Hello all msers im new to here
I have ppms 5 year’s diagnosed but already progressed to being a full time wheelchair user! :roll_eyes:I am struggling with the rate of progression hence why I’m here seeking other ppms stories to help me with this.
Normally a glass half full type I am definitely glass half empty currently… Sorry but true!!

Hi there. Welcome to the place you never wanted to be! I have SPMS, I got the wheelchair about 10yrs ago and, like you, was glass half full person. Now it switches on a pin head but I’ve learned to fight the down times, accept the down times and enjoy the good times all the more. You’ll be able to as well. I’ve tried to stay away from platitudes. Have a good weekend🥃

I’m waffling between RRMS & SPMS right now, but welcome to the forum! We have a number of wheelchair users who will be responding to you, but sometimes this site isn’t as active as it used to be, so it may take a while.

Hi love the handle Cruella lol.

depends why you progressed so fast how long were you sick prior to being diagnosed. PPMS by all accounts is supposed to be slower pacing.

quote from MS trust.
The rate at which progression occurs varies widely between individuals. At times it may be at a standstill, or it may even improve very slightly for a short period. For others the progression is more rapid. However, onset is typically slow with symptoms steadily increasing over a period of months or years

Could it be you have had it a long time without even being aware. I look back i am sure mine started not long after my father died in 1997. I know i had weird things going on from about 2018 as i used to tell my friend about them, and my bladder was on fire. 2000 the first big symptom blind/eyesight off.

then 2000 went quieter until 2006 boom lol. then slowly over time bit by bit the edge of my cliff was sloly eroding. I am about over 7 on the EDSS. I could easiliy use my wheelchair in the house but refuse to do it. I will drag my sorry backside if i have too. I know once i put my bum on that seat i will be in it for good.

Even my neuro agreed with me.

I wonder sometimes if the neurologists understand PPMS its quite rare. I know a few PPMS who are still walking and on their feet after years.

I have to use wheelchair out though i cant walk far not at all.

When the neuro told me i had PROGRESSIVE MS, he didnt say you have PRIMARY progressive MS which scared the pants off me lol. He even dictated PROGRESSIVE MS.

One thing i do is use my brain more i am doing a newsletter for my sheltered accommodation, i have a youtube channel, i run 2 chicken groups. WE all have stories all different, we all cope differently too.

Sometimes I feel like giving up for sure like yesterday. Just didnt want to do it anymore. Then one of my old guys i talk to here i saw him yesterday and he is deteriorating in his mind he is ex navy still walks 88 years old, and I felt so sad for him and his wife. He sees the specialist on Monday about it, and i thought to myself jeez what have i got to worry about i would rather struggle with my walking then loose my mind anyday.

So back on the writing and designing my newsletter lol. xxxx

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Thank you crazy _chick Ms life does take so much… Brain power - & losing it scares me enough to realise I feel quality over quantity… Now applies to me…i put me as 8 edss rapid progression (possibly) I was walking unaided to Dr’s before 2016 I no longer walk, drive and enforced dependence is an important part of my ms stuff added into mix bladder Bowels and menopause makes life challenging to say the least
I am 54 years young please can I know what is your YouTube channel even though technology is really not my thing I’m interested

Thank you for your friendly reply and I will be looking to this site seeing as we are all in the MS club together even though we have not chosen it.

Thank you for your reply & kind words. I was probably to
Busy before diagnosis if I was unwell it would of been subtle enough not to take any notice… A personal pet theory of my own is trauma did you have it in your life if that’s not too personal a question?
Positives i have yet still negativity is overwhelming and I feel an emotional wreck currently… Oh yes I am an early bird too.

Are you on HRT for menopause? I have cervical dystonia, a neurological condition, and also something else neurological going on, which i’m still waiting on a diagnosis. HRT made a huge difference to me. I’m on bioidentical hormones - estradiol applied to the skin daily, and progestrone capsule. Both estrogen and progesterone are neuroprotective. Maybe something to talk to your doctor about if not already on HRT. The view on it’s safety has changed dramatically in the few years as old very flawed research has been replaced by new far better research.

Thank goodness for your positivity it has given me the oomph to get a grip. There are lots of positives in my life I think I was having my own pity party for one
forgetting there are loads of us people in the MS club unfortunately not anybodies choice either. I have renewed interest in dealing with the challenges of MS and again thankyou :wave::crossed_fingers::muscle::sun_with_face::sunflower::coffee:

hi its a lot of hedghogs, birds, and some foxes. I love wildlife. xx

When I was still playing squash and my MS joined in, I could see the ball OK but lost sight of my opponent and kept crashing in to him. I no longer drove after squash as my eyesight turned into highly focused tunnel vision when I got super heated and only normalised an hour or so after a cool shower. We did have some laughs. Sky diving and rally driving sound like a blast but having legs waxed sounds too crazy for me. I am with you on the defiance angle, to quote a hero of mine (Talan) "why should being disabled stop you from doing what you want ? "
His charity puts seriously disabled people back on motorcycles again. Still one of the biggest grins of my life. Talan Skeels-Piggins - Wikipedia

The Bike Experience. Talan Skeels-Piggins interview - YouTube

(1) The Bike Experience | Facebook

If you like a challenge and a laugh this is a great place to go.

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Thank you for your reply this site & users remind me of the battle every Mser faces.
with renewed positivity I go forward in my quest.
Thankyou once again I have found a place to vent and conquer my negative attitude., take care and stay safe keep strong

Thank you so much for the reply and the positives I will be looking into it with a renewed sense of humour and my value as a person albeit with MS I think I will be looking to this site more often especially when I am struggling kind wishes

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No trauma just life itself like most people.

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