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Hi.

Hi all. As you can probably tell, I'm new to this! I thought I'd just pop in and say hello. I'm 44 and was diagnosed with PPMS about 5 weeks ago, and now that things have sunk in a bit, it's time to start making the best of what's going on. I've been popping in and out of here for a couple of weeks to see how things work, and you all look like a happy, positive bunch, so it looks like I'll be here for the long haul!

Looking forward to plenty of chats, I'll probably shed a few tears but hopefully lots of positivity shared around.

Hi Anna, welcome to our little gang!!! Lovely to see you on here. happy2

Yes, takes some time to get used to the dx... but you'll get there. 5 weeks isn't very long at all so expect the whole rollercoaster of emotions... including relief (some people feel guilty about feeling that... so I mention it in case you do... but it's quite normal... I mean it's much better to know what you've got and there are worse things to be dx with). Give yourself loads of time to get your head round it.

As you have no doubt now realised, PPMS is NOT the end of the world. It means some changes, and more changes as you go along, and different plans than you might have set out with, but life does go on and it still has it's joys and sorrows that have nothing to do with MS. 

If you have any questions come on here and ask them. Some of us know more about PPMS than the neurologists... certainly more about symptoms and how to cope with them. We've been through the ups and downs so understand what you're going through.

And there are some little 'ups' believe it or not. That thing about having to make changes and not having the same future as planned isn't all bad. MS can teach the value of living 'one day at a time' and enjoying the small stuff...  good things to learn.

Take care and so glad to have you on board.

Pat x

Hi Anna,

I was diagnosed about 5 months ago, so I know how you’re feeling atm. Relief as Pat said because you have a name for the MonSter but also sadness because you’re no longer the person you thought you were. Have a look at ‘the five stages of grief’ on google as these stages are exactly what you go through, maybe not all of them but most of them.

Take things a day at a time, give yourself plenty of time to get used to the diagnosis. Pat is right, this is not the end of the world and you can still have a happy life.

Take care of yourself and stay in touch, we are all happy to be chatted to, moaned at, ranted at, whatever!

Teresa xx

Hi Anna. I've posted this advice before so starting to sound like a parrot on this forum! But I hope it helps.

  • 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.

I'm lucky enough to have both an Occupational Therapist and MS Nurse who've visited me at home in last few months.

 

Thanks for all the wonderful support. It's so good to know that there really are others out there going through the same, and are able to share experiences and offer advice.

I haven't had the chance to get involved with local groups yet, but will be visiting an exercise group next week (me and exercise - we haven't met up for ages!!!), and a I spoke to a lovely lady yesterday who runs a local support group - it sounds like they're "ladies/gents who do lunch"

Pat - you are so right about the feeling of relief, but when I tell people that, they think I've lost it completely until I explain that it could have been so much worse and after a long time waiting to find out, I can now try to carry on with my life. The rollercoaster.......I never was one for scary rides, but by gum this one takes the biscuit!

Teresa - haven't had chance to look on Google as yet, but I will do (I promise!)

Colin - thanks for the sound advice - the voice of reason!

Anna. x

Hi Anna,

Welcome to our little club.

PPMS is a 'wonderful' world of mystery - no one knows.  Alice in Wonderland doesn't even begin to explain how our life works,

You will become the expert on your PPMS!  It is specific to you and no-one seems to have exactly the same experience/symptoms - as you live with it the most, hence your expertise.

Treat yourself kindly, give yourself time - do not try to do too much at one time the MS doesn't like it!  Use your daily/hourly quota of energy with due reverence and spend it wisely. it is more valuable than gold.

My best advise is do a bit and rest a bit, that way you do get there eventually and with patience can live a fairly 'normal' life.

Luv Ann

Hi Anna
Welcome to this forum, we PPMS lot are few and far between as you can see by how many people post on here. It’s great to have you to chat to and share experiences. I also felt relieved when I was told my diagnosis in September 1996, just as my 9 year old daughter was going back to school after the summer holidays. I remember trying to look interested as she told my about her first day in a new class, but all I could think about was how I was going to tell the kids.
Well she is now 25 and I managed to tell them (I’ve got 2 older daughters as well) and I got some booklets for them to read off the ms nurse. They took it well and are very helpful and caring young women now. I better stop here before I start to cry lol. Keep well.

Lynne xx

i Anna

 

I was also diagnosed at 44 all of eight years ago take or leave a few days was diagnosed on the 25th may. Anyway it isn't the end of the world you will just take a different path I have found this site useful and also local MS organisations. Welcome to the select club and it isn't as scary as you may think you can post your issues hear and chances are most of us have wore the tee shirt

take care

good day Anna, I have just popped on and read your post, first off, welcome, anyone can get MS, but we are the chosen ones of MS, we are in a special group, we have PPMS yessssss, hope to be in contact over the peace, my name is Brian born and bred here in Scotland, now a enforced retired joiner. Most folk on here are of a positive nature, why be otherwise, brian

Hello Anna, you made me laugh and think! I absolutely hate roller coasters but I guess we are riding one of the scariest 24/7!!!!  the ones at the theme parks are a doddle!!!! I'll show my kids what im made of from now on! xxx