John Connor
Forum Replies Created
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Yes. During corny films that somehow get me. Darn it!
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Hi Patrick, my wife sufferes from claustrophobia. It’s got worse recently and she tried cognitive therapy which seemed to help.
Me – I’d rather smoke a joint.
I’m the worst person to ask – I’ve had 20-30 since my diagnosis in 2009. So used to them, I keep falling into a deep sleep – they can’t wake me up from.
Cheers John -
Hi Jilly,
Thanx for replying.
I’d find a day like that shattering.
Still u do live in the most wonderful country I’ve ever visited.
Re the lift – that’s nothing. My teenage son used to revel in pushing
me into a corner – when travelling thru airports. It cheered him up.
He did enjoy the preferential treatment of boarding first though.
Cheers John -
Hi Jilly,
This is a new one – the wonders of MS r unceasing!
Luckily can no longer do anything but lie on my back! Which up to now have always found a tad unlucky.
Have read that all wheelchair using people still walk in their dreams, even the ones who’ve been that way since birth.
Besides your Neuro as Ed suggests, maybe an Occupational Therapist might be able to help. There might be a specialist type of equipment /bed perhaps?
Cheers John
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No go at all by any of my Dr’s in the UK even though it became quasi-legal a couple of years ago. None of their various hospitals allow it. Even Sativex which is totally legal – though in this case none will fund it.
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Thank u v. much Sammy. Had done a lot of noodling about on the net & only fished up Coke bottles.
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Well, there’s v. little of me to still move. Except typing with my left hand!
Just got back from specialist MS exercise facility did 1.8km in 10 mins on the bike. One that u use from u’re wheelchair and 1/2 a an hour in the standing frame.
Palaver to get there as now my wife has to drive me.
Do what I can on my ownsome with v. old exercise plan – thinking of getting private MS physio. -
Hi Roy,
Good ethics for anybody live by. Most people don’t have a v. poss time-bomb in their body. So really do today what u might have put off till tmr.
Cheers John -
Ooh, my motto is ‘Do what you can, whilst you can’.
I was well aware that MS could put me in a wheelchair. I never quite believed how fast it would happen! Even though I was lucky enough to have an array of drugs to fight it.
Luckily MS is different for everybody so Julie is exactly right with her stance. After all the name of my column is ‘Fall Down, Get Up Again’, even though this is now just a philosophy rather than something I can actually still do. Who wants to read a column entitled ‘Fall Down – Call an Ambulance!’. -
Love Debbie’s optimistic outlook of whether re MS ‘we are going to let it control or manage our life’. In my case, though I’ve done a lot to act like this, I’m well aware that I have only managed it due to a loving and dedicated family unit. Not everyone has this. And indeed MS has affected me so much mentally that I’m v. lucky they’ve stuck with me!
Also as a writer I still have a working left arm. AI is still too terrible to write with verbally.
How do u feel about Debbie’s fighting spirit? -
Hi Yazzie.
Lovely to meet, ahem, a fellow traveler.
I was a freelance TV Casting Director – nearly all of us r these days. I didn’t need to tell anyone – it just became obvious as MS scythed thru me that I couldn’t continue. There was no easy way to get out to the theatre – or indeed the energy to do so. Let alone the hours of intense office work that the job necessitated. It was also deeply annoying that eventually, I could no longer even get up to our purpose-built attic office. Hey-ho.
Instead, I kept going to the live formatted topical comedy show I’d created at London’s Comedy Store. Which ironically was destroyed by COVID 19 – the biggest story since poss WW2. Let alone now!
I told the Store early on & they accommodated me immediately.
TV has become far more disabled-aware since my day. I once cast a blind man in a small blind part. I put my head down in pretence of bowing to the writer/director’s note that it would have been better played by a sighted actor. I bowed my head not in supplication but because I was actually smirking my head off. This was long before I got MS.
Hurrah for u.
Cheers John. -
Yes and no. I started wheelchair tennis sessions at a nearby leading tennis training club. Well, not so much started, but kick-started. In them days I could still kick.
However there came a point where I could no longer do it. I even held onto my v. expensive tennis chair, far too long, in the forlorn hope that I’d get back into it someday. Ah, well.
My motto has fortunately always been ‘Do what you can, whilst you can’. -
Well, whatever works. I’ve been a vegan for two years under my own hypothesis that it might just reduce inflammation spikes. OK, guess. However, there seems to be something to it. However, anything based on the paleo diet is deeply suspicious. A new age pseudo trend. Nearly 10 years ago this embedded article was published in Scientific American. Sorry Melody.
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I know exactly how Pamela feels. My MS started off slow then did that runaway train bit of the Hollywood movies. Only mine was terribly cast, the hero was inept and the train came off it’s tracks and crashed down a mountainside then fell into a deep glacial lake! Without my family unit I don’t know how I could cope.
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Managed it about three times in the summer. Have to wear a supportive semi-life jacket and be watched at all times!
Can move a bit with my arm & leg. Am effectively paralysed on my right side. So do go round in circles.
Completely shatters me & indeed my family. As need to use a specialist hoist & it’s a palaver.
Still, at least I don’t melt with the intense heat that we had about three times this summer!!!
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Hi Ed,
My Neuro highlighted the cancer risk of Lemtrada particularly when he recommended it. The embedded link was the first one that came up.
Cheers John -
Hi Ed
I’ve been on Solifenacin [Vesicare is a trade name] for over 10 years. Never suffered urgency except when having a UTI. And that is v. long story. x -
Well, that’s not why I had children, or indeed a partner! My youngest is off living his life – hurrah.
Many partners disappear when faced with the future horrors of MS. So I’m pretty damned lucky. My decline has been unusually steep.
Luckily this doesn’t seem to be the norm.
Independent living for me is no longer an option. Which is [swear word ] annoying as I am somewhat of an independent contrary nature!!!
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At the speed she’s going reckon it would be v. dangerous wheelchair!
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Hi Jilly
It sounds like it’s time for u going wheelie mobile.
How r u’re arms? My right one became near useless so I could no longer use a manual chair. However fatigue sets in with any distance. I couldn’t go anywhere on my own as even slight inclines proved impossible.
I’ve also had to adapt the drive and front door [all now wheelchair friendly] so can venture out on easily.
It was attending an outdoor music festival in 2012 that made us all realize I needed a chair. Had to beg for one from the organizers as they had no transport for the disabled. Sheesh.
Hope this helps. Please let me know how u get on.
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Hi Jilly,
I lost the ability to walk a few years ago. Also my days of using a manual wheelchair just skedaddled. So obvs. did my budding career – NOT! – in wheelchair tennis.
The upside is a powered wheelchair – no falling worries and at top speed it’s as fast as an Olympic walker. Though, a tad unnerving.
Cheers John
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Think I’ll leave quietly stage left……..
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Had my COVID-19 booster a few weeks ago – bit lethargic, but that was it.
The flu shot a week later completely wiped me out! -
Er, no. Even though I hate to agree with an American, even though it’s Ed, about health care!