Jooly's Joint: people with MS supporting each other

[MSers] [Family] [Fun] [Contact Jooly] [About Jooly] [Site Map]



A little inspiration JJUK Members!

JJUK 's Membership Co-ordinator is Divvy from London.

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

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




Divvy

Name: Adam
From: North Wales
I have joined on behalf of my younger brother who was recently diagnosed with MS (as well as being a Coeliac and probably suffering from Gastroparesis too). I'm looking to gain as much info as possible from this friendly group.


 

Name: Alan
From: Glenmavis, Scotland
I was diagnosed with RR MS in '01. Happily married to Liz since '87. My main hobby was fly fishing until the MonSter took hold.
.


Name: Alex
From: Ripley, Derbyshire
I have a son who I'm very proud of born in '81. I divorced in '91. I don't work now. I'm into music, especially Century 106 FM (good East Midlands radio). The first CD I owned was by Enya (well, someone has to admit to buying her CDs). I'm on Zanaflex, Oxybutynin (for my bladder, also ISC) and St John's Wort (non-prescription anti-depressant). I was in a car crash in '94 (not my fault). In '95 my lost vertebrates were replaced with titanium springs at LCGH (ace operation, no stars for the NHS food).



Alex

Name: Alex
From: Enfield, North London
I was diagnosed in January '03 with RRMS and have been referred to Dr Brenner at the Royal Free for beta interferon treatment and will hopefully see him soon, I live in hope! I stopped working as a field service/installation engineer for a bakery equipment company in December '02 after my second episode which has left me unable to walk very far, the left leg being the problem. The double vision is still present and has been since August'01. I'm divorced and have 3 children, 1 girl and 2 boys 18/17/15. I enjoy watching most sports but football (Chelsea) is my main passion along with match fishing which I'm still able to do.



Alex

Name: Alison
From: Newcastle (upon Tyne)
I have secondary progressive MS. I'm still able to walk. I use a 4-wheel walker (shopper) when going to local shops and have a 3-wheel walker to take with me when going to choir (I need a music stand for anything other than light scores). Other hobbies: reading, playing games on the computer.


 

Name: Amanda
From: Penzance, Cornwall
I've been diagnosed relapsing-remitting for 10 years, but have a horrible feeling it's moving itself on - currently numb and stiff legs. On the other hand, I'm still working (teacher of African drumming), have two great kids and a husband to keep me going. I was an acupuncturist for 16 years, but got to a point(!) where it was taking more out of me than I could afford. Anyone with questions feel free to ask.


 

Name: Amanda
From: Grimsby
I was diagnosed with RR MS in October '01 after having a numb face for a few months, then I lost my co-ordination a bit. Quite relieved when I got the diagnosis because I thought I had a brain tumour. Since then I've been into hospital 3 times with vertigo and double vision but have fully recovered each time (so far). Now fortunate enough to be on Avonex - not experiencing any side-effects except waking with a headache the next day if I don't take Ibuprofen before I inject. Live with my partner of 6 years and 3 cats, 2 rodents, a parrot and a fish (no children - hoorah!).


 

Name: Ange
From: Thirsk, Yorkshire
I was diagnosed with MS in '97 (6 years ago). I live with my partner, Julian and my children Catherine (15) and Daniel (13). I moved here last year from Miami, where I had lived for 13 years and before that Venezuela for 9 years. I'm not working here at the moment, but hope to remedy that soon.



Ange

Name: Ann
From: Lancashire
I was diagnosed 20 years ago. Divorced. Full-time mother of 6, only 3 at home. Non smoker or driver and have lots of interests, but can't follow them all at moment. Member of local branch of MS Society. I'm studying with OU at the moment. I love JJUK and JJ World and enjoy reading emails. My maxim is 'live each day at a time and don't let 'the monster' rule your life'. My catchphrase is: 'keep smiling'.


 

Anne
From: I'm a Londoner living in Norfolk
I was Diagnosed 1992, but my neuro thinks I've had it since 1984 following the sudden death of ny father. Now I'm in wheelchair ALL the time. I have a scooter for outdoor use, grandchildren love it! I have a wonderful husband, married 29 years, together 35 years. We have 32-year-old twins and I have two step-sons and several grandchildren.



Anne

Name: Briony
From: Farnham, Surrey
The name's Briony, but you can call me 'Be'! As I was only diagnosied in Dec '03 you could say I'm pretty new to this. Yet I'm not one to take things lying down. My poor PC has never seen so much action, I'm trying to keep up-to-date with all the news on MS. Unfortunately I don't know what type of MS I have, but this is my 3rd attack in 2 years. I try to keep a witty sense of humour what with falling on my butt often and losing the plot every once in a while! I must admit, having a total life change has made me look at things in a different light. I've realised how important it is to take one step at a time (good job too!). Well folks, I look forward to chatting to you all (one at a time!).



Briony

Name: Bruce
From: Birmingham
I'm married to Nongyow, 2 kids aged 4 and 2. I was diagnosed with RR MS in Thailand in '96, but had been feeling a bit rubbish for a couple of years before that. I'd never met anyone with MS till last year, when I met Jooly - and then my aunt was diagnosed secondary progressive MS. I'm pretty well, except I can't play guitar any more - which pains me enormously as I used to be a professional musician. I slur my speech when very tired or after 6 pints of Guinness. I write about Internet technologies. But really, I just love meeting people.


 

Name: Bryn
I'm a Prison Visitor, involved in Family History Research for a Canadian Organisation. I support my local football club (with passion!) and like to go swimming and music/theatre.


 

Name: Caroline
From: Oxford
I'm now secondary progressive after being relapsing remitting from '66-'88, when definitive diagnosis was made. I'm a retired teacher of philosophy (with philosphical theology as a sideline), married to a retired scientific academic, with a daughter doing a PhD in psychology, and a son who is a professional orchestral musician, and 2 splendid grandsons.


 

Name: Caroline
From: Leiston, Suffolk
I was diagnosed in '92 although I had suspicious symptoms since mid the '80s. So far it's been relapsing remitting. Due to managing myself better than before, including stopping working, I have fewer big 'crashes' but longer grumbling symptoms, fatigue being the main on-going trouble. Short courses of steroids when 'It' temporarily got my eyesight, now taking Amitriptyline for a dodgy hand. Married and decided not to have kids. One gorgeous cat (surrogate child). Now live in Suffolk where I'm lucky to enjoy the fantastic support from our MS nurse. Try to look on the bright side, with differing degrees of success! Fill my days keeping house and doing creative things including a millinery course.



Caroline

Name: Caron
From: Worthing, West Sussex
I was diagnosed when I lived in Ireland, back in '97, when my youngest child - Hector - was 6 months old. I have 2 other children, Georgia & Silas who are now 10 and nearly 9. It's slightly worrying because when I joined JJ all the way back in the old Millennium, I lived with my husband, the 3 children, 2 dogs, 2 cats & 2 birds. Now I live back in good old Blighty, in Worthing (West Sussex) with the 3 children and 1 dog. That's her with me in the photo. Apparently, I'm not good at pets (or husbands, it seems!)! I'm now SP MS, with a dragging left foot and I take Lustral and Modafinil, which has done wonders for my fatigue. I also have a super scooter, which I am aiming to "customize" over the winter. I've already customized my walking sticks, and my usual one is a rather fetching green paisley job. I figure if you have to use it, you may as well make it a fashion accessory! I'm studying to be a proof-reader & editor, which is something I've wanted to do for a long time, and when the dust has settled from my divorce I will carry on with my counselling training. So, not only will I be able to tell you what is wrong with your piece of writing, I will be able to help you to discover why!!



Caron

Name: Chanty
From: South Wales
I was diagnosed in 2000 with RRMS. I started on Avonex in 2006. I was divorced in 2003 because hubby couldn't handle me having MS. I have a son who is 10 with suspected aspergers hence the reason I've moved back to Wales to be close to my family. I'm the happiest I've been in years. Even with the MS life is looking good.



Chanty

Name: Charlotte
From: Edinburgh, but live in Warwickshire
I was diagnosed in October '02 with RR MS and am just about to start Copaxone. I live with my girlfriend of 4 years and my dog and cat and used to study Biomedical Science at Uni - but am having a year out coz of the onset of MS. I had absolutely no inkling that I had MS so was very surprised to have the first attack, followed by 2 more in the past 6 months.



Charlotte

Name: Chris
From: Nuneaton, Warwickshire
I was diagnosed with relapsing remitting MS in April 2001, after a few years of knowing there was something wrong but not knowing what! I work full-time as a Medical Secretary in an Oncology Ward which helps me not to dwell too much on my own problems. I'm married with 2 wonderful adult children aged 23 and 21.


 

Name: Chris
From: Sunderland
I was diagnosed in '96, I used to be relapsing remitting and on Betaferon, now progressive and on Mitoxantrone. I use a wheelchair but I'm a lot more positive about that than I thought I would be.


 

Name: Chris
From: Devon
I live with my wife Cathy and our spaniel. When diagnosed, more than 10 years ago, my neurologist advised me to keep away from the MS Society, he seemed to think that it would do me more harm than good, mixing with fellow MSers - then again, he was the chap who told me that MS doesn't make you feel unwell. I was never told of my type of MS, just that I had it. As I have never had relapses of any kind, just a progression of deteriorating symptoms, I have classed myself as primary progressive MS and am hoping for a miracle.



Chris

Name: Dale
From: Billingham, Tees Valley
I was diagnosed in '99 after 3 years of being told it was something else (including cancer). The eneral feeling is that I had it for at least 8 years before that. My hobbies include computers and military aviation history. I'm outwardly shaky, but look 'normal'. My lovely long suffering wife says I try too hard and end up paying for it, usually the next day. I was forced out of work and get really angry at how people with MS get treated by the Government. I have one son in the RAF and one still at school, both are fantastic. I say what I feel and enjoy my life to the full with a lot of laughter!


 

Name: Dana
From: West Midlands, England
I'm 34-year-old mother to three gorgeous children. I feel lucky as I have an MS nurse. I've met her twice now. She actually listens and I think she cares! Which can only be good. My family are ok with it all now (apart from my mom she still can't believe it). What's to believe? I have MS now get on with life! I really enjoy being a member of JJUK and the chats in our chatroom.


 

Name: Dave
From: Swansea, South Wales
Born and bred in Swansea, married to Jan with 2 daughters 20 and 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 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 a 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 medication.



Dave

Name: Dave
From: Grantham, Lincolnshire
I have secondary progressive MS diagnosed 5 years ago and thankfully reasonably mild. I'm well married, 36 years this September. The MS has made life a little awkward. My wife is now the main bread-winner, I only work 9 hours a week, Tuesday and Friday mornings, but we survive. We have a son who is 21 this year and does his own thing, works hard, and thankfully is into cars and girls, but very thankfully we are pleased to say he is not intrested in drugs or cigs (can't ask much more than that, and he is no angel).


 

Name: Dave
I was diagnosed with relapsing remitting MS in '02. I've been with my partner for 12 years. We have a daughter aged 5 (going on 15). I was medically retired from my job in '03. I have balance problems. My mobility isn't too bad. Otherwise so so.


 

Name: Dave
From: Hinckley, Leicestershire
I'm a divorced dad to three lovely kids. I have secondary progressive MS and after a spell of working part-time I'm retiring soon. Apart from the usual fatigue I get severe pain in my left arm and shoulder. I also get backache and now my speech is bad. I've done a lot in my short time really. I always wanted to go to Iceland to see the volcanoes, waterfalls, etc. when I could still walk. I did and it was fantastic. I'm interested in travel, football (like all men!), webpals and texting.


 

Name: Debs
From: Leigh, Lancashire
I was diagnosed with RR MS on 20 January this year. I've been unable to work since August last year because of relapses. I'm a healthcare assistant at a nearby hospital and my MS has left me with weakness to my right side which gets worse the more I try and do (just typing this is killing me). My job entails taking care of pre-op and post-op patients, a tiring way to earn a living at the best of times, especially when you have to do nights for 2 weeks every couple of months! The last few weeks have been the worst as I have given up driving because of my blurred vision. I'm stuck indoors with no-one to talk to except the dog most of the time, so I could do with friends to chat to !


 

Name: Denise
From: East Hertfordshire
I was diagnosed with MS in '91. I walk with a cane and have just got a wheelchair. I have a supportive husband and son of 19.


 

Name: Derek
From: East London
I was diagnosed with primary progressive MS in 1998, but it had probably been around for at least 10 years before that. So it was far from a shock when the news came. I'm still mobile thanks to LDN. Regular gym use helps maintain a level of fitness, although often the most strenuous part of my workout involves getting up the stairs into the place. My hobbies include football, sailing and contempt for the drugs industry.


 

Name: Di
From: Croydon
I am 39 years young, married and have two beautiful children, a daughter 12 and our son who is 6. I have had relapsing remitting MS for four years now, and last year had to give up work due to the illness, but remain as active as I can. I love going out with my husband and the children, and like to write and also love a good read such as a murder mystery.


 

Name: Divvy
From: Sutton-at-Hone, Kent
I live with my boyfriend of 15 years and a cat who basically rules our lives. I was diagnosed with relapsing remitting MS in October 1998 and started on Rebif in March 2002. July 2005 was told had progressed to secondary progressive MS and stopped the Rebif. Now trying to do just symptom control as not keen on trying the mitoxantrone (chemo) just yet. My main problems are with walking and I am now in a wheelchair 24/7 although I started physio again and hope I'll get enough strength to be able to at least hobble around indoors. I still work full-time, but am not sure for how long. I like reading, listening to music and my computer! I have my own MS website atwww.btinternet.com/~mcbiffa.



Divvy

Name: Donna
From: North London
I'm 35, married to my lovely husband and we have 2 great children, 15 and 12. I've lived in North London all my life. I was diagnosed with MS in Jan '03 but have had it for 6 years. I didn't know I had it then but put symptoms down to other things. I've been medically retired from my job as a teaching assistant with children with special needs. I use a stick when walking. I'm lucky to have a very supportive family whom I'd be completely lost without!


 

Name: Doreen
From: Rotherham, South Yorkshire
I was diagnosed in 1966. I was 16 and was completely paralysed at first but after 3 x 3 week course of injections I gradually came back and was able to walk with just a slight limp after two years of being completely dependent on others (mainly my mum). I wed in 1969 gave birth to 3 sons. I divorced in1994. I use a manual wheelchair and zimmer frame to get around indoors and I have a mobility scooter for outside. All the best to all keep yourselves going best you can. My saying is 'there is always someone worse than me'.



Doreen

Name: Doris
From: Tyldesley, Lancashire
I was diagnosed in 1995. I am 60 years old and have two grown up children. I have 8 grandchildren. Up until 4 months ago I was a voluntary worker at the local hospital.


 

Name: Dorothy
From: Fife, Scotland
22 years ago I woke up and my right leg wouldn't work properly. I'm a doctor so I had a good idea what the problem was. I still dallied for 6 weeks before going to my GP as I was doing my last post-grad exams. My self-diagnosis was right. However I've been a consultant child psychiatrist for nearly 18 years although ill-health retirement beckons! I still haven't decided whether it's an advantage or a disadvantage to be a doctor when you have MS but I think probably the latter! I've just bought my second portable electric scooter. The first one fell to bits after going on too many long haul flights. Have scooter, will travel - what was that about retirement?


 

Name: Drew
From: Scotland
I was diagnosed in '98/'99 and apart from the initial steroid infusion (Prednisolene) I prefer the dietary route. This is not due to any form of 'bravado' more a search for a cost effective and long-term solution - I truly wish success to everyone on medication. As a firm believer in 'ownership' of problems and therefore solutions I fully intend to succeed for me and others with this condition. I suppose if I had a 'motto' it would be 'Never say die' and this I feel is a good principle to live by. I know that together we will crack this 'troublesome' condition.


 

Name: Ellie
From: Northumberland
I was diagnosed in '92 with primary progressive MS. I'm divorced, and mum to 2 daughters aged 19 and 17. I use a wheelchair full-time, haven't worked outside the home but have concentrated on bringing up my girls. I keep myself busy reading (mainly Christian books, although I left the C of E 5 years ago and haven't found another welcoming church) and books about simple and frugal living, environmental issues and other world religions. I also enjoy needlework and quilting, classical music and messing about on the computer. Over the years I've become quite isolated so I've decided '04 will be the year I break out of my shell and joining JJUK is my first step!


 

Name: Erling
From: Draethen, South Wales and sometimes near Rugby, Warwickshire
I'm half Norwegian; a 1952 collector's model that still clings onto delusions of foolish youth. Happily, I retain a lovely long-suffering wife, plus an amazing son who arrived on Christmas Eve 1980. I was diagnosed with primary progressive MS at 46. I can still manage 10 minutes of Status Quo, but then usually fall over to amusement of wife, but not my son! I'm still busy working full-time and, by not ironing, I have time for the MS Society as a national volunteer.



Earling

Name: Fi
From: Portsmouth
Hi, I turned 40 in 2006. I was living with my ex for 15 years who couldn't hack the MS so we split up. I was working as an office manager for my LEA but am gonna go for medical retirement as I've been off sick and haven't missed work at all! I had botox a year ago for my bladder which is nothing short of a miracle! Am on Avonex but it doesn't agree with me so am a patient of Bob Lawrence and due to start LDN shortly.



Fi

Name: Fiona
From: Just outside Glasgow
I'm a single parent (let's not get into partners who disappear as fast as their tiny little feet can carry them when the going gets rough) of an 11-year-old girl who is taller than me (I'm 5'2") and has feet 2 sizes larger and growing! There is definitely something wrong with the genes although no-one else in my family has the MS susceptible ones! I kept really well for 12 years, played golf, did a parachute jump, etc., but the last 2 years seem to be on an express train going down and I'm now using 2 sticks. I still do my best to enjoy life and go to a pub quiz on a Sunday nights and do voluntary work aimed at the disabled. This photo was taken in Spain. I just got myself a Lhaso Apso puppy to try and encourage me to go walking, so here's hoping.



Fiona

Name: Gina
From: Guernsey
I'm married and we have five 'children' aged 19 down to nine. I was diagnosed in '97 with possible MS based on an MRI scan and clinical symptoms. I'm still mobile, though sometimes with a funny gait which makes my youngest laugh! I love animals and our home is shared with a rough coated parson jack russell, two cats, a huge rabbit, two guinea pigs, goldfish and four chickens. I do voluntary kids club work and school assemblies which are completely mad and NOT what you will remember from your school days. I love making new friends, laughing about anything and making the best of each day. I`ve been told I talk a lot!



Gina

Name: Ginge
From: a Yorkshire lass now living in Norfolk
Hi! I'm Sandie - write yer diary on JJ's - so you know sort of what I'm like!!!! Although still a tad whacky, have had some bad depressive times and these have made me re-think how I live from day to day! Instead of going 90mph and collapsing, I now shuffle regally and pace myself when I remember! Love writing, poetry, music, especially Daniel Bedingfield (Yes! I know I'm a sad git and totally mad, him being only 22 years old!!!!!) and anything classical! Live with Arf and 2 black cats - am now classed as secondary progressive but I prefer 'classy'!!!!!!!!!!!!
Read Ginge's diary!



Ginge

Name: Glyn
From: North Wales
For my sins write along with Sandie, Julie's monthly 'Diaries' where there is a photo of me on my quad motorbike. I was diagnosed in '80, but it was coming at me 'they' reckon about 8 years earlier. Being a workaholic farmer I wouldn't give in to this silly disease. I kept working hard on our farm milking 70 cows! I was an undisputed District & Community councillor, chairman of our local branch NFU (National Farmers Union), and President of our local branch YFC (Young Farmers Club). I kept pestering my GP for steroids to keep me working. I ended up being a tablet controlled diabetic. Prostate cancer also came to me, which is also controlled with injections. Then someone 'up there' must have thought that 'HE' had better slow me up a bit! Since then I've had a book published and now have the privilege of writing a monthly 'Diary' for Jooly's Joint. I'm also now honorary secretary for our active senior citizens group in Flintshire.
Read Glyn's diary!



Glyn

Name: Graham
From: Blackburn, Lancashire
I was diagnosed in '88 with relapsing remitting MS. This didn't affect me until I got divorced last year then - wham - it hit big time and I was diagnosed with secondary progressive MS. I'm 42 and had to give up work as a Hotel Manager/Licensee which is difficult to turn my back on.


 

Name: Graham
From: Blackburn, Lancashire
I was diagnosed in '88 with relapsing remitting MS. This didn't affect me until I got divorced last year then - wham - it hit big time and I was diagnosed with secondary progressive MS. I'm 42 and had to give up work as a Hotel Manager/Licensee which is difficult to turn my back on.


 

Name: Gretchen
From: New Delhi, India
I was diagnosed in '99. I have visited JJ's periodically since then. My husband is in the Navy so we're always on the move. I've been wheelchair dependant since 03'. It was only my second relapse but boy was it a big one.


 

Name: Iain
From: London
I've been diagnosed with RRMS since the turn of the century - which makes it seem so long ago! My main problems are 'Elvis legs', fatigue and bladder issues. I used to work in IT but since the arrival of the MonSter I took my life in my hands and trained to be an actor (hence the poncey photo). Can't exactly say I'm a roaring success but the long periods of 'resting' are no problem as it means I can take the time I need to cope. Was born and brought up in the Stoke area and my neuro is still there.



Iain

Name: Jan
From: the heart of Sherwood Forest in Nottinghamshire
I was diagnosed in '99 with secondary progressive MS but they reckon I had relapsing remitting MS for years and just progressed to SP MS. I have a wonderful husband who takes care of me and 2 grown up sons. My main symptoms are mobility, though I can still walk small distances, and incontinence/bowel problems. I'm taking Oxybutinin and Amitryptilene plus a load of complementary medication. My hobbies are cross stitching, caravanning, computers and family history. My passion is collecting dragons - 51 at the last count!


 

Name: Jane
From: Cleveland, but now live in Grafton, Ohio
I've had MS since 1987. Until 2004 I worked in an all-male prison. I quit to take care of my 83-year-old mom ailing from Alzheimer's. Mom had to go into the nursing home in April, 2005, and I became weaker and more tired. I've been trying to get on SSI. I'm single, no children, loads of cats (they're my kids). I'm about to lose my car for non-payment! I use a cane. My sister also had MS.


 

Name: Jill
From: Medway, North Kent
I've had MS symptoms for 21 years but was only properly diagnosed in '93 with relapsing remitting MS which became secondary progressive in '98. I'm married and have a daughter aged 19 and son aged 16. I use crutches and a wheelchair for getting around. I think regular exercise is so important and I try to swim once a week. I like red wine and Stella Artois and chocolate (and Richard Gere).



Jill

Name: Jo
From: Originally Lancashire, now Bradford, West Yorkshire
I live with my partner Steve. We have 3 grown-up daughters and 2 grandchildren. I studied Textile Art at Leeds Art College '92-5 and would like to get back into doing some artwork again. I've been unable to work for nearly 5 years due to poor walking, but still don't have a diagnosis yet.


 

Name: Jo
From: Essex
I was diagnosed on 11 July '03. I live and work in Essex. I don't really know what this diagnosis will do to me, don't know the type I have! Basically just going along with life a little wobbly nowadays! I enjoy football and admit to supporting West Ham Utd! I have 9-year-old twins. I'm a Housing Manager.



Jo

Name: Jo
From: Winchester, Hampshire
I have an eight-year-old son and a lovely husband whom I married June this year. I was only told I had MS on June 4 so it was a very stressful time for me. Three years ago I had optic neuritis. MS was talked about then but I had no further attacks until March this year. I had double vision in the same eye. I have a slight loss in that eye. Apart from that I'm a little tired and achy. I'm still trying to come to terms with having MS. It's a really scary thing.



Jo

Name: Joanne
From: Lancashire
I live with my partner and two children. I've had MS since I was 13 but wasn't diagnosed until I was 19. I had a bad relapse when I had my little boy seven years ago and since then I've never been right. I've got a degree in leisure and tourism management but am not working. I had my baby six months ago so I'm adjusting to looking after a newborn again.


 

Name: Jonathan
From: South Shropshire
I was diagnosed with MS last March. I joined the MS Society and have now been elevated to the Committee. I'm enjoying it or as best as it gets. I'm a Geordie so howay the lads.


 

Name: Judy
From: Huddersfield, West Yorkshire
PPMS diagnosed '95. I live with husband Richard and a parrot called Hootie. Have 3 grown up children - all flown the nest. Expecting our 1st grandchild in Sept '03. I'm a textile artist and Yorkshire MS Newsletter Editor.



Judy

Name: Julia
From: the Medieval part of the City of York
I was diagnosed 30 years ago. I was relapsing remitting but have now progressed to secondary progressive. I'm married, 3 children, 4 teenage grandchildren. I've been wheelchair bound for 5 years. I don't take prescribed drugs, but I do take vitamins in their place. My hobbies include caravanning, crosswords and studying alternative medicines.



Julia

Name: Julia
From: Portsmouth, Hants
My name is Julia but everyone calls me Jules (accept my mother!). I'm a mother of two older teenagers. I diagnosed myself in 1998 when I developed optic neuritis. This was later confirmed with an MRI which, as a stroppy know-it-all nurse, I demanded! My symptoms are few at the moment and the odd bit of falling over can be disguised behind a few too many drinks. My main frustrations are with the non-medical 'bits' like insurance and mortgages. I'm recently divorced so now being free and single (note I left out the young!) this is something I've had to deal with.



Julia

Name: Julie
From: Belper, Derbyshire
I'm new to being in a wheelchair, which I put down solely to a rubbish year starting with the death of my mother. I was diagnosed in '94 though I did suspect for about 8 years previously. Main symptoms are fatigue and pain. The pain we think is due to the immobility but I soon became hooked on a mixture of DF118's/Diazepam and grass (what a combination!) and now after the last 2/3 years of being quite ga ga I'm trying to cut down. Now trying Neurontin. I have a hubby of 20 years who is totally in denial and will not seek help of any kind, but I have 2 wonderful sons (12 and 15) who are much more tolerant, patient and very understanding. One of my New Year's Resolutions is NOT to be housebound, which I am at present.



Julie

Name: June
From: Sunderland
I am 56 and have been married for 28 years. I have mild MS and was diagnosed in 1994 after having problems for a few years before. I don't take any medication at all as I find the only thing that bothers me is the tiredness. I walk with a limp as well and I've only just started using a cane.


 

Name: Karen
From: Stoke-on-Trent
I'm happily married to Nick. I was diagnosed in '97 when I worked as an Office Manager for a Pottery Manufacturer. I had my first child in '98 (girl) and my second in '00 (boy). I gave up work at the beggining of 2000 due to persistant relapses. I'm now on Betaferon which has stabilised me and although I don't work anymore, I'm enjoying being a mum.


 

Name: Kim
From: Winchester, Hampshire
Married with 2 boys aged 10 & 16. Wonderful, loving, supportive husband and boys. Only diagnosed since May '03 and still haven't quite accepted the fact I can't walk or see very well after being such an active person and long to be put on some kind of medication. I feel so much better since finding Jooly's Joint and think it's absolutely brilliant.


 

Name: Kirsten
From: London
I'm currently in the limbo state of not having a 'clinical' diagnosis. However, I'm lucky enough to have friends I can compare notes with on symptoms as they happen, and a very supportive uncle who's had MS for 35 years. I try to keep a positive outlook, although occasionally I have a sense of humour failure if I'm not feeling great. At the moment my main aim is to get through each week and hope I have enough energy/balance/vision to go sailing over the weekend.


 

Name: Laurence
From: Saltford (between Bath and Bristol)
My first RR spell was in '76. I was diagnosed '83. I retired on medical ground from teaching as a modern languages teacher in 1995. I was already helping the MS research Unit at Bristol and took up the role of Patient Research Partner. I collect research updates and send them to the team and help with fundraising. My prescription is: campaigning, physiotherapy and websites. I do not take any medication apart from some homeopathic pills. I use crutches indoors or push my trusty trolley like a zimmer. Outdoors, it is a self wheeling chair.


 

69. Name: Leah
From: Weymouth
I'm 35, married mum of two. This is week 6 of my second MS episode. I'm waiting to see the consultant for formal confirmation, but my GP is a neuro-consultant and pretty sure it's MS. I saw him in '95 with pins & needles, all was fine. In 2000, 3 months after baby 1 I suffered optic neuritis. 6-9 months after that, all was fine. May '04, 10 months after baby 2, episode 2: right arm dead. Have completed a steroid course and am 98% fit, all arms and legs working. I'm planning to keep fit and well and no more babies!


 

Name: Lee
From: West Sussex
I don't have MS but I have a condition where the messages from my brain don't get to my legs properly, so I'm unable to walk. I've been using a wheelchair for 6 years now but it feels longer than that to me. I don't go to school as none of them are equipped for chairs where I live so I have home tuition.


 

Name: Lorraine
From: Essex
I was diagnosed in '02 with RR MS. I'm on Avonex after coming off Rebif because of injection site reactions (8 months on treatment). I'm divorced with 2 grown up daughters. I'm finding life very hard as I'm into the sixth month of a relapse. I'm scared of not recovering although trying to think positive.


 

Name: Louise
From: Lincoln
I'm single. I was diagnosed February '02 with RR and most days am still trying to get my head around it all! I was in the RAF for 12 years and now work in a Veterinary Hospital as a Receptionist/Pet Health Counsellor. I have a mad Jack Russell terrier called Murphy who is nearly 6 years old. I'm always up for a laugh and have an excellent sense of humour. I love chocolate and cheese (great for the waistband!) and I hate spinach, peppers, false people and bad time keepers!


 

Name: Lynne
From: Derbyshire
I was finally diagnosed in '99 after several years of symptoms and hospital tests. I'm now on Betaferon. I recently married Tony the wappy vicar from York and I now live there with my husband and 2 cats and occasionally his children. I have 2 gorgeous daughters aged 23 and 21. My legs are sometimes quite bad, I have very little feeling in my skin and other bits are iffy. I try not to be too serious about things and I try to laugh about the situations I get myself into. I think JJUK is brilliant and it is my daily lifeline to people who understand. Sometimes there are serious things but I enjoy the lighthearted stuff too, it reminds me that I am normal and I have MS too.



Lynne

Name: Maureen
From: Sheffield
I'm 63 and have had MS for 40 years. There was nothing like Jooly's Joint around then. It's much better to be able to hear other views. I belong to my local MSRC and meet lots of friends there. Since my husband died it's been a new way to meet people. I have two daughters and five grandchildren.


 

Name: Natalie
From: Billingshurst, West Sussex
Married (Neil) with 2 cats (Pixel and Smudge). No longer working - used to be a computer programmer. Diagnosed September '98. It actually started in '80 when I was 13 (the neuro believes in hindsight). Symptoms: fatigue, cognitive and memory, vertigo/dizziness and balance wobbles, occasional falls, minor bladder problems, random stabbing pains, 'migraines', nausea, sleep disturbance, very minor spasms/cramps. Medication: Detrusitol/Tolterodine for bladder. Occasional cannabis for pain, especially the 'migraines'. Hobbies: photography.
Website: http://www.natalie.ourshack.com/
Weblog/journal: http://natalief.livejournal.com/


 

Name: Natalie
From: Dundee, Scotland
I was diagnosed in June '03. I was a nursing student, but because of the severity of my relapse I had to withdraw from the course. I live at home with my parents and 2 brothers. I was a confident person, but with my relapse I became afraid of my own shadow.


 

Name: Nicky
From: South Wales, but now Cheshire
I was diagnosed with benign MS in the 70's or 80s (I don't remember which), and mostly just use a stick but on very rare occasions I have to use my wheelie. I had 2 cats but one went walkabout earlier this year and so now only have 'Mozart'. Most of the time I try and ignore MS but the good thing that has come of it is that I have made some rather fine friends on JJUK. I have a variable taste in music, enjoy reading, family history research and thoroughly enjoy laughing with friends.


 

Name: Nicky
From: South Wales, but now Cheshire
I was diagnosed with benign MS in the 70's or 80s (I don't remember which), and mostly just use a stick but on very rare occasions I have to use my wheelie. I had 2 cats but one went walkabout earlier this year and so now only have 'Mozart'. Most of the time I try and ignore MS but the good thing that has come of it is that I have made some rather fine friends on JJUK. I have a variable taste in music, enjoy reading, family history research and thoroughly enjoy laughing with friends.


 

Name: Nigel
From: Swansea, South Wales
I'm 41 and recently separated. I have 3 children whom I see as often as possible. I was diagnosed in '04 but had problems before. I do my best to get around with a walking stick. I'm getting fitter and stronger after a period in a wheelchair after a nasty fall. I work full-time at a push but am looking for new opportunities, perhaps overseas. I enjoy football, culture, music, healthy living and having a good time.



Nigel

Name: Övgü
From: Istanbul, Turkey
I was born in 1975 and was diagnosed with RR MS in 1998. First I chose to ignore it and pretend that I did not have any disease. But MS kept warning, I had relapses many times. As a reporter I was working for a TV channel. I could no longer handle hard work and quit. Now I work as a freelance copywriter and try to keep my positive attitude. I suggest everyone with chronic diseases to keep a positive attitude and give a chance to your body for healing itself.



Ovgu

Name: Pam
From: Glasgow
I'm married to Adam. I was diagnosed in August '02 with progressive MS but am still working as an Operations Manager, with no intention of giving in (yet).


 

Name: Paul
From: Preston, Lancs
I'm known by most as Simmy. I was diagnosed primary progresive MS '97. It first started whilst at work in '92. I used to work as a Medical Equipment Service Engineer, servicing and installing oxygen concentrators for people with heart problems, emphorsemia, transplant patients, even premature babies. I was in the Royal Navy for five years '80-'85. I fought in the Falklands and South Georgia until I was discharged in '85 through diabetes. I used to enjoy a lot of motorcycling until they stopped my licence in 2000.



Simmy

Name: Peter
From: Fareham, Hampshire
I was diagnosed 'mild' RR MS, September '02, though I've had symptoms since '86. No major problems, just a numb hand and 'heavy' legs. I'm married to Ness and have a daughter who's 18, they are the joy of my life. I'm a Christian minister. Being Welsh I love Rugby but can't play it! I have a sad liking for 70s prog rock, bird watching, photography and motorbikes.


 

Name: Polly
From: South Yorkshire
I'm single. I was diagnosed 15 years ago and told in January 2003 that I don't have MS. There were no lesions on my MRI but I have physical symptoms. I can't walk far but am still driving. I'm no longer working, just enjoying the good days and hating the bad.


 

Name: Roy
From: Scotland
I've had RR MS since '89 and have been registered blind since '96. I've been on Avonex since '96. I work on a publicly appointed Government committee (DPTAC) that advises ministers on public transport issues regarding disabled people and access to the built environment for disabled people.



Roy

Name: Ruth
From: Edgeware, Middlesex
I'm happily married, no kids. 'Probable' diagnosis of RR MS in '81, then complete remission for 14 years when the MonSter tapped me on the shoulder again (actually more like hit me on the head with a hammer!). Have mostly suffered from permanent sight loss and sensory distortions. Although no longer allowed to drive, I'm still walking and still smiling! Hobbies: Playing bridge (with large print cards), enjoying my eccentric husband and friends, working with the blind and disabled teaching them to use a PC. Regular medication: Gabapentin plus vitamins. Due to start Avonex March '03.


 

Name: Samantha
From: North London
Diagnosed in '95. Have been fairly well albeit aching/painful legs. But last year I split up with my husband and moved house (two very stressful things) and seem to have got worse. I started on Copaxone in July '03 but had to stop that. Then started Avonex Nov '03. It's going well but I feel my mobility and sensation in my limbs is getting worse.



Samantha

Name: Sandra
From: Essex
I've been married to my university sweetheart(!) for 17 years and we have 4 lovely children, aged 12, 11, 9 and 5. I was diagnosed in October '03 with RR MS. I love reading, music, my ancient cat and my lovely little miniature schnauzer!


 

Name: Sara
From: Tamworth, Staffs
Born and bred a Yorkshire lass but now living in Tamworth. I work full-time as a Speech and Language therapist. I was diagnosed with in 1996. It mostly affects my legs. 'I may have got MS but it hasn't got me.'



Sara

Name: Sarah
From: Northampton
I've had MS for 18 years. I've been married to Tony for 8 years. We've been together for 17 years we have one daughter, Lizzie, aged 9. We have some strange pets: dogs, tarantulas and snakes. My MS affects my legs and my bladder mainly and I take a combination of drugs to help with this.


 

Name: Sarah
From: Fife
I'm 34, married, and have two small sons, aged three and one. I was diagnosed in '94, after severe optic neuritis which resulted in complete sight loss (fully recovered, thankfully), and another episode a few months later involving balance and loss of sensation. I currently take Gabapentin and Diclofenac for severe neuropathic/musculo-skeletal pain, and try to manage my fatigue as best I can - not easy with the boys! I'm starting a part-time college course this autumn and hoping to train as a complementary therapist eventually.


 

Name: Sarah
From: East Yorkshire
I was diagnosed with RRMS in 2004, which was really inconvenient because I was just starting the second year of my degree! I've now graduated and am hoping to find my dream job, working in animal welfare for a sympathetic employer who will understand that I'm occasionally a bit pants.



Sarah

Name: Shirley
From: Harrow, Middlesex
I was diagnosed in '95. I now have secondary progressive MS. I'm married, with a son of 26 (married) and daughter of 23. I take Prozac, Detrusitol and several vitamins. I'm still walking, but not very much.


 

Name: Simon
From: Puriton, Somerset
This picture is from June '02, I have new glasses now. I like to laugh and drink and have fun. I have Progressive MS which I've probably had for more than 20 years but was diagnosed 3 or 4 years ago. I don't remember exactly when because it's not that important because there's sod all I can do about it. I take LDN sometimes, I have GABA sometimes, I have Guiness always or maybe it's just a placebo.



Simon

Name: Steve
From: New Forest area
I was diagnosed with RR MS in Dec '94. Married with 2 adult children, son, 20 and daughter, 18. I work for a software company. Interests include most things, especially, listening, chatting and most importantly smiling.


 

Name: Sue
From: West Lancashire
I was diagnosed with relapsing remitting MS in June '96. I'm married, with 3 cats. I love Bacardi but it mustn't be drowned! I work full-time in a secondary school. I used to teach but am now a Learning Mentor for under-achievers.


 

Name: Suzan
From: East London
I'm married and we have a six-year-old daughter. I was diagnosed with relapsing remitting MS in 2004. My symptoms are mainly sensory. I'm a secretary. I've gone down the alternative path as opposed to conventional medicine as I feel I'm still in the early stages of MS and if I can find an alternative way to control it then all the better. I'm on a pretty strict diet, no wheat, dairy, sugar, yeast (the latter two because of Candida) and have lost a stone so its not all bad! I started taking LDN about 4 months ago. I suppose it's all trial and error. The main thing is I'm well in myself, and happy with life.


 

Name: Suzanne
From: Hemel Hempstead
I was diagnosed in '90 with relapsing remitting MS. I'm married with 2 children (girl 17, boy 12), a dog and a cat. I work part-time for my husband and a local film company. My hobbies include singing in a choir.


 

Name: Terl
From: Stamford
I was diagnosed with 'Chronic Progressive MS' (yes CPMS) over 10 years ago. I still walk (just) and drive. A sideeffect of MS or Amantadine that I take for the dreaded fatigue is that I only need 3-4 hours sleep at night, so I read, browse and type til the early morning. I hate bureaucrats and love writing letters and snotty emails to the faceless wonders and get them to change their rulings for other folk. I am an inveterate nit-picker and I love to get folk tied up in their own jobsworth rules! Full RAF and works pension. I now run my own company for Tax reasons doing what I want when I want at my pace. The original Mr Busybody... I'm on all sorts of things from War Pensions committee, to school Governors, access group, etc. Having relegated my wheelchair to the garage where it is getting dusty I try to show folk that even with MS one can still be useful to society.



Terl

Name: Tony
From: York
I'm a Church of England Vicar (but don't hold that against me) of a parish in York. I was born in Luton (of Airport fame) to a surprised mother ("I thought it was indigestion") in that golden year of 1957. I'm divorced with 2 children, 2 guinea pigs and 4 fish (I used to have a ferret but she lives with the ex now). I met and have got engaged to Lynne (aka 'The Chief Tart') through JJUK. I'm well travelled, having lived in Zambia for some years, where I got qualified in the rare skill of the artificial insemination of cows, although I've not practiced it of late (I wonder why?). I think myself lucky to have travelled Africa from North to South. I'm injecting Copaxone and feel like a pin cushion.



Tony

Name: Tony and partner Tracey
Tracey has relapsing remitting MS, diagnosed February '02, We both work for BT. N o kids. Tony is quite politically aware and an internet fiend and has turned this power on the battle for Beta Interferon. We are both involved with a local group www.aims-southampton.com: Active Information for MS. Tracey has been involved in a trial for aerobic exercise which has had very positive results. It consisted of cycling on exercise bikes building up to 30 minutes twice a week.


 

Name: Val
I'm 43 and divorced. I've got 2 children, a daughter who's 23 and a son of 17. I was diagnosed with MS in February '04. I'm still trying to come to terms with it. I love to write to other people and chat about all sorts of things. When I'm in work I'm a support assistant in my local hospital. I've worked there 10 years but I'm not sure if I'll be able to go back to it as there is a lot of walking to do.



Val


[MSers] [Family] [Fun] [Contact Jooly] [About Jooly] [Site Map]