Very well put Ollie.
My scooter means independence to me. Not a backward stage.
Anthony
(PS Happy Birthday to Mrs Ollie)
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Good evening, or perhaps, good morning, if you reading it then, orrr mibbeâs afternoon, if youâre a lazy git and lie in your pit till late,âŚperhaps I should say, good afternoon simplysassy54, can I call you simply, nae offence, Iâm no saying youâre simply, as in mind, just wondering if you go by first part of name, or do you answer to sassy, classy, or 54, mibbe thatâs your house number, anywayâŚwhatâs the question again, right, experience, right, first dated a lassie when I was 8, had a few over the years, started drinking at seventeen and a half, got married in 75, ohâŚright,âŚMS experience, was diagnosed in 97 (thatâs 1997, no 1897) age 45, had a few problems before then, put in down to getting a piece of flooring nailed to knee at work (am a joiner), got fobbed off by this department then another, final went to private physiotherapist who notice a problem right away, had a neurological friend, upshot, got various tests including lumber puncture then toldI had PPMS, nothing can be done and to enjoy life, I have done just that, finally packed up working in 05, wife went full time till she became my carer full time, had to moved from 5 apartment to ground floor two bedrooms, had everything down, ramp leading up to front door, kerb lowered and front garden monoblocked, wet floor installed, bought lightweight wheelchair, big mobility scooter, fold down scooter, for when in malls etc, powerchair for in house, canny walk more than two steps, only help weâve got is two handrails at front door, that comes due to cutting corners and making big bonuses on sites, have no help, financial or otherwise, from council, got less and less mobile over the years, and for the last couple, had unlined infections, and be in hospital every three months or so with bowel problems, but as is said, thought sh*t, just have to get on with it, I need to, auld Lizzie promised to send telegram in 35 years for my 100th, Brian
Hi Ollie, As Anthony said - âvery well putâ. Itâs great that your Wife has decided to get a Scooter as it will give her independence and will enable her (& you) to have more days like youâve both been able to have over the past few days. Iâm 46 and have had my Scooter for a couple of years now, I use a walking stick inside my home and when I go out but having my Scooter has enabled me to go to other places that I wouldnât of been able to otherwise. I was very self conscious about having it in the beginning but now I only see it as something positive. I donât use it all the time but itâs there when I need to. Take Care Twinkle Toes x
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Hi Ssssue!
First of all thank you for dropping in and giving yourself and time for me.
When you first found out did you know what type or kind of MS you have? Can it change?
Does anyone else in your family have it?
The only thing I can think of is my bout with Mono 20 years ago. Since itâs only been in the last few years, Iâd say five, absolute maximum, I am wondering does this lay dormant?
I am still waiting to hear back from the initial neurologist. I need more information!
I sound like a broken record, I know. Please be patient! Iâm addressing this to you, Sssue, and this is also open to all.
At this point I can still walk.
I can still work out on my elliptical for an hour or more, OK, an hour on a regular, almost daily basis as well as work out with weights. I offer this up as a comparative study between me and all the youâs!
Thanks again,
r
Hi
Well in 1997 when I had my first symptoms, I was tested and told âyou donât have MSâ. This was not true and I suspect the doctor knew very well that I did in fact have MS, since I had 2 lesions, tested positive on lumbar puncture and visual evoked potentials. I was given IV steroids and discharged from hospital where Iâd been an in patient for a week. I subsequently believed I was a medical mystery so stopped seeing the neurologist and just put up with relapses as they happened over the next 5 years (optic neuritis a couple of times, numb legs, spasms, falls).
Eventually I went back to see a neurologist and was asked âwhat do you think it is?â I answered MS, and the doctor said, âyes, so do Iâ.
At that point it was very clear that it was relapsing remitting MS. This is typified by relapses of new or repeated symptoms which over a period of weeks or months remit, either partially or completely. Since 2002 (in the U.K.) disease modifying drugs (DMDs) have been available to reduce the severity and number of relapses. Which was handy because that was the year I was ultimately diagnosed. Unfortunately they either didnât work or gave me serious side effects, which is why Iâve not been able to take them.
If you are offered DMDs, Iâd suggest taking one, have a look at MS Decisions aid | MS Trust This site lists all the DMDs that are available in the U.K., it may be different in Canada. It sounds like you are only slightly affected by MS at present, taking a DMD is like an insurance policy for if you do have a nasty relapse. They are the best bet for staying mobile. My experience with DMDs is not typical, most people are able to take the drugs.
Nobody else in my family has MS, although my family is plagued by autoimmune diseases. Between us there are several with over active thyroid, and several with psoriasis, one with severe coeliac disease and one with ME. There does seem to be a link with MS and the Epstein-Barr Virus. This is what causes Mono, or as itâs known in the U.K., glandular fever. It doesnât mean that everyone who gets EBV also develops MS, or that everyone with MS also had EBV. (I didnât, although one of my brothers did, he developed ME.) It just means that many people with MS also have the antibodies for EBV. Just like with a family connection, there are small contributory factors that may influence whether a person gets MS. Another contributory factor is gender, you are more likely to get MS if you are female. Another is geographical location, Canada has one of the highest numbers of MS sufferers per capita in the world. In fact the further you go from the equator, the more likely you are to get MS.
My MS was finally labelled as having changed to be secondary progressive a couple of years ago. This means that I no longer have relapses and remission. In fact although any changes from here on are likely to be permanent, there have been no real changes in that time, so I feel that my progression is likely to be slow.
I would definitely keep up the exercising as that will help enormously in years to come. The stronger your muscles are, the better.
For more information about MS, including the various types of MS, and information about drug therapies, have a look at the tab at the top of the page marked âAbout MSâ.
Sue
Hi Fay, i,m new to this ? do you get prior warning when you have a bad relaps, Rgds Keith.
Hello Keith,
I am SPMS now but when I had RRMS I noticed it followed about 10 days after having an infection of some kind.
The relapse built getting progressively worse over about three weeks and tended to be seasonal - winter, spring. summer.
I am 50yrs and wheelchair bound now used to be able to drive and everything but now no itâs awful
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I used to be a social worker and had a lady who was 80 she was able to use a walker she had MS. Stay positive.
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