Hello Blackhill, congratulations on getting a ground floor house! 
. I hope this will make life easier for you.
The MS day sounds interesting. I hope many show up and people become informed on what MS is.
I am doing well thanks.
I can now dance on my feet again without holding on! This has been a great victory for me this year. I now practice every day.
I also suffer from Functional Neurological Disorder, ( non epileptic seizures) which I am learning to control but the other day it was very frequent and by night time it was worse. Breathing becomes slower and I feel paralysed so canāt breath properly and also had disorientation . Like a weird amnesia. Exhaustion brought it on.
I was alone. But managed to get to bed safely and slept it off.
Iāve asked my GP to ask my consultant to refer me to the FND specialist at my MS clinic.
Today was just one seizure.
All the best with your move and enjoy Saturday.
Crystalš»
Hi .
I was diagnosed 9 years ago and can relate to the āWho am Iā. I went from a reasonably intelligent professional, independent single mother to medically retired, doped up on painkillers and often reliant on my 15 year old daughter. Sound familiar anyone?
Years later Iām still unemployable, the painkillers no longer make me dopey unless I need a top up, but i live on my own employing help for things I canāt do.
I found a hobby, in my case sewing and try to concentrate on what I can do instead of what I canāt. Oh I still get frustrated and swear and cuss, usually at myself, but I get over it eventually reminding myself that there are a lot of people worse off than me.
The good days far outweigh the bad.
Take care
Cath x
Thank you for this honest assessment of the struggles of a chronic, progressive condition. 3 weeks ago I officially found out about my MS; at first it was a relief (not a lazy, anxious, hypochondriac after all).
Iām a doer rushing headlong into bath replacement, looking for a Fiat Dablo, joined āShop Mobilityā ā¦ bonkers: all a reaction to fear and dread of the future.
Who am I? You are someone doing their best to deal with lifeās randomness. (removed by moderator).happens. Sending solidarity. Trish
Hi Trish
Sorry I have only just seen your post wobblyMa could well be wobblyus! I was diagnosed Oct 2007 with ppms, positive nature helps BUT not every day. Some days suck with bells on, today is one of those days but wanted to welcome you and give you a ālikeā a wee pink heart next to reply.
Take care, be safe and make the best of the good days. M x
Hi, you have described exactly how I feelā¦
I miss the old me - and heās never coming back. I used to be fit, strong, healthy. Never drank, smoked, or taken drugs.
Yet here I am, in my 50s, diagnosed with PPMS a year or so ago, with terrible balance, weakness, almost permanent fatigue, lacking some of my former cognitive abilities, and just so damn angry about it.
I know some have it worse, but really, that is of no comfort. To be honest, there are days when I wonder āwhat is the point?ā.
I guess the point I want to make is this: youāre not alone. MS really is a wretched disease. There are people here that understand that, so venting is better because people āget itā - you can look ok, but youāre really not.
I completely get the ānot being OKā Venting is useful, but try not to waste time and valuable energy being angry. In my opinion the energy is more usefully used in having the best time I can. As for āwhatās the point?ā (I have been there) I think that as life can be pretty short it is worth making the most of it. I also recognise that I have only a vague idea of how you are feeling, so please ignore my comments if they are not appropriate.
Mick
You look at your
āHavesā not your āhave nots ā . I have been doing it for 30 years- it works. Another thing/ always wear your makeup- even if itās only lippy.
Eyebrows for me, not that they are very evenly drawn these days 
.
My other go to is smelling good, so a squirt of my favourite perfume each day is a good pick me up.
Of course I am more than these things but they are a good part of who I am.
Hello there. I read your post with interest and complete empathy. I was diagnosed in one weekend! Complete right side paralysis overnight, ambulance, admitted, tests and diagnosis. I recovered well and ignored my fears. Two years later I became wheelchair dependent, and with all the other shite that came with it.
I posted this piece last year. You might identity with Poppyā¦
THE MIRROR.
"Poppy is 55. She has glossy dark hair and twinkling eyes that smile. Everyone tells her she looks like a woman ten years younger. This pleases her as thatās exactly how she feels.
She awoke and cast aside the duvet, stretching her arms high above her head and arched her back, as agile as a cat, before placing her feet on the ground and walking to the bathroom to brush her teeth. What will she do today? Work in the garden, which is demanding attention, or perhaps go walking along the local shingle beach? Or maybe she will jump in her car and indulge in a little retail therapy and enjoy a coffee and a luscious cake in a local bakery. She smiled at the prospect of the lovely day ahead. She loaded the toothbrush and looked in the mirrorā¦
There is a 61 year old woman who has a weary look etched on her face looking back at her.
Her tousled, tinted hair is short. Easier to manage. There are lines etched around her eyes. Who is this?! Poppy doesnāt recognise her.
She is clinging to the grab rail at the side of the sink in her disability adapted wet room. Her stiff and clumsy right hand struggles to hold the toothbrush and stop it falling. She fails and it drops noisely into the sink.
She canāt stand steady anymore and has to flop down into the motorised wheelchair that is behind her. There will be a lady coming to help her with showering and dressing shortly. After that the day will entail a little reading, emailing, a snooze in the recliner chair and sitting in the lovely sunroom, planning what she will be asking the gardener to do with the overgrown flower beds when he comes. He isnāt actually a gardener as such. Heās a very sweet older gentleman that likes to be of help to her and she is glad of the interlude in her uneventful day.
The six years since Poppy was diagnosed with Ms have gone quickly and the progression swift and relentless, but Poppy is still here, just in a different guise.
Who do you see in the mirror?"
SPMS here and Iām having the same problems with thisā¦Icall itā¦ Lady MS.
Iām romanian. Doesnāt matherā¦
I wake up in the morning, ready for work, I try to get up from the bedā¦ I canātā¦ second attemptā¦ nahā¦ I take a look on my rightā¦ there are my wife and my 5 yo daughter sleeping. And I say in my mindā¦āI need to go to work for them to have a nice sleepā ā¦ I manage to get upā¦
So that is a typical moment in a typical dayā¦ you can imagine the rest of the day but Iāve learned that in every moment you need to find the strenght, reason and trust.
God bless you all!
My goodness Poppy what a beautiful post, thank you.
I see a 66 year old woman who needs her hair cut and maybe a few highlights! If you see me seated no-one would think anything was wrong. Mobility and balance are my problems but M is still there with a twinkle.
Take care be safe and grab every day you are able. M
Hello there. I read your post with interest and complete empathy. I was diagnosed in one weekend! Complete right side paralysis overnight, ambulance, admitted, tests and diagnosis. I recovered well and ignored my fears. Two years later I became wheelchair dependent, and with all the other shite that came with it.
I posted this piece last year. You might identity with Poppyā¦
THE MIRROR.
"Poppy is 55. She has glossy dark hair and twinkling eyes that smile. Everyone tells her she looks like a woman ten years younger. This pleases her as thatās exactly how she feels.
She awoke and cast aside the duvet, stretching her arms high above her head and arched her back, as agile as a cat, before placing her feet on the ground and walking to the bathroom to brush her teeth. What will she do today? Work in the garden, which is demanding attention, or perhaps go walking along the local shingle beach? Or maybe she will jump in her car and indulge in a little retail therapy and enjoy a coffee and a luscious cake in a local bakery. She smiled at the prospect of the lovely day ahead. She loaded the toothbrush and looked in the mirrorā¦
There is a 61 year old woman who has a weary look etched on her face looking back at her.
Her tousled, tinted hair is short. Easier to manage. There are lines etched around her eyes. Who is this?! Poppy doesnāt recognise her.
She is clinging to the grab rail at the side of the sink in her disability adapted wet room. Her stiff and clumsy right hand struggles to hold the toothbrush and stop it falling. She fails and it drops noisely into the sink.
She canāt stand steady anymore and has to flop down into the motorised wheelchair that is behind her. There will be a lady coming to help her with showering and dressing shortly. After that the day will entail a little reading, emailing, a snooze in the recliner chair and sitting in the lovely sunroom, planning what she will be asking the gardener to do with the overgrown flower beds when he comes. He isnāt actually a gardener as such. Heās a very sweet older gentleman that likes to be of help to her and she is glad of the interlude in her uneventful day.
The six years since Poppy was diagnosed with Ms have gone quickly and the progression swift and relentless, but Poppy is still here, just in a different guise.
Who do you see in the mirror?"
[/quote]
Hi PBMS,
I too am a believer. I still find I get down and struggle but then I remind myself of all the positives & truths that surround me. The Lord has been and always will stay with those who love Him. We can never out - love Him, he is our help and closer than a brother.
I have never found the āthere are some people even worse offā a comfort. My mum would never tell us to eat-up 'cos children are starving in some places (She knew thinking about the suffering of others would not improve our appetite!
I was with PPMS in 2008 diagnosed. Because I have more than 5 lesions at various levels in my brain they are now checking my bloods for a notch 3 gene deficiency, Apparently 90% of people with CADASIL have this notch 3 gene problem. On the 16th Feb 2022 my 32 year old son reported me to the police for supposedly assaulting my wife, Since the 28th May 2022. I have been in a care home after my wife abandoning me after being my full time carer for 25yrs. Doesnāt life suck
I wonder what took her so long?
Iāve recently joined the club PPMS. Yes as you all know itās a nightmare, that I still canāt believe. What I would like to know if anyone knows of anywhere I can go/volunteer for testing on any new miracle treatments or products ? ?
Thanks and good luck to All.
https://www.clinicaltrials.gov/ is an American site but many of the trials roll out across the world.
Iām also PPMS and trying to get onto one at the moment.
- Look up Gavotte Multiple Sclerosis trial being run by Roche. It explores differing doses of Ocrelizumab and the relative effect.
- Look up Ohand study
- Look up Fenebrutinib compared to Ocrelizumab. Another trial comparing the already-licenced Ocrelizumab with new BTKi drug Fenebrutinib, also being run by Roche.
Need to check out the qualifying criteria. One of them was max age 55 and Iām 60.
Graeme
Hi Blackhill
I feel your pain. Life is a bitch and than we die. When you āthinkā you feel hungry rush your teethā¦ I had to give you a 2023 post to update you:) I donāt access this board as much I use too.
Try and give a 6-8 hour gap between eating, you could probably manage longer if you include your sleep time. Does that make sense? Sending you love and positive vibes. M x
It obviously was BRUSH your teeth!!! 
M x