Forum

Having Multiple Sclerosis

I was diagnosed with Multiple Sclerosis in October 2007 – I later found out I have Primary Progressive Multiple Sclerosis. I continued working for Richmond Fellowship until the last week of January 2008 (in the London Borough of Barnet), and then I took three weeks sick leave in February 2008 before sending a letter of resignation to my boss (I worked as Administrator for Richmond Fellowship from October 2000 to March 2008, including four weeks leaving notice). I decided to move from a first floor flat to a ground floor flat in February 2009, as I also started to find it difficult to use the staircase.

Here’s a brief summary of how my life has changed since 2009

  • Buying a four wheeled trolley to hold onto when I walk indoors.
  • Using a four wheeled walking frame (or walking stick) when I walk outdoors (usually less than 200 metres).
  • Using a foldable wheelchair (usually when I need to travel more than 200 metres).
  • Hospital transport picks me up and takes me home (for hospital appointments).
  • Take mini-cabs to everywhere else I go.
  • Doing weekly shopping online with Asda and Tesco (grocery shopping) - driver brings shopping bags into the kitchen.
  • Somebody does hoovering and mopping, plus sweeps the back garden and driveway.
  • Landlord arranges for gardening (removing weeds) to be done.

Although I had three days of Methylprednisolone treatment in August 2009, plus Mitoxantrone Therapy in January 2010 and April 2010 (Mitoxantrone Therapy is meant to slow down the progression of Multiple Sclerosis, as there’s no cure for MS), my condition hasn’t improved. I do fear that my mobility will worsen even further in the next few years, but for now I don’t need much support indoors (well, it’s only cleaning) so in that sense I am lucky (compared to others with MS) – I have weekly shopping and medication delivered to my home address whenever I need it, which I’m grateful for – there’s some people in the UK who don’t have the support I’ve received (generally speaking), let alone other parts of the world.

  • With people who have Multiple Sclerosis or Lupus and have difficulties with their mobility, they can use crutches to walk (or a walking stick). Outdoors, they can also use a four wheeled walking frame. Indoors, a four wheeled trolley can be used. Contact your local council (e.g. Social Services) to ask if you can get any of these items free of charge.
  • The NHS Wheelchair Service can provide wheelchairs free of charge, and someone will visit your home address once a year to check the wheelchair. You need to be referred by your GP to the NHS Wheelchair Service.
  • For hospital appointments, some hospitals will provide transport (ambulance or car) where they pick you up and take you back home, so call the hospital or your GP to arrange this (it’s likely your mobility will be assessed with a few questions before transport is booked).
  • Occupational Therapists can arrange for grab rails to be fitted for the bath, or to give you a bath board to sit on.
  • As for essential gardening (e.g. removing weeds), if your landlord is council or housing association they should do this for you.

Hi Colin, welcome to the board!

I was dx in April 2008. Now I use a mobility scooter outside and stick or walker indoors… although in my flat I can usually get around ok without support. Like you, I use the internet for most of my shopping, I have grab rails as I live in sheltered housing (which I moved into 2 years ago as couldn’t manage where I was living any more), and recently the local authority put a level-access shower in for me.

I used to work in social housing as a special projects officer (basically working on politically sensitive regeneration projects).

Anyway it’s good to see you on here. It’s great for advice and for the support and friendship from other PPMSers.

Take care and thanks for some good advice on resources.

Pat x

Hi Colin and everyone else

First time for me posting on the new boards!

I just want to let any newly dx ppmsers know that everyone’s progression is different and your experience may be completely different from others you read here.

I’m one of the luckier ones. I got my first symptoms in July 2009, diagnosed in April 2010 and have only had very slight progression from the orignal symptoms. I walk without a stick (except in the dark or when’s it’s snowy or uneven) although I can’t walk fast or far my gait is pretty normal. I work full time and drive a car, though I did change to an automatic as my left leg got very painful using the clutch.

My sypmtoms are mainly sensory and although constant and from my waist down and in my hands, they are mild, some numbness and a pins and needles type feeling. I do get tried more quickly and by Friday night I am ready for a good 12 hour sleep. As long as I pace myself and eat regulary I cope fine.

I also do most of my shopping online as I cannot walk for long round shops, but to be honest I’ve never enjoyed shopping and was doing a lot of shopping online anyway.

Don’t want to sound smug and I realise I may not always be so lucky, I also know (hope) that I may not progress any further.

Best wishes to all - Juniper xx

I used to post here a fair bit but it was that long ago that my account seems to have been deleted so I’ve set it up again.

I was diagnosed in 2006 and, after a spell of using walking stick and wheelchair, I managed to get my self back to a state where I could walk without aids.

Sadly this was but a temporary thing and progression has kicked in. I now end up in pain just from walking a few hundred yards with a stick. I am now having a trial with crutches. I also wake up every morning with violent & painful spasms.

Employment is a bit of a sore spot with me. In 2007, I was advised by my MS Nurse and Occupational Therapist that working from home was a good way to cope with fatigue and a letter was written to my employer (Dixons Group). I was allowed to work from home for 2 days a week but my line manager made it clear that she wasn’t a fan, going as far as to say that she didn’t feel in control. In 2008, I was manipulated into redundancy in a way that was obviously discriminary (confirmed by healthcare professionals) but was advised that it was very hard to prove and that it wouldn’t be to my advantage. Regret to this day that I took that advice. After 3 years of looking, I finally found a “permanent” job last year and I take solice in the fact that I am still able to work full time and earn a living.

Hi All

My name is craig i got told i had MS on the 24th November 2013. I am now at the need help stage. i have tried to carry on as normal but as you all know you can’t. I now use a trolly to walk a scooter for outside having trouble now with work. i live in St Annes and have an appontment in Preston i dont drive, and i came on here looking how to go about getting transport. thank you

Hi Craig

Welcome to the forum, I am sorry to hear things are difficult for you.

It would be worth ringing the hospital where you have the appointment at and request hospital transport to get to and from the appointment. That’s what happens at our local hospital, so hopefully this will be the same for yours.

Hope this helps

Pam x

Hi Pam

I will do thank you for your help