of how people with MS are often treated. The duck represents a person with MS. The platypuses represent people who don’t have MS. Like the ducks and the platypuses, people with MS have things in common with everybody else but we are different in ways that shouldn’t be overlooked. The Grandmother represents people who refuse acknowledge our duckhood, to see the ways that MS affects our lives, and insist that we are just platypuses.
What people with MS need is not to be overestimated, not to be underestimated, but to be recognized for what we are. We may not have the right number of webbed feet, nor the correct kind of tail, but we need people like the Little Sister who look at us with humor, accept us for what we are, and sleep with us anyway.www.multiplesclerosissucks.me

Tuesday, August 13, 2013

MS is a full time job.

     Today I unofficially started back to school after enjoying a summer at home. I didn't really want to get up and go, but I knew at least that I would only be in the building for an hour or so. Tomorrow is a different story since teachers will attend at least one meeting and then Thursday is a full day of test analyzing and curriculum prep before we can spend Friday in our classrooms doing the really important preparation for our students next week.
     Going to a full-time paid job  is a choice we make in order to secure a comfortable life for our families. Even though it is commitment, there is always the option to play hooky or be irresponsible and just quit, right? Of course, we teachers would never consider that. The point is, we determine our priorities when it comes to employment. Do we prefer food on the table and a solid roof over our heads? That is our choice as responsible occupants of planet earth.
     MS does not necessarily allow flexible priorities. Yesterday I exercised for an hour and enjoyed myself immensely. This morning my feet refused to move in the direction I wanted to go. I could not grip a pen long enough to write out my shopping list and I just knew it wasn't going to be a productive day for. My normal fifteen minute toiletry time extended into approximately 45 minutes, which meant that I wouldn't have time for breakfast if I was to be on time for the orientation program at my school.
     The beauty of today's job, though, was that I didn't need to be there; I just wanted to be there.  I did not, however, want to make a spectacle of myself by tripping up the auditorium steps in front of our visitors; nor was it acceptable to loose bladder control because my legs refused to take me to the rest room on time. These are the full-time concerns of having MS.
     I never stop thinking about my disease. It isn't allowed. I have to be on my  "toes" 24/7, even when they are not physically supporting me.
     I really want to look forward to next week when school gets fully under way, but I am also anxious about my performance. Quit, you say?
     That is actually not an option I am prepared to practice. I like what I do and who I do it with. I just don't like knowing that my options are limited with MS.
     Sure, I can quit my job; but I can never quit MS.
     It is what it is.

Tuesday, August 6, 2013

Because we can...

So, yesterday should have taught me something, right?
Nope...
I woke up slowly this morning but hit the floor running (kind of). My goal today was to wash the windows, clean the drapes, and scrub the blinds. Then there was the task of cleaning the outdoor grill.

And I managed to complete these tasks but with nice little rest periods throughout the day. That is the secret to successful bursts of purpose. If I can just sit down for a spell, drink something refreshing, and collect my thoughts, physical exertion isn't so bad.

21st Century Technology 101

Okay, so I wrote about limitations two days ago and only discovered this morning that my venting was not posted due to "technical difficulties". So, not only is physical activity a daunting task, but 21st century technology can cause us to stumble and fall just as succinctly.

I took a photo with my phone that I want to share as evidence of my summer challenge (the monster flight of steps separating me from my place of work that must be mastered in order to walk to that destination) and for some reason have forgotten how to download it on my computer. I'm just drawing a complete blank and I don't' know whether to blame it on my memory or technology:)

Anyway, I'm sure it will come to me when I least expect it...while in the shower...at 3AM...during a walk...Y'know, sometime when writing it down isn't feasible.

But I did accomplish something today and I want to share it here. I have two book signings coming up and after two years of trying to get some ink time in our local newspaper, I think it might happen.

Here is my press release:

Local author will be at the 2013 Monongah Fest August 17 and from 9:00AM to noon at Life Methodist Church on August 18.
Lisa A. McCombs is a veteran teacher of 30 years and the author of 2012 Readers Favorite award winning Abby, the story of seventh grade Abigail Van Buren Masterson who has attended five schools in seven years before her widowed mother is diagnosed Multiple Sclerosis, forcing Abigail into yet another school in Monongah, West Virginia. Maybe this move will be the last one and Abigail can finally call this place “home”. She gladly embraces the bullying tactics of Head Cheerleader Sheila if that means being embraced by the security of relatives she never knew existed. As her mother’s MS symptoms take on a frightening reality, Abigail turns her own fears into a class research project that helps her realize society’s unfair treatment of individuals with diversities.

Abigail exhibits the vulnerability of youth while writing to her diary, the most constant friend she has ever known, until now.
Praised by the late Dear Abby as “delightful”,  Abby is the first in a trilogy of diary-formatted novels that chronicle Abigail Van Buren Masterson through junior high school and high school. McCombs brings awareness not only to the ramifications of MS but the issues of bullying, family, spiritual awakening, first love, and death.

“This age is the most pivotal time in an individual’s life,” McCombs says of the junior high years. “God doesn’t throw us more than we can catch, but they don’t know that yet.” It is her goal to provide an “easy-read” that lets young people know that they are not alone in their journey.

McCombs will be at the Monongah Fire Department with fellow author Linda Stevenski during the August 17 Monongah Fest and will be signing her books again at Life Methodist Church at 1564 Mary Lou Retton Drive from 9AM to noon on August 18. Abby, Raspberry Beret, and Opening Pandora’s Box:The Conclusion can be found The Artisan’s Shop on Fairmont Avenue, Kerri’s Korner Bookstore in East Fairmont, on Amazon.com and at Barnes and Noble, as well as contacting the author.

Lisa A. McCombs
hummingbirdo2000@yahoo.com
lisa-mccombs.blogspot.com

Monday, August 5, 2013

Know Your Limitations and Learn to Trust That Little Voice

       Have you ever had that feeling that you shouldn't do something even though that something seemed totally innocent and non-threatening? Why don't we listen to that little voice when it whispers in our ear?
      I've learned since my MS diagnosis that listening to that little voice is imperative. So, why, I ask myself don't I always trust my instinct?
     This morning before preparing for church, I decided to make up for my weekend lack of exercise to take a quick stroll around the neighborhood to loosen up the joints. So, walking stick at my side and my favorite walking shoes securely tied, I headed out the door to boost my day. The air was crisp and comfortable. The sun was promising to be present where as the largest part of this summer has been overcast and wet, so I chose to ignore my little voice hinting at impending doom. It was just going to be a small walk; nothing like the challenge of facing the mountain of steps that has become my nemesis this season. I just wanted to breathe and stretch.
     And that's what I did until...the fall.
     I don't know about you, but it seems when I fall there is no warning and no sense of survival until impact. My normal aversion to gravel or loose earth did not apply to this particular fall. The ground was non slick nor was I moving quickly. I just...fell...hard.
     Of course human instinct demands that we check for witnesses before assessing our own personal state of being, so I didn't even look at my injuries before assuring myself that this awkward moment was all my own. Even though I lay prone on the road my first instinct was to safeguard my dignity.
     So, I brushed myself off and forced my drop foot to cooperate for the remaining half a block to my front door. The closer I got  the more aware of the pain in  my left knee I became.
    I hadn't planned on crying or feeling sorry for myself until I saw the blood running (not trickling) down the front of my left and onto my favorite Nike sneakers. The next 20 minutes were spent scrubbing the road dirt out of the wound and carefully removing my white shorts without soiling them with my own blood.
     A warm shower aggravated the injury and my shower turned into a river of red. I know  that I have suffered worse boo-boos as a child, but this was not a bicycle accident or a scrape on the playground. Adults just do not heal as readily as children and sometimes we are  much bigger babies. I tried to keep my whimpers to a minimum as to not alarm my son, but the tears came any way as I again soaked my knee with hydrogen peroxide and Neosporin.
     With a bandaged knee and a long skirt my wound was well hidden (I really did take a chunk out of myself!) and I would be okay.
     If only I had listened to my  little voice when it warned me to skip exercise this morning.
     So, now I am left shaky and sore, with a bloody knee and a reason to spend my Sunday lazy and on the couch. (But I did make it to church:)

Thursday, August 1, 2013

Americans with Disabilities Act 23rd anniversary


Celebrating the ADA


Today, we celebrate the 23rd anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA is landmark civil rights legislation that resulted from the intense and selfless activism of individuals and groups including the National MS Society who fought for their right to receive equal treatment and access. Because of their activism, today, the rights of people with disabilities are protected in several areas including education, employment, public services such as public transportation, public accommodations (restaurants, hotels and retail stores) and telecommunications. Since the ADA’s passage, great strides have been taken to improve the quality of life of people with disabilities and to allow them to more fully participate in and contribute to mainstream society.

Even before I was diagnosed with MS in 1987, I personally witnessed others benefit from this statute. Prior to the ADA, in my role as a health center professor and teacher at the University of Florida, I saw how difficult it was for “students” with disabilities to mainstream in medical training. After the passage of the ADA, other faculty members and I developed teaching and diagnostic aids to help students work hard to completetheir dreams of becoming health professionals. We used translators and transcribers; we developed augmented stethoscopes and other diagnostic aids; and our school upgraded buildings to make them physically accessible with ramps, automatic doors and elevators. In 1986, when I started experiencing symptoms of MS (fatigue, numbness and motor deficiencies), I was able to continue my work as health center professor, teacher and researcher due to accommodations made by my University.

When I partially retired in 2006, I followed my wife and her career to the Washington, D.C., area. It was an ideal choice because of all the great work that had been done locally to enforce the ADA and provide accessibility. Early activists in the area lobbied federal and state agencies and legislatures and protested against inaccessible entities, leading to accommodations that today, permit me and many others with disabilities to have a better quality of life and be productive members of the community.
Using those activists as inspiration, I am proud to call myself an MS activist who participates in the Society’s Virginia Government Relations Committee. I get to work with other MS activists to help Virginia legislators as well as federal law makers understand the needs of the disability community. We visit our local representatives at their homes and also visit their offices in Richmond and on Capitol Hill.

For the last five years, I have been a member of the Washington Metropolitan Area Transit Authority’s (WMATA) Accessibility Advisory Committee. We are a group of people with disabilities from the jurisdictions served by the WMATA--Maryland, D.C., and Virginia--who work with WMATA staff to advise the WMATA Board on issues that directly impact the elderly and disability ridership. We have been successfully involved in making the D.C. metropolitan area bus/rail system more accessible through input on the design of the new 7000 Series Rail cars which will join the fleet in 2014. We have also been active in improving lighting, signage, elevator availability and full implementation of “bumpy domes” (tactile strips) which help guide people who are blind or visually impaired at all rail stations. As new metro lines are developed, we will monitor their development and accessibility as well as new fare gates and fare media. We are working with WMATA and their jurisdictions to improve bus stop accessibility and have been instrumental in transitioning to new contractors for MetroAccess paratransit.

Through my role on WMATA’s Accessibility Advisory Committee, I see that though we have come a long way in making public transportation accessible, there is still work to be done to ensure that all people with disabilities have meaningful access to their communities and are able to live independent, full lives. On this anniversary of the ADA, I am thankful for the groundwork it has laid and am committed to continuing as an MS activist to ensure the ADA’s promise is fulfilled.
Phil

Phil Posner, PhD

Phil is a retired health center professor. He started his career in Brooklyn and worked his way around academia from there to UCSF, Stanford, U. of Fla, Oxford, Auburn and FSU. He currently does part time consulting with Oak Ridge Associated Universities as well as the FDA, DOD and HHS. Phil and his wife live in Virginia where he volunteers with the local MS Society chapter and the regional transit system for accessibility.

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    14 Comments

  • Lexi   Jul 26, 2013 1:27 PM
    What do you when your own family members ignore the illness. Yes, I am walking, but like most my legs hurt 24/7, migraines, tired. Yet, They think nothing of "take me here, take me there" I'm talking about immediate family members. My Father who I loved dearly wants to go to the cemetery everyday where my Mom was buried 5 years ago. My Doctor wrote a note saying she doesn't want me running more than 2-3 days. My Father saw it and said, wow you have a problem. I answered I don't you have a problem. That lasted a week.
  • Joanne   Jul 26, 2013 5:44 PM
    I live in a low income community. I have ms, heart problems and a old heart attack. I would lile to know what I have to due to get a proper small ramp with rails made. My complex will not do a thing to help...they say they have done all they could which is 'NOTHING', I got a estimate from Elder Care for $1,200,00...which is rediculus...they will be charging me to dump my trash in our dumpster...I feel I am being taken advantage of....please help..
  • Kathy Geiger   Jul 26, 2013 4:58 PM
    The ADA accommodations are few at best. I too has MS, PPMS, and I have observed, offices , restaurants, stores, bathrooms, etc., do not have sufficient access for a disabled person. Electric automatic door openers must be a mandatory tool to provide the disabled! Feel free to contact me, if you want additional information.
  • Karon Borkowski   Jul 26, 2013 3:18 PM
    I have had MS for 36 years. In the last few years walking and stairs have 
    become a real challenge. We live in a raised ranch-everything dealing
    with steps-and my husband who I am the caregiver for-uses a walker
    due to two strokes and maybe some small heart attacks. If he has to
    use the steps-I walk ahead or behind depending if its up or down.
    Needless to say life is no longer anything enjoyable. Any help is welcome-we are thinking of selling our house-it is too dangerous for both of us. Thanks for letting me vent.
  • Tina   Jul 26, 2013 2:39 PM
    Dear Mr.Posner,
    It is very refreshing to hear that you can still help with ADA-issues. I am also a health care professional who was diagnosed with ms in 1986. I worked as a RN and nurse educator until forced to retire by hardships of the ms. Thanks to you we can live better! May God give you strength for each day!!
  • Denise Fletcher   Jul 26, 2013 1:45 PM
    I want to still have a purpose. RN had to quit practice 2010 sudden onset Parkinsons. No available positions in my hospital. I am still able to be productive a few hours a week. 
    Live in Tampa. Any ideas that at the same time would help your cause which is now mine.
    8133827120
  • Stan R Nelson   Jul 26, 2013 1:40 PM
    back in 2005-6 I was fired from my job because of MS at that time my condition was not that noticeable I had requested help from you people and was told my case was not important enough and that you write the laws but we needed someone to enforce them I lost a 30000 a year job over this now I barely get by on disability,
  • Tena D.   Jul 26, 2013 1:38 PM
    You guys rule!
  • Kimberly Lorance   Jul 28, 2013 2:51 PM
    Love this story. Thank you for sharing. I am a nurse and deal with my MS on a daily basis. I am 52 years old and had to give up full-time work. Just spent four days in the hospital with exascerbation. Glad to connect with this site.
  • David Oser   Jul 27, 2013 5:44 AM
    Also an MS sufferer...the problem I have with the ADA is that it only affects companies or firms with 15 employees or more. I work for a firm with 10 employees...there is no relief for me under ADA
  • Ross   Jul 26, 2013 11:22 PM
    I am happy that this law has created a passage for many of us with ms. I have personally been a victim to this however, even with this law. Texas state troopers would not allow me to join even after I passed all physical and mental test. It is apparent that even this law does not stop discrimination. I have been in law enforcement for four years now and have not needed any accommodation due to my MS. Too bad this law did not help me as much as I wanted to work for the State of Texas.
  • Avatar
     
    A_J_  Jul 26, 2013 6:18 PM
    Really appreciate all that the ADA has done...still people and places that need to be aware of the simple things that can be done to make mobility issues easier. Thank you.
  • Joanne   Jul 26, 2013 5:45 PM
    I live in a low income community. I have ms, heart problems and a old heart attack. I would lile to know what I have to due to get a proper small ramp with rails made. My complex will not do a thing to help...they say they have done all they could which is 'NOTHING', I got a estimate from Elder Care for $1,200,00...which is rediculus...they will be charging me to dump my trash in our dumpster...I feel I am being taken advantage of....please help..
  • Kees Kuijken-NL   Jul 29, 2013 8:37 AM
    Dear Phil,

    You are doing a good job!
    We are 5 volunteers (retired; outdoor recreation and nature conservation) in Holland and we listen what problems you MS patients and all other disabilities have; we advice State Forest Service and other Nature areas organisations about accessibility (and behaviour); have a public Handbook on our website "nature without borders " 
    (in Dutch only) www.natuurzonderdrempels.nl