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MS MuSings Monthly Online Magazine by and for those with MS, Multiple Sclerosis Issue 119, August 2009
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Tables of Contents Other Monthly Please Visit
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Playing this page: Wind Beneath My Wings This is Page 5 Click Name of the person you'd like to see
Click the name of the writer you'd like to see!
Needless to say, I love the MuSings. Not just because you
will print my article but because I have been reading it for some time and gives
one hope and expression.
Lance with wife, Patty. Hello, My name is Lance K Jeffrey. About 12 year ago, I lost feelings in my legs. I went into the hospital, and stayed a week. They did a spinal tap on me and other tests and I was told that a virus was found. Went home, felt better and never thought another thing about it. My wife, and myself took a job working on 6000 arced exotic game Ranch, and I spent a lot of my time working outside. Taking care of the 4 acre Manicured lawn, before the guest would arrive, and than would spend the rest of my time inside cooking exotic meals with my wife. That's when the fatigue, and double vision started. After lots of visits, and finally a visit to a Neurologists, and another MRI, we were told in Aug 1998 that I had M.S. I did Private Investigation work for over 15 years prior to the Ranch. My wife Patty, and I have 3 beautiful children, two sons and a daughter. We take life one day at a time. One thing we do have is LOVE, and there is no amount of money in this world that can ever buy that. I, myself, love to Play the Fiddle and Guitar and write poetry. The poetry helps me be happy, by sharing my deepest feelings with others who are going through the same things that I experience. Reach Lance by email to comment: lkjpaj@yahoo.com
Hi, my name is Joanne Marsh. I am 37 years old, married to a wonderful man, Jim. I have two awesome kids, Hillary 16 and Taylor 13. I live on a small island in Newfoundland, Canada. I practiced cosmetology for ten years. I owned and operated a small Hair Boutique until my MS diagnosis in 1998. Because of the physical and mental demands on me I was no longer capable of running a proficient business. Since that time, I have put all my energy into being a good mom and wife. I am a Christian and regularly attend The Salvation Army. I am fond of music so I sing and play a little guitar. I am also very fond of writing. With the obvious challenges surrounding MS, I have been afforded ample time to cultivate my writing interests. It's funny you know, as a high school student, I was inclined to further my education in Literature and Language. Due to the lengthily college program I reneged on that decision. Now as I have been forced to leave my occupation, I am able to work on that goal. In 2000 I had my first book published – A Child of The King. It’s an spiritual/inspirational write about me, my life and my MS diagnosis. I’ve had a second book published – Coffee Sweeteners. This book is a collection of short inspirational anecdotes. There are excerpts and information about both on my website - http://www.geocities.com/glendajojo/index.html. I am currently working on my third book and hoping to see it published before the end of 2007. I was introduced to Musings by Darin, who is a writer here. I met him at Jooly's Joint where I have made some fantastic friends. Most people from JJ's would know me as Jojo. Writing for Musings has given me the opportunity to express myself and reach out to others who are hurting. Since my books were published I have been given many opportunities to speak and share with various groups. I’ve had several articles published online and in other places such as a magazine. Presently I am freelance writing for an online research company. I’ve had many opportunities to travel since my diagnosis. I’ve met some wonderful people who also have MS. I’ve made some terrific life-long friends. So, as you can see, Multiple Sclerosis hasn't really gotten the best of me yet. In some ways, I count it as a blessing. I look forward to writing for Musings. I am trusting that all who read my work might be inspired and comforted. Keep in mind that I am just another person just like you and am really nothing phenomenal. Just like all you gifted people that write for Musings, I feel blessed to be able to share a small part of me. Feel free to email me at:
I MOVED TO FLORIDA 20 YEARS AGO, APRIL 15, 1986.....WOW, IT DOESN'T SEEM THAT LONG AGO. IT HAS BEEN QUITE A "RIDE"...I HAVE BEEN A WIDOW FOR THREE YEARS. WITH NO FAMILY CLOSE TO ME IT IS RATHER LONELY AT TIMES. BUT, I HAVE MY MS FRIENDS, MY CYBER FRIENDS AND MY FRIENDS HERE IN BRADENTON. FRIENDS ARE WONDERFUL, AREN'T THEY? I HAD FOUR CHILDREN, THREE BOYS AND A GIRL WITH MY FIRST HUSBAND. MY ELDEST SON PASSED AWAY IN '79. TWO OF MY SONS LIVE IN WASHINGTON AND MY DAUGHTER IN DENVER, CO. I VERY SELDOM SEE THEM...I HAVE FIVE GRAND CHILDREN. I DO A LOT OF WRITING AND I AM WORKING ON A SERIES OF SHORT STORIES SHARING MEMORIES I HAVE HAD IN MY LIFE WHICH ARE NUMEROUS AND INTERESTING. I HAVE HAD THE PLEASURE OF LIVING MANY PLACES IN THIS GREAT COUNTRY OF OURS AND PARTICIPATED IN COMMUNITY THEATER FOR YEARS WHICH WAS WONDERFUL.... MS MUSINGS IS A WONDERFUL MAGAZINE FOR EVERYONE...NOT JUST THOSE WITH MS.....CAR, WHO FOUNDED THE MAGAZINE IS A GENIUS AND HAS DONE AN OUTSTANDING JOB AND GIVEN SO MANY PEOPLE AN OUTLET TO EXPRESS THEMSELVES. THAT IN AND OF ITSELF IS THERAPY IN THE HIGHEST FORM. I KNOW I AM GRATEFUL. CAROL HAZARD......."CJ" Carol Hazard CJH19@aol.com
I live in Lethbridge, Alberta, Canada with my wife and three boys (ages 22, 20 and 15). I've had M.S. since 1986 and was diagnosed in 1991. I left work on a disability pension in 1996 and have been unable to work since that time. Up to that point I had been a rehabilitation professional, and had obtained accreditation and certification as a Canadian Rehabilitation Counselor. Since being on Copaxone for 2 and 1/2 years, I am finally able to have enough energy to enjoy the next biggest love of my life: music. I have been playing and teaching music for over 30 years. I play keyboards and guitar in a local band, and back up a gal who had a #2 hit in Europe. Incidentally, I had the honor and privilege of playing in Europe in Feb. of this year backing up country indie artists. I've also had poetry published in numerous publications and received a second place standing in one competition. To sum up, I have tried not to let MS control my life. Some of my greatest personal accomplishments have come after my diagnosis. It proved to me that despite my disability, I can still contribute and achieve goals.
David and wife, Sandy Introduction: Born 1952 in Liverpool, England, I moved to N.Z. in 1961 with my family and permanently settled on Auckland’s North Shore. Educated at Rangitoto College, I left there in 1968 with School Certificate and University Entrance accredited, to join an insurance company. Shortly afterwards I joined a local Ford dealership where I remained for 11 years, rising to Office Manager. I married during this period and in the mid 1970’s I first noticed what I was later to realise were my earliest symptoms of Multiple Sclerosis. I did not receive my MS diagnosis until 1982 during my 5 year term as Office Manager for a family owned group of vehicle service centres. My next job, as assistant to the accountant at a plastic injection moulding company, took me through the following 11 years until I left to live in Florida. Two years later I was back on the North Shore where I live independently, with some personal assistance, with my wife of 1 year, Sandy, who also is PwMS. MS Society Involvement: I joined the North Shore MS Society in 1984 and was elected onto their committee in 1985. I have remained on the committee, with the exception of the 1996/7 and 1997/8 terms when I was living in Florida, since that time, during which I had two terms as Vice-President and three terms as President. With the support of committee, I established a support group for ‘newly diagnosed and working people with MS and their partners’ During 1994/5 I was a Board Member of the MS Candy Project, a nationwide fundraising initiative. Since my return to NZ, I have been editor of the North Shore MS newsletter and have been a sometime writer for MSMusings, an internet magazine for PwMS by PwMS produced in America. In 1999 I helped establish a self-help men’s mutual support group, predominantly attended by PwMS who had met at other functions but who needed the support of a peer group. All this involvement stems from a desire to help those in a similar situation and to guide others through the challenges of MS as it progresses, all from a position of intimate knowledge of the condition. While living in Florida in 1996/7, I joined the Tampa Chapter of the National Multiple Sclerosis Society and attended all the meetings of the St. Petersburg MS Support Group, where I was able to participate in many interesting exchanges of information. Community Involvement: In 1972 I was actively involved in establishing the East Coast Bays Citroën Car Club, now known as North Harbour Citroën Car Club. During my involvement since then, I have served various terms as Secretary, Treasurer, Club Captain, President and Newsletter Editor and have also been involved with the organization of several N.Z. National Rallies of Citroen Owners. I am presently a Life Member in recognition of past services. During the latter part of 1997 I was asked to consider the position of Secretary for disAbility Information North Shore Inc. (DINS), a position that I accepted at their 1998 AGM and which I still hold. In 1999 I received a Community Recognition certificate at the North Shore Community Organisations & Services Volunteers Dinner for this service. At the DINS 2001 AGM I also accepted the role of Treasurer. Since 1989 I have attended Auckland University of Technology as a model for the students training as Physiotherapists. I see this is a two-way transfer of knowledge and benefits. The students learn from my knowledge of MS and active participation in their training, and I benefit from the exercise routines that they carry out on me. For three years I have been registered with Auckland University Medical School as a volunteer for study as a person with a chronic illness living in the community. Several times a year I am interviewed by either second year nursing students or 4/5th year medical students. I enjoy the opportunity to pass on both knowledge of MS and experiences I have had with health professionals over the years. Always having been fond of gardening, I joined the St. Petersburg Garden Club in Florida to learn how to meet the challenges of successfully growing anything in such extreme temperature and 100% sand. After a short while I was co-opted onto their Grounds Committee in charge of their propagating area. Travel with M.S.: In 1984, my wife, then, and I decided to take extended leave and travel extensively throughout Europe and the U.K. Only two years after my diagnosis and not needing any mobility aids, we considered that such a trip would be quite manageable. However, fatigue took its toll and I spent three weeks in hospital in Interlaken, Switzerland, recovering from double pneumonia. The interesting aspect of that stay was that none of the resident staff had ever encountered MS before, and so were very interested in me and my condition - probably my first experience of educating others in MS. My wife worked in the travel industry and so we traveled abroad frequently, quickly learning the best ways to make the journeys less physically taxing, and the options available to those traveling with impairments. By 1990 I was using a cane full time and a wheelchair as needed. In 1995 we traveled extensively in Florida and then took a three week cruise from Miami through the Caribbean, Panama Canal, Costa Rica, Mexico, California and Vancouver. By 1997, when I was living in Florida, I was using an electric scooter fulltime but still we managed to cruise the Western Caribbean, Guatemala, Mexico and the Gulf. On both these cruises, and when traveling in general, people were always interested in my condition and marveled at my determination to lead a fulfilling life. Coping Strategies: My wife and I live in our own home, adapted to our needs. We have wheelchair access into the home, fully adapted kitchen and bathroom, and a large bedroom complete with electric beds and a hoist for me. I receive personal care morning and night, and have people managing our housework, lawns and gardens. I prepare all meals for ourselves and we attend to our own shopping, using our scooters, and are able to access many services this way. Mostly a well cultivated sense of humour in all things, an awareness of each others condition, a very good support network including the MS Society, caregivers, service providers, family and friends, and a sense of worth within the wider community, gets us by daily. Motivation: The desire to be of assistance to others wherever possible, regardless of their condition, is my strongest motivational driving force.
Ricochet, Writer Debbie (Cox) Bollinger
I was born in 1967 and raised in Central Virginia, to a very loving family. My parents have both gone home to be with Our Lord and I miss them dearly. But they instilled in me the strength and wisdom to be my own person, respect others, and embrace the day, my loved ones, and my friends. Before my mother's passing, she gave me the nickname of "Ricochet". She said it was because, no matter what the circumstances in my life, I have always had, and will always have, the ability and desire to bounce back. She knew me better than I will ever know myself and I know that she will always be right here in my heart and by my side, as my guiding light and guardian angel. I have 2 beautiful children, Dustin and Chelsea, who give me more inspiration than they will ever know. Because of this MonSter we all live with, they are being raised by family members, but know that I love them and will do what God has taught me to be right for them. Dustin was born on Valentine's Day of 1991 and Chelsea, on the 3rd of July, 1992. I have my Sweetheart and my Firecracker, in both of them. I was diagnosed on April 7, 2001 and am dealing with the changes that come on a daily basis. I was working full time, taking care of myself in all aspects of life, until I was stricken down and the doctors have told me that I will never again go back to living my life as I knew it. I am still very ambulatory and fight to stay that way. I constantly research everything I can about this debilitating disease and try my best to stay one step ahead of it. I have been writing for so long that I can't remember a time when words didn't flow from brain, to pen, to paper. I have, since going on this permanent vacation, been working on a book that will hopefully, one day, be completed and published. The title for a long time has been "Unbroken Desire." I haven't, yet, finished it, so the title is beginning to take on a new meaning and may change several times before it is actually done. I hope in some way, my writings and thoughts will be just what someone needs to brighten their day or at least make them think about all that we have been given in this life, good or bad. I always remember being told that God wouldn't give us more than we can handle. And sometimes, in times of trouble, still I ask Him why He trusts me so much. But always remember this......... Life goes on, and gets better, if you still have hope, love, and still believe in ANGELS! Debbie Lynne--Ricochet
Hi all! I'm Sandy (the one with the MSonster) and
the good looking guy with me is my husband, Scott. From: Irishiz913@aol.com
Patti on the left
My name is Kris Lipartito. I am the youngest child of Ron and Shirley Crooker and yes, I’m spoiled. I am thirty-six years old and have been married to the most wonderful man on earth, Michael, for seventeen years. We have three beautiful children and a dog named Blue. I am a stay at home mom and enjoy volunteering in my children’s schools for a variety of activities. I take college courses at night. Currently I am taking Sociology. I have no goal at this time regarding my educational aspirations. I just enjoy learning. I have had ms for seventeen years and am doing well. I can’t walk a straight line, which can be a problem if I decide to take up the tightrope or cross a raging river via a log. Otherwise, the fact that I can’t put one foot in front of the other isn’t really a problem for me. I am on Avonex and have been for four years. I am doing well on this treatment though I do grow tired of the injections. I live a full and generally happy life. I enjoy reading this online magazine and the many contributions of its readers. (See Ron and Shirley also in the Gallery)
NEW BIO: Well, here's a little about me ... I was diagnosed with Relapsing/Remitting M.S. in April 2000 and I was using Avonex, but I am now on Copaxone. I am doing real well as the symptoms are mostly "invisible" and, thankfully for me, it hasn't changed my life that much at all. Even though I have had symptoms since 1989 that we all thought stemmed from a car accident that had me paralyzed for over 1/2 a year and left me with permanent back, neck and shoulder damage with the spinal compression that caused me to lose 1-1/2 in height to bring me down to my now shrunken frame of only 6'3". LMAO I moved to the Ozarks of Missouri, near Branson, in Sept. 2001 from the Chicago and Milwaukee areas. I live in a very rural town, in a little 2 bedroom house on a hill. I am divorced, no kids (that I know of), and one Harrier pup, Buster, that I live alone with. I work as a mechanic part-time at my Uncle's station along with being a gigging musician with "Tripple Threat Roadhouse Blues Band". Soon I will be moving to Buffalo to be with the Lady I am in love with and starting our lives together. I have been a musician since I was 5 years old. I'm a drummer and vocalist. I also was a harmonica player/lead vocalist for a Blues band for 3 years. The Blues is my main form of music, though I am deeply rooted in Classic Rock and Country, too. I have been in several Rock, Blues and Country bands, one Jazz band, an all acoustic instrument band playing original songs and a 9 piece Funk band. I got into my first bar band at 15. The band I am in now, Tripple Threat Roadhouse Blues Band is based in Blues but has a rock edge to it! Visit my band site at tripplethreatblues.bravehost.com/index.htm I am a writer. I write poems and had 2 of them published in the summer of 2003, yes, in another forum than this site! My poems tend to be the very sappy, idealistic, romantic dreams that I have of love! So, BEWARE!!! I also write some short stories and I am a songwriter. My songs tend to be on the bad love side, ya know, heartbreak songs, but I write whatever is in my heart at the moment that's why the conflict between my poems and my lyrics subjects. Hopefully, those days are long gone! Anything else you want to know, just e-mail me at Van.Lawrence@gmail.com or drop by and join my writings site at groups.msn.com/vanlawrence-songwriter or go to my main site and read my writings for yourself at www.angelfire.com/wi/bluezdrummer where you will also get to download a couple of sound files recorded live of me with my band at a couple of our gigs! If you have any questions, just ask me. Just don't ask me my opinion on something unless you truly wanna know!! ROFLMAO - Van "OzarkOutlaw" Lawrence
Dave Halkyard, Writer and Poet
Email: david@halkyard.onyxnet.co.uk Profession: Quality Assurance Engineer Age: 54 Years Nationality: English Diagnosis: Secondary Progressive Date of Diagnosis: 1992
At present I love Golf and used to play off 5 handicap now I will be lucky if I can play to 20 Handicap, using my golf cart but still love the game. I retired early due to my disabilities, but still keep myself busy with my faithful PC, writing the odd poem and the like. I also have 3 grandchildren (all girls) two live in Ontario with my daughter and her husband. I am not a negative person and believe I will walk a reasonable distance without sticks in the future, it may be a while away but nothing worth waiting for comes easy. In 1990 I was involved in a motorcar accident and believe this was the trauma that triggered the beginning of my Multiple Sclerosis attacks. During the year of 1991 I started to tire quite quickly and my left foot began to drop. Theses were my first MS symptoms. Later I could not flex from the ankle. I could not lift my foot from the knee or hip. My left hand was claw like and weak and I could not straighten my arm in an upward direction. I had no energy or stamina and walked with the aid of a stick. My walking distance was approximately 25 meters The only treatment I could receive here in the UK was steroid after an exacerbation. I was anxious because I was aware there was no know cure or effective treatment available to date (1997). After chatting with a email friend Gary Shane from USA he told me of his visit to a Dr in Athens who prescribed low dose Mitoxantrone. So after my own research I went and had this treatment for about 30 months from October 1997 to March 2000, it meant a trip to Athens every 3 months. I stopped deteriorating and improved from 3.5 to 2.5 on the EDSS scale. Of course I have now reached my maximum dose. Since stopping the treatment I have again deteriorated and currently about 4.5 on the EDSS scale. I hope to start Beta Interferon in April of this year, if the NHS have the funding in place. If that fails to work for me then I am considering a stem cell transplant. In the mean time I try to keep fit doing various stretches, use a electrical muscle stimulation and exercises with assistance. I also have a regime of vits and mins designed by a nutrition advisor.
Hi, My name is Gina and Im 43 years old. I am a real estate appraiser and train dogs professionally as well. As a matter of fact, I was training dogs not only in obedience but for the disabled also. Dogs are part of my life- showing, training and also breeding German Shepherds, Yorkies and Chihuahua's. I was diagnosed with MS in June, 1999. I woke up numb from the waist down. I dreaded going to the doctor because like so many times before, I was afraid they would once again tell me it was all in my head. Well guess what, it was! Sort of! My sister Kim took me to the hospital and was with me when I received my diagnosis. She was with me every step of the way until she herself became ill with cancer and I lost her in Feb., 2002. I am married to Randy and have one daughter, Jennifer who is soon to be 23. My parents, husband and daughter have been wonderful throughout my MS experiences. I was frightened beyond measure when I got this dreadful news and thought my life was over. Not that I did anything super, but... It was probably after that first year that I decided to take MS by the horns and believe what I was taught... I have MS, but it doesn't have ME. Car, I appreciate you so much for allowing me to come here and share my stories with you all. Gina's email address: Ishalgo@aol.com
Andrea Martell, Writer and Publisher
The Disabled Entrepreneur http://www.disabledentrepreneur.com sign up for our FREE newsletter http://www.disabledentrepreneur.com/cgi-bin/mojo.cgi "Helping people with disabilities become successful entrepreneurs" Free financial education for people with disabilities.
editor@disabledentrepreneur.com ***********************************************
(That's my husband, Larry, and my cat, Kira.)
(It's an action shot...Larry set up the camera, and almost sat on the cat when he made the dive for the couch. lol) We live in Iowa, just across the border from South Dakota. I worked as a job developer/job coach for vocational rehabilitation clients, but have had to give it up. My husband, Larry, is a crew chief in the South Dakota Air Guard. We have four grown children, 3 grandchildren, three dogs, one cat, and a cockatiel. One more dog, and we'll be official rednecks. Oh, and 2 more cats that adopted us, but Larry says they're not mine and I can't feed them. Yeah, right! Their names are Oscar and Felix. Reach Maggie by email to comment: magpie@svtv.com
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