Jooly's Joint: people with MS supporting each other

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JJ World Members!

JJ World's Membership Co-ordinator is Divvy from the UK.

If you're a member of JJ World you can have your profile and photo added to this page!

Just email Divvy at Tell Divvy you'd like to have your profile added to this page and she will be pleased to help you.


Name: Alex UK
From: Ripley, Derbyshire, UK
I have a 22-year old son whom I'm very proud of. I divorced in '91. I don't work. I'm into music, especiall Century 106 (good East Midlands radio). My first CD was by Enya. I'm on Zanaflex, Oxybutynin (for my bladder) and St John's Wort (non-presciption anti-depressant). I was in a car crash in '94 (95 lost vertibases replaced with titanium springs). My consultant agrees that I can still drive if someone bungs my wheelchair in the car.


Name: Ann UK
From: London, UK (though originally from Norway)
Hi! I'm divorced, no children, unemployed due to my disability. Before that I was a nanny.


Name: Annie UK
From: Lancashire, UK
Hello freinds. I've had MS for 20 years and had been in remission for a number of years, but recently the monster has reappeared. I'm divorced and live with 3 of my 6 children, all teenagers, ahhhhhh! I have many interests which include: music, reading, TV, video, theatre, cinema, dining out, trips to the pub occasionally, quizzes, socialising (not that I go out much now) and learning to use my PC, which at the moment is my main contact with outside world. I hope to do an Open University course (ha ha ha, as you can see, I have a good sense of humour! Still, I can dream). I attend the local MS branch socials one a month.


Name: Chloe UK
From: Bristol, UK
I'm 30. I have a wonderful fiance who I've been with 10 years. I was hospitalised in '00 with ataxia, which they thought may be due to a stroke so I had an emergency MRI then a lumbar puncture. I was diagnosis 4 months later. I'm waiting for an assessment for beta interferon. Enough of the nasties - I enjoy travelling, spending time with friends and good food! And of course the usual: reading and films. I have particually enjoyed my time in the South Western deserts of the US - so much amazing wildlife, rock formations and zero humidity!


Name : Dave UK
From : Swansea, South Wales, UK
Born and bred in Swansea, married to Jan with 2 daughters 20 & 18 years old. Diagnosed with Primary Progressive MonSter in Jan '99 (but had some symptoms for at least 5 years before). Main symptoms are fatigue, poor walking, bladder problems and headaches, now using a walking stick and Wheelie when out and about. Now retired on ill health from full-time working (used to be a Process Technologist with large Aluminium company). Jan says it's different "living with a pensioner". Hobbies are computers, reading (mainly crime, sci fi and horror), listening to music, eating out and watching detective series on TV. Medications are Oxybutinin, Modfinal and Amitryptiline plus complementary medicine. Favourite saying: I thought I saw light at the end of the tunnel but it was some bxxxxxx with a torch bringing more troubles(!).


Name: Debra Canada
From: Vernon, BC, Canada.
We have 3 lakes. One is 65 miles long. We have mountains that take your breath away. We have many orchards with the best fruit. One mountain is 'Silver Star'. There's so much to do, even digging, to get you out for a while. On the mountain you see a mountain from one end of the sky to the other. Our city is pretty and if you dig around quaint little areas can keep you from going home. There are a lot of people helping people.


Name Denn Canada
I've had MS for 31 years. I still get around and drive and can walk with a walker for any distance. I live on my own (wife left 3 years ago). Busy all the time, I can't fit everything in a day but I try.


Name: Diana USA
From: USA
I've been married 13 years. No children, but we have 2 cats. Correction: a neighbor told me to be policitically correct, I should call them "Feline-Americans"! Um... I think she was serious! I was diagnosed with MS in '98 and I'm doing well on Avonex. I've also been with Jooly's Joint since '98, and it's been one of the best 'medicines' anyone could give me.


Name: Ellen USA
From: Huntingdon, WV
I live with my husband of 30 years, my Golden Retriever, Allie, and my cat, Rajah. I've had MS for over 10 years. I have a website at and just published a book. It's a Christian, historical novel. My focus right now is on trying to encourage others to find something to put their attentions on, hopefully helping others. We are vital members of society and still have great worth!


Name: Francine USA
From: Fresno, CA, USA
I've been married for 26 years. I was diagnosed with RR MS in '98. I'm a retired Registered Nurse, transitioning to freelance writer. My husband and I enjoy family, church, friends, fishing, camping, astronomy, reading, writing short stories and poetry (me), many types of music, collecting power tools (him) and blue and white china pieces (me)! Hope to get to know everyone better as the days go by.


Name: Gloria USA
From: New York City
I was diagnosed at 29; no obvious symptoms noticeable by others or abnormally affecting me til about 3 years ago - pretty fortunate, eh? I was put on Avonex. I was RR but my new neuro put chronic/progressive on my chart and refused to refill my script. I've gotten worse in the 3 months since then and was told to call the Director of HIP (my HMO) about having it re-scripted. No struggle with loneliness but rarely see anyone or go out anywhere. I see myself as a clown in a dungeon. I play endless games of scrabble by myself (still a kind of word freak). No pain or other MS symptoms except I cannot really walk! I no longer read books (I was a voracious reader and HS English teacher, even got a short story published in a national magazine at 18). I'm unmarried, no children, a cat.


Name: Heidi
From: Pennsylvania, USA
In '91 the neurologists found MS in an MRI, but didn't tell me about it until '99 with my second documented attack. I've taken Avonex since '99. I want to form a positive support group of friends. I want to inspire you and vice versa.


Name: Helen USA
From: Deerfield, Illinois, USA
I was diagnosed in '91. I knew I had it but wasn't diagnosed for 2 years. I have a 16-year-old son. There are times when I'm lonely. I just started going to singles dances, but they are a joke. I hope to make some new friends on Jooly's Joint.


Name: Jim USA
From: USA
I graduated from Melbourne High School ('57), Melbourne, Fla; attended Emory University, received A.B. in '61, with major in history and chemistry; graduated from Emory University School of Dentistry in '66, with D.D.S. degree. I served in the U.S. Navy from '62-'68 - United States Naval Submarine Force, Groton, Conn. After being released from the Navy, I began my dental practice in Marietta, Ga in 1968. I also was an Assistant Professor of Removable Prosthetics at Emory University School of Dentistry - '69-'89. I was diagnosed with RRMS in '98, and have been associated with Jooly's Joint since then.


Name: Jo UK
From: Essex, UK
"I was diagnosed in July '03. I'm on Betaferon – ARGH! Apparently, my MS is ‘busy’, hmmm. I'm just going along with my life, a little wobbly nowadays! I'm a Senior Allocations Officer for a Local Authority. The diagnosis changed my whole life in a matter of weeks but I'm very slowly learning to live with this. I enjoy football and admit to supporting West Ham United! I have 9-year-old twins almost 10 now! A boy and a girl."


Joanna USA
From: USA. I was born in Poland, and grew up in India and England. I lived in France for 2 years.
I've had MS 40 years with a long litany of problems and drugs. Hobbies: photography, reading, music and PC.


Name: Joyce USA

From: USA I'm a teacher of high school special ed students and Director of an MS program for teachers of Learning Disabled students at NYU, Chadron State College and Western Kentucky University. Additionally, I taught study skills and reading to college and grad students at the University of Manitoba and Oregon State University. If anyone is interested in my method, let me know and I will send you a copy - gets As if followed! I had a daughter in l979. Elyse graduated from college last year and is doing social work with new mothers in Virginia this year.


Name: Kristjan Estonia
From: Tallinn, Estonia
My was MS diagnosed in 2000. Currently I'm on Rebif. I'm married and I have 3 wonderful children from my first marriage. I'm a new media journalist and information designer. My hobbies are listening to music (folk, blues, jazz, rock), playing bass guitar and an Estonian traditional instrument called a kannel, reading, cooking, travelling, and running (not very fast but I still call it running). Favourite saying: when I turn blue I start breathing again.


Name: Leila Canada
From: Mississauga, Ontario, Canada
I use the handle Dice and love Jooly's Joint! I've been coming here for some time. I also have had a head injury which I feel brought on MS. I have 2 daughters and run a mobile welding business. I work from home and that helps me a lot.


Name: Linda Canada
From: Vancouver, British Columbia, Canada.
My MS diagnosis was finally made in April '01, and I'm in my second year on Copaxone. It's making a positive difference in my relapse/remittance cycle. I'm single and live independently, with some homemaker time, along with my elderly ShihTzu, Abraham. I do my daily exercise when I walk him. He, with his arthritis, and me with my wheeled walker manage to just about walk the same speed. For travels of any distance, I use my power wheelchair. I love it, it is opening up my life again. I use local bus transportation on the routes that have an accessible bus and am enjoying being able to go to the opera, a concert or a hockey game. My social life is primarily tied in with my nearby church. I'm enjoying reading again (for 3 years nystagmus and internuclear opthalmoplegia prevented me from doing so). Hope to meet a lot of you in the next while. Look for joy in some part of every day! (My motto for postings and for life.)


Name: Linda USA
From: Schuylkill Haven, PA
Hello friends! I've had MS diagnosed since '90, though it was obvious many years before that. I'm now secondary progressive. I've been everything from totally blind (6 months), to double vision, and just plain rotten vision. I was even totally paralyzed and spent 6 months literally in bed! Cognitive problems now seem to be the 'funniest'! Get lost going around the block! I married my first love finally after 40 years... of course there were a few in between, but this is the most wonderful man Heaven produced! Between us we have 4 children (35, 34, 33, 32). Happiness is a warm, wonderful family which also includes Toby my Service Dog and Sami the cat. Whoa, how could I forget my 86-year-old mother who's more than a 'piece of work', she's better all the way around than I am! I was a Registered Nurse who finally went back to school to get my BSN/MSN and quit working one year later. Now I'm a 'Professional Sleeper'. Since I'm one of the original members of Jooly's Joint it's obvious I'm a computer person. Love Ebay shopping, a trip to the mall and going out to eat! I plan to keep walking till I literally fall over and can't get up again. MS may be a monster, but even monsters need to know their place! Tried the ABC drugs, didn't work. Now just on Coral Calcium, Zocor and pure tenacity. I love life more dearly than ever, especially all the good people I've met. Favorite saying: 'What do you mean "I CAN'T DO THAT"?!'


Name: Lynn USA
From: USA
I was diagnosed at 27... it's been a long 5 years but, thankfully, MS has taken a little break... hopefully, for good but I still have my days where it reminds me of its existence. I used to love running, biking, taking my long walks... I used to love going on 'Lynn Dates', going out to dinner then either a movie or a bookstore. Ahhh, those where the days! But the 'New Lynn', I'm still trying to get to know her.


Name: Margaret USA
From: Northern Virginia
I've been married for 25 years and have 2 daughters, age 19 and 15. I'm an elementary reading teacher in a Title One (high risk) school which keeps me busy. I was diagnosed with MS in '96. I've been on Betaseron since '98. Until I went on the medication, I was having many flare ups, but now I'm basically doing well. I've been in a follow up study at NIH about the long term effects of the medication and have enjoyed the feedback I receive when I go in for a visit.


Name: Michael Australia
From: New South Wales, Australia
I've had MS for many years but was not aware of it until three years ago. I just thought my walking disability was due to an accident I'd when I was 19. I'm now 42. I ws trained as an engineer and worked in the field until I wasn't able to walk any more. I spend my days in a mobility scooter or wheelchair, even though I'm still able to stand. You soon find out who your friends truly are but that's life and I'm sure you all can relate to it.


Name: Sandie (aka Ginge) UK
From: Norfolk, UK
I've been a member of JJ for a while now and write a monthly diary on the site! My next birthday will surprise me with 55 years of life! I live in Norfolk with Arf, my hubby, and 2 black cats! Poetry, classical music and Oasis are my passions! Have PP MS so spend a lot of time on this plonking machine which gives me a great deal of pleasure and my Arf a lot of headaches when I get the shakes and press the wrong button and delete everything in sight! I love everything edible especially chocolate flapjack! Hate my fat tum! Love Addenbrookes hospital in Cambridge - they saved my life as I had a brain tumour in 1998 - hence the garbled profile! I also write like this so be warned!


Name: Stacy USA
From: Kansas City, Missouri, USA
I was diagnosed 2 years ago. I'm on Copaxone now. Hoping for healing like everyone else.


Name: Tom USA
From: USA
I was diagnosed with MS in '84. I wrote a book 'Coping and prevailing' in '02.


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