Noble & Greenough School and Dunkin Donuts are the proud co-sponsors of
The 1999 Boston Home Marathon Wheelers
Support our third annual marathon walk on Monday, April 19th by walking with us, by cheering us on the route or by making a pledge of $100 (gold) or $10 (silver) or $1 (bronze) to the Boston Home computer lab for helping our friends acquire computers, speech-recognition and video-conferencing technology. For more information or to pledge, send e-mail to bergen@nobles.edu
The person behind the Dunkin Donuts connection is Kristin Stasiowski, a college student at Georgetown (e-mail: stasiowk@gusun.georgetown.edu)
clickable movies
To all the generous donors out there in cyber-space (bronze, silver or gold) we thank you all in your OLYMPIC support of us!
Our current total is $2,062 in base ten (I believe, not base two) but even more important than the money was the excitement this past Monday when about 25 of us walked to the finish line with the crowd cheering GO LINDA, GO JANICE, GO DIANE, GO FRED, GO COLLEEN and GO MICHELLE. Last year in Marathon 98, it was just 5 of us walking. This year, it was as if we were a "small town" walking down Beacon Street together in support of MS and the Boston Home computer lab. I am sure that there are small towns in Indiana (not French Lick of course) that have fewer people! In case you missed it, we got publicity (although inaccurate) on page F7 of the Monday marathon section of the Boston Globe Monday 4/20.
What was so amazing was that a spectator came by afterwards at 3PM to chat with all of us. She gave us this direct quote which I taped: I was there when you made your turn at the corner by the Hynes auditorium and you were running alongside yelling "root for Janice." I was screaming "root for Janice." The people in my immediate area were also shouting. We were applauding you guys!
What follows is a summary from various PUSHERS and WHEELERS of their take on the day. You can see pictures of the day on www.summercore.com by clicking where it says Boston Home. Once again thank you ALL for your OLYMPIC support.
-- Steve Bergen 4/21/99 --
Some quotes from various "pushers" and "wheelers"
I believe we had 19 pushers
NINE of the pushers were Nobles Faculty Member
Sarah Snyder-fac, English
Nina DeSimone-fac, Spanish
Ellie Newman-fac, Computer
George Blake-fac, Latin
Jenny Carlson-fac, English and Middle School Head
Fred Sculco-fac, Science
Courtney Monnich-fac, Spanish
Kate Boyle-fac, English
Steve Bergen-fac, Computer
FIVE of the pushers were Nobles Students
Chrissie Long-02
Aidan Donahue-00
Stephen Hickey-00
Heather Vincent-04
Sarah Swett-01
TWO of the pushers were friends or relatives of Nobles faculty
Mardi Newman
Jean Pietraszek
TWO of the pushers were from the Boston Home
Jeff
Faith
Diane Lemay-vis writes:
I WANT TO THANK EVERYONE WHO HAS SENT IN DONATIONS. THE FACULTY, PARENTS, STUDENTS,TEACHERS & OTHERS.
Diane Lemay-vis writes:
1- THE BOSTON HOME HAS BEEN A GOD SENT TO ME BECAUSE WHEN UPON ENTERING IWAS ON THE PROTECTIVE WITNESS PROGRAM WITH THE ASST. ATTY. GENERAL OFFICE BECAUSE MY PCA AT HOME DID NOT CARE FOR ME PROPERLY SO THANKS TO THE [SOCIAL WORKER LUCILLE HARRATSIS] I WAS ABLE TO GO TO COURT AND STAND UP FOR MY RIGHTS AS AN INDIVIDUAL...
2- THE MS STARTED AFFECTING ME IN MY MID-TO-LATE-TWENTIES, JUST ABOUT THE SAME TIME MY SON MARC BECAME ANGRY WITH MYSELF FOR PLACING HIM IN FOSTER CARE , BUT MOSTLY HIS FEARS AND ANGER WAS LINKED TO AN ILLNESS THAT SCARED THE LIVING ''HECK''
OUT OF HIM FOR FEAR HE'D NEVER SEE ME AGAIN,BECAUSE MS DOES NOT HAVE A CURE YET?
EVEN THOUGH MS MAY NOT BE A ''KILLER'' PER SE, ANOTHER ILLNESS CAN GET INTO OUR IMMUNE SYSTEM AND IF ANY PERSON DOES NOT HAVE ENOUGH ANTIBODIES TO COUNTERACT SUCH AN ILLNESS LIKE: ''FLU/PNEUMONIA'', THEN SAID PERSON CAN DIE.
3-YOU THE NOBLES COMMUNITY HAVE BROUGHT A NEW WORLD OF ENJOYMENT NOT JUST TO,MOI, BUT TO EVERY ONE ESPECIALLY NOW THAT WE HAVE''DRAGON DICTATE'', I HAVE SEEN MORE RESIDENTS BEING TAUGHT TO USE IT AND IT'S BECOMING QUITE EFFICIENT IN MANY WAYS, THAT GETTING ANOTHER WOULD BE 'SUPER'.
4-THE PERSON IN MY LIFE WHO HAS GIVEN ME ''COURAGE, AND FORTITUDE '' TO KEEP ON MOVING FORWARD AND NOT BACKWARD IS MY AUNT LAURA LEMAY, SHE WORKED INTHE ''PENTAGON BUILDING'', IN WASHINGTON, D.C. ,SHE ALWAYS TOLD ME AS A CHILD AND AS AN ADULT ''A GRADUATION PAPER DOESN'T MEAN DIDLY SQUAT''.
JUST BE PROUD OF WHO YOU ARE AND YOU'LL GO FAR...
MY SON HAS MADE ME REAL PROUD, NOT JUST FOR OVERCOMING HIS ANXIETY OF THE FEAR OF LOSING ME TO MS BUT'CAUSE HE BECAME A LEVEL- HEADED YOUNG BUSINESS MAN, HUSBAND AND NOW FATHER...
HE WAS A DISC JOCKEY IN FALL RIVER , IT WAS CALLED ''TEEN TALK'' A HIGH SCHOOL SPORTS SHOW.
SINCE THEN, HE'S BROADENED HIS HORIZONS WHERE HE NOW RESIDES HE RUNS
''THE LOCAL MUSIC SHOWCASE''...
Richard Kaplan-vis writes:
I would like to thank you and those from Nobles for helping sent up the computer system for us here at the Home. I appreciate the use of E- Mail as I can hear from relatives and friends who are usually too lazy to call or write.
Marc Lemay
The value of the Boston Home to me is how it has affected my mom, Diane. When she first became a resident of the Boston Home, she was confused and lonely. The staff and residents made sure that she got involved with all the different events that take place at the Home. Now, you can't stop her...and neither can MS.
MS affected me when I was a young child...five or six years old...not directly per se, but through my mom. Because of MS, my mom made the decision to place me into foster care...a decision at one time I hated my mother, and MS for. But, as time went on, I began to realize why she made that decision. In the long run, it was in my best interest, despite some shortcomings in the foster care system. Her decision made me the person I am today.
Keep up the outstanding work! I know through talking with my mom that the folks at Nobles bring smiles to the faces of the residents at the Boston Home. Many of the patients, including my mom, look forward to the times when Steve and the gang visit the Home.
Did you really have to give my mom an e-mail address? (Just kidding!) The internet has opened a whole new world for my mom. Being involved with the Internet as a business, I now have one more thing to talk about with my mom. We communicate more often, and sometimes it seems like Mom just wants to say a quick hello or send along a joke or two to help make my day. That is a great feeling.
As odd as this may sound...I think in the long run MS has brought my mom and I closer. No one knows the feeling of being "abandoned" by their mom at such a young age. Back then, I didn't know it would eventually be for my own good. With my mom having MS, I was forced to learn more about the impairment...not disease....that has affected more than just one life. I was forced to put my own fears aside about MS and try to learn not only more about it, but to learn how my mom is coping with her impairment.
I say impairment only because disease sounds terminal, so permanant. Anyone who has visited the Boston Home knows that while many patients are impaired by MS, they are not letting it affect them. Granted, their motor skills are slower...their speach slurred, but they are still making a go of it. That is a credit to The Boston Home, the residents, and the folks at Nobles who so greatfully give of their time and energies.
Diane Lemay-vis writes
MY NAME IS DIANE AND YES I''LL BE ONE OF THE BOSTON HOME WHEELERS... I'M VERY EXCITED ALSO,NERVOUS 'CAUSE WATCHING IT ON T.V. IS ONE THING BUT GETTING OUT AND PARTICIPATING IS AND WILL BE A BRAND NEW ADVENTURE: FOR ONE RESIDENT IT'LL BE HER SECOND TIME -LINDA STRANIERI, FOR 5 OF US IT'LL BE OUR FIRST : FRED HOLWAY, COLLEEN POWERS, JANICE KUSHNER, MICHELLE HURLEY, AND MYSELF DIANE LEMAY...
THANKS TO THE CO-OPERATION OF MR. BERGEN, KRISTIN STASIOWSKI, DUNKIN' DONUTS, AND PHYSIO-THERAPIT EXTRODINAIRE FAITH,AND TO OUR CEO MARVA,THE VOLUNTEERS FROM OUR HOME WHO'LL BE ASSISTING GETTING US UP AND READY FOR THE DAY OF THE RACE.
YES, THE REST OF THE RESIDENTS ARE JUST AS DELIGHTED AND THE FAMILIES AND NURSES ARE DONATING MONEY...
DIANE :)
no one yet
alan washburn, friend of Duncan Morrison
If you have never met Duncan, you would be in for a treat. He is very articulate, and possess a keen mind, which is only surpassed by his sense of humor. I am also told by
his mother, that he has concerns about any expense for sending E-mail or accessing the Internet. If that could be explained to him, I would appreciate it. Please let me know how you make out.
colleeen powers writes:
How much money needs to be donated for the purchase of an additional DragonDictate machine? Perhaps some of the more avid users would be interested in obtaining more computer power. It seems that the Boston Home is not just a "rest" home, people are vibrantntly interested in a more "involved" life.
There seem to be so many people "turned on" by the aspect of really communicating with the "outside", that I think we've created a new monster! (Just joking)
Realistically, it has opened up new avenues for everyone--for me, I can't type, never could--and for others who have a more serious problem than I, those who can't speak clearly enough for the "human" ear, but they can communicate via the computer.
The computer has added so much!
sometimes it is difficult to properly enunciate a particularly difficult word to pronounce, but luckily there's a back door! I was not the best English student, but I did work hard at it when I had to.
I think that the DragonDictate would give kids that extra unfair advantage against the teachers, because at least their compositions would be legible!
I copied down a rather lengthy article from Michelle, and it really surprised me, because I had previously thought that we all had somewhat similar experiences. What I discovered through reading, and re reading that composition, was a sorely needed wake up call! It is as follows:
Here is my latest example of advocating for another resident who cannot use his or her voice to make his/her needs known. It opened my eyes to another world.
Don Olivier
In Praise of the Personal Computer
The work that the Nobles community has been doing to help the Boston Home acquire computers and learn to use them could hardly have been better directed. Our residents have disabilities and needs that are very diverse, and only the most versatile device could address more than a few of them. A small dedicated computer is probably the next best thing to a human being in that respect. It's a measure of that versatility that at the Home right now computers are serving the needs of several residents who are unable to speak, and also of others (like me) who can't do much else.
I admit I'm an extreme case, having been involved with computers since the Bad Old Days when they were huge, expensive, and unbearably technical and ugly, but it wouldn't be going too far to say that for me, my computer is a valued companion-- at least, that it provides the same kind of companionship that a notebook and pencil provide for an isolated writer. And the day is rapidly approaching when we can hope for a relationship with our PC like the character in Thomas Pynchon's novel:
As she reached toward the power button, she said good night to the machine. ``Why good night yourself, gentle User'', it replied, ``and may your sleep be in every way untroubled''.
From Michele Hurley spoken on Dragon Dictate by Colleen Powers: My Experience With Lupus
My name is Michelle Hurley. I am 29 years old, and I'd like to tell you my story about lupus. The story begins when I was 25 years old. I hadn't been feeling like myself for about 6 months. The symptoms I had made me feel like I had arthritis. I went to a local emergency room. They couldn't find anything wrong with me at the hospital, so they sent me home. I continued to feel lousy so I went to see a Doctor at the clinic where my sister worked. He saw me and suggested that I had Lupus. He referred me to a specialist. Between the time I saw that Doctor and got to the specialist, I developed a rash. From what I remember, when I saw the specialist she said, "Yep, it's Lupus". I had a lot of blood work done and was put on prednisone.
Not too long after this, I developed a high fever and went back to see the specialist. Because the fever was so high, the Doctor thought I should stay in the hospital. I was checked into the hospital and stayed there for 2 days. I guess I wasn't doing that great. My sister didn't want me in that hospital so she tried to get me transferred to a hospital in Boston. I don't really know what happened, but I guess my sister mia tried to get a Doctor who was an expert in Lupus. She finally got in touch with one and he agreed to see me and okayed the transfer. I don't remember the actual transfer from one hospital to another. I asked one of my sisters, she told me what happened.
On the morning of my transfer, my sisters found me in a catatonic state. They made an emergency call to my Doctor who initiated emergency care before I was transported ambulatory to the hospital in Boston. When I arrived there, I was in the emergency room for eight hours before being admitted to the floor. That next day I had a stroke. The next morning I had another stroke which led to a coma. I was in the intensive care unit for a while. I was in a coma for 7 weeks.
The stroke was called a bilateral stroke( Medically Speaking, the Strokes Involved the Basal Ganglia and Thalamic and Internal Capsules with Involvement of the Right Caudate Nucleus) Which Has Left Me Partially Paralyzed. I Stayed at the Acute Care Hospital for 4 Months, Then Was Transferred to the Rehabilitation Facility(4/ 22/ 88) Where I Am Still a Patient
All of this happened rather quickly. I found out I had Lupus at the beginning of December 1987 and I had the strokes that the end of the same month. At the age of 25, I was a typical, normal girl, until all of this happened. I was working, going to the beach, had my own apartment--everything was great, at least I thought so anyway. Until I found out I had Lupus. I knew a little about it ( Lupus) or thought so anyway. The Main Thing Was No More Sun. I Wasn't the Least Bit Nervous When the Doctor Suggested It Might Be Lupus. Little Did I Know That I Would Be Sitting in a Wheelchair Telling My Story.
When I Arrived at the Rehabilitation Hospital I'll Admit I Was a Little Nervous, but Not That Much. My Strokes Affected the Part of My Brain Which Decides Whether or Not I'll Laugh or Cry. Well I Cried and Cried I Guess It Was for a Good Four Months Which Was Lousy Because It Affected My Therapy. I Would Cry for No Apparent Reason, Which I'm Sure Frustrated the Therapists, As It Did Me. Today I Feel As Though I Have It under Control Most of the Time.
The Strokes Not Only Affected My Crying, They Left Me Paralyzed. I Mentioned before that I am partially paralyzed. But, when I came to this rehabilitation center I couldn't move at all. Thanks to the therapists and a lot of my own hard work, I can move today. The left side of my body was more affected by the strokes than the right side. Most of the return movement that I have is on the right side. I can't move my left side on my own at all. I must say that a lot of the movement that is back in my hand is because of a surgeon. When I first met him my arms were in the fetal position with the elbows bent and my hands clenched up tight against my chest. Thanks to him I'm able to move my right hand without any problem. The last three fingers on my right hand are a little ( they don't bend at the first knuckle), but I can use my hand to do almost anything. My left hand was done also, but for hygiene purposes, not for function ( movement) which is alright for now. I'm learning to live with it which I must say is the hardest thing to do. The same Doctor that operated on my hand is going to do the same thing with my left foot which means my foot will be straight instead of being curled down ( which is called foot drop).
The strokes also affected my speech. I have a profound dysarthria. This means that I have problems coordinating my breathing, turning my voice on and off, and pronouncing my words. The muscles involved in talking are very weak. The only time I can turn my voice on is when I laugh or cry. This dysarthria means I can't talk, it does not mean that I cannot communicate. I owe a lot to my speech therapist who showed me that there are other ways to express how I am feeling or to tell people what I want.
Looking back, I'd have to say I've made progress. At first I was using a letter board which was on an easel because of the contractures in my right hand. The way my hand was before my operation I wasn't able to point to any of the letters properly. Then I went to a regular alphabet board, placed flat on my lap tray, which was ok but very limited because of what you could say. The person I was talking to had to stand right next to you and say the letters out loud so I could be sure they were getting the correct message. It was also a very slow means of communication. Next I used a Sears Computmate, it is like a small typewriter with a screen going across the top, it holds about 30 letters. The screen is small--it is only five inches long and 1 inch high. Because of this, anyone that I was talking to had to be standing right next to me. The only difference from the letter board was that the person standing next to me did not have to read the letters out loud because they were displayed on a screen. Another disadvantage was that there wasn't a voice output. This was very important to someone who can't talk or yell out because I wasn't able to yell to the nurse when I needed something or if I was suddenly feeling sick. The next thing I tried was a word processor. I really liked it because the screen was much bigger and if I wanted to tell someone something they didn't have to be right beside me. It had a memory and I could save messages to give to people when I saw them during the day.
What I would really like is a system with a voice. The frustrating part is that I have tried a couple of voice output systems and was able to operate them all. my speech/pathologist and I have decided which system would be the best for me. However, getting the system funded is turning out to be a major problem. The main reason I would like to have a voice output system is because, it is so frustrating not being able to yell out "Hey" or something like that when you want something. I definitely don't want to live in this rehab hospital all of my life. If I had a voice output system, I could possibly direct personal care attendants and live in a handicapped accessible apartment. I could talk to my nieces and nephews who aren't old enough to read, or I could make phone calls to set up my own appointments with doctors and other people I need to talk to,besides the fact that it would nice to talk to old friends again. Yes, it sure would be nice to talk to old friends again.
Diane Lemay-vis writes:
What happens to MS families
Women who are afflicted with the impairment of MS forget for the moment how it can also create havoc amongst families and children. My son for instance was not only angry at me but at MS because he had no idea as to what was happening, same with my brother and his family.
How do they fight a “Mysterious Symptom” known as
Multiple Sclerosis.
When my son was 8 years old I had to place him in Foster Care because I needed to be hospitalized to find out what was happening with me. In the meantime, my son was going through anxiety and despair for he did not have any choice at that time to speak for himself. Upon finding out the diagnosis from Mass. General Hospital, I had to enter an Adult Foster Care program till they could find me an appropriate housing unit for the disabled and elderly.
My son and I did keep in contact with each other but he still did not feel secure enough to talk with me about my impairment. Once I returned to Fall River I found my old grammar school was set up as handicap accessible I applied for an apartment and was approved. My son paid me visits as often as he could. While he was in Foster Care and going to Durfee High School he became a disc--jockey at the local radio station which covered High School sports. It was called Teen Talk. Since, then he has gone on to a different field of endeavors such as "graphic design for web site, and working for the local T. V. Station where he lives, he also works from his home doing different jobs. I am very proud to call him my son his name is Marc Lemay. He has found that living without his mother he had to reach down deep inside and find his strength to carry on without me by his side I believe that God gave him the courage and strength to move forward in life.
Just as my Aunt Laura Lemay told me not only as a young child but as an adult she said "always remember God is with you where ever you go." She had a way of giving me courage to believe in my self and also that I had a great mind and someday it would help take me to places I have never been before either in body or spirit. What I believe she was saying, is to never forget who we are but put our best foot forward no matter what the outcome may bring. Since, I' ve come to the Boston Home I have found new experiences and adventures thanks to the faculty, residents, and the volunteers who have donated the computers so I and all the residents may enjoy searching Internet and communicating with their families on email.
My aunt has told me that since my being here I have now a chance of pursuing a new wave of short stories on the computer.
Just think if I would still be in Fall River, I would probably have bed sores all over my bottom and my P. C. A., would still be mistreating me in a fashion that no one would care to imagine. I thank the Social worker Lucille for encouraging me to go into the courtroom and face that Assistant who did not care for me properly. I was under the protective service of the Assistant District Attorney Office for abused persons. My son never knew this, but he will now know and I hope he understands why I kept this from him all this time, even my brother never knew I had this much fortitude and stamina. Again, I wish to thank the nursing staff for being there for me when I needed them.
My son Marc is not only an excellent and sufficient young man but he is a superb husband and a terrific Dad.