The importance of earnest Independence

Primary progressive MS
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Hi folks, Are you sitting comfortably? I’ve not been here for months but have great news. I doubt you recall how low I was, fed up of the Neuro dept, consultant & m.s.nurse. Well my friends, as some of you suggested, I saw my g.p & told him how ignored I felt by the hospital.

Well, my doc got on the case & referred me to a new consultant (who happens to be a recognised leader in his field of Neuro & specifically M.S at a different hospital. After a very thorough examination, he confirmed PPMS but went on to say even though no dmd’s or meds, that he will ensure my quality of life WILL BE MANAGED. The MS nurse runs a team & she was awarded an honour plus the Neuro outpatient dept won a Centre of Excellence Award. She saw me 8 days after the Neuro confirmed the contrast MRI showed some deterioration & this will be checked every year!

Then the MS nurse told me to apply for a home assessment via Soc.Services, invited me to one of her regular information classes, arranged for the continence service to contact me and gave a host of helpful info & support.

I felt, at last, someone is recognising my plight & doing something about the clear negligence of the other hospital.

So ok, it could be a bleak future but I actually feel great now I am with the right health services. No more moans or feel sorry for myself (though of course there could be a blip).

DVLA revoked my licence cos of MS so I use a boot scooter, but rely on a driver lifting it in their car. My wheelchair has limitations of needing someone to push it, it’s fab in flat floor Shopping Centres.

Since seeing the new Neuro & ME Nurse, I’ve become positive & get on with Multiple t, achieving as much independence as I can. This week I have bought a fab Power Chair & a law was passed last year that I cannot be refused to use the bus & train services. I can use footpaths with ease, travel up to a distance of up to 22miles (doubtful) with a max speeds of 4mph.

This week I’ve caught 2 buses & MANAGED to steer into the disabled bay via a ramp from the bus platform. The drivers were very very helpful & polite. Now I can ride my Power Chair to a nearest bus stop to catch a bus to the Railway station, ask the rail staff to use their ramps for me to get on the train! They cannot refuse me access & obliged to provide a ramp!

I’m so sorry for such a long read but I’m jumping for joy…virtually, and want to shout Freedom and Independence from the rooftops.

Sorry again for lots of writing, I wish you all well & hope you can recognise my joy…After all, it’s this forum that started my taking action. Thank you xxx

Chrissie x

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Well, Chrissie.

It’s brilliant to hear all this good news. Like you, I have a power chair and use public transport. I’ve been from my small town in East Sussex to both Liverpool and the Isle of Wight. (Twice) My bathroom has been converted and I have near full independence. In fact I’ve written full accounts on many things I can now do. They’re all here if you want to see some.

Best wishes, Steve.

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Very uplifting to read Chrissie. Happy for you!

What boot scooter do you have please?

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Gld to hear your Dr got behind you and started things moving in the right direction for you

Sonia x

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Brilliant news Chrissy I’m so pleased for you I don’t know where I’d be withour my power chair and of course Frazer. Michelle x

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Thanks for joining in with my joy.

Steve, I read your articles from the start & I’m now up to mid-August. Fascinating, enjoyable, funny. I’m a fan, thanks for creating it.

Poppy, it’s an Invacare Lynx Boot Scooter that only cost £480 new and no VAT. The Lynx style has discontinued now but lots of other styles. I chose it after a 15 minute trial.

Cheers Sonia x, you were one of those who made me take action.

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Wow Chrissie!

I’m so pleased for you with all that new info a d help.

Good for you for taking to the streets in your new transport.

This is a brilliant post which should bring renewed positivity to anyone reading this, who is thinking of getting out about more!

Well done you!!!

Pollx

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Cheers Poll, you were also one of this group to get me out of the doldrums. What would we do without this fab forum for help and great support.

Today, I rode my new powerchair to a bus stop, it arrived on time & I zipped onto the electric ramp the bus driver activated. Just seconds to position into disabled bay, and we’re off. Many texts to & from hubby giving updates of my bearings & safety Spent 2 hours in Congleton feeling FAB & then a bus back. I honestly see humanity at its best, friendly people, smiles aplenty and actually feel 20 years younger …as if!

Sorry to keep sharing my celebrations in such an exuberant manner, I’ve been so dependent on others for so long & spent time alone just thinking of how I was before MS took so much. Yet now I’ve got options and freedom & I can’t stress the pure joy of travelling alone for as long as I want to. Maybe this week I’ll catch a train!!

PPMS, as we know, really is the pits so isn’t it fab when we can challenge the MS monster & put it in it’s place.

Chrissie x

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Very very pleased for you. The world is open to you again. Keep posting, it is very uplifting. Anne x

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I’m so pleased for you Chrissy, its always inspiring to read about other peoples adventures in the powerchair its made a massive difference to me, I cant walk, cant drive but what fantastic time i’m having now iv’e embraced my new life…yeah i still have bad days but my chair plus Frazer my assistance dog has opened up a new world for me…I was only thinking the other day as i was joining in with all the friendly banter on the bus, id have missed all of this so yes although i hate the illness i am enjoying my new life with new adventures like someone else said on here recently…its not giving up its acceptance and along with that comes hope.

I’m at my best trundling through all of the autumn leaves with Frazer and armed with a big dome shape clear umbrella , which I can see through and it completely covers me when it rains and also my trusty hot water bottle and tartan blanket.

Michelle and Frazer xx

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Its like the man said, when youre given lemons, you make lemonade!

True!

pollx

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