Broken record

[Barry52]

We held our usual second Thursday meeting in Nottingham yesterday and the turnout exceeded 50 people, 21 with MND including 2 new recently diagnosed persons. I’m sure it is not appropriate to say that this was a record for the number of people living with the disease attending our meeting but it is testament to the fact we are doing something special.

We had an introduction to the incoming chair of Nottingham City Council who has chosen MNDA Nottingham as his charity for fundraising and awareness events during his year of office.

The care team at Nottingham QMC hospital gave a presentation on advanced care planning which evoked lots of discussion and everyone was pointed towards the information on the MNDA website.

We finished the last half hour with our usual “mix and mingle” but it proved difficult to move around with so many wheelchairs and walkers. I am so proud and privileged to be part of the team who give so much time and effort to make living with MND more bearable.

Barry

[Terry]

I thought, looking at your heading, Barry, you had fallen and broken something;

Well done to you and the committee, there;s no doubt that a healthy Mnda group changes things for the better in the area. I hate not being able to move around and talk to people at meeting because I'm in a wheelchair but it is something that happens.

Love Terry

[Newbie17]

Hi Barry, I was disappointed I couldn’t attend the meeting yesterday. A good turnout it but always sad to see new people with this horrid disease.

I’ve been suffering from a really stinky cold , just getting over it. All doubly unpleasant when you can’t blow your own nose or even get a tissue from the packet. I was a bit scared as my voice went for a few days but thankfully it’s back, albeit rather croaky.
I’m now on antibiotics and starting to perk up!

Hope you’re as well as can be x

Ps. My son bought me an indoor skydiving voucher for Christmas! Am I crazy enough? He clearly thinks so!

[Barry52]

Hi Helen,

We missed you but received your apologies via Godfrey. I’m pleased you are feeling a little better but yes you are mad to think of skydiving.

Terry,

Whilst I only use my wheelchair outside I understand how you feel moving around a crowded room. And why do people talk to those in a wheelchair whilst standing up. We can’t stretch our necks to talk to someone 3 feet higher. Rant over.

Barry

[Terry]

Hi Barry,

My chair stands up so I'm over 6 foot 3 then, I look down on people then and they give me more room because I am a lot more menacing than someone sitting down low.

You should get one Barry, you would be a full 5 foot !!!!!!!!!!!!!!!!!!!!!.

It's quite funny when I'm in shops etc. people just give you room even though I can only go 2 mph then.

Love Terry

[Kayleigh]

Hi Terry,

That sounds like one of those mega-cool, high-tech 'standing wheelchairs' - and very stylish for cool cat TC to go cruising around town in! I have seen them online but have yet to see one 'in real life' whilst I have been out and about.

I have also seen wheelchairs online with height adjustable chairs. I think they also look quite good because they have a lever that can be used by a person to move the chair up and down to different heights, whilst they are sitting in the chair. Unfortunately, not likely to be standard issue by 'wheelchair services' though!

Hope you have a great weekend.

Love
Kayleigh x

[Kayleigh]

Hi Barry,

Many congratulations to you and others at the MNDA Nottingham group for providing so much valuable support to so many people in your region who need it.

I agree with you, in that it can sometimes be very difficult for me to have a conversation with someone who is standing up, whilst I am sitting in my wheelchair.

Becoming a wheelchair user has definitely given me a different 'view' of, and insight into, problems that I have not had to deal with before. Trying to extend my neck up, like a giraffe, so that I can join in a conversation with people who are standing up is never easy! ... and, not forgetting another problem faced by wheelchair users ... those 'pesky' high curbs!

I hope you have a lovely weekend.
Kayleigh x

[Kayleigh]

Hi Helen,

Sorry to hear about your cold. I hope you will be feeling much better soon.

It sounds like you have got a great son there! What an exciting gift to receive, and definitely more interesting than the possible alternatives of socks or slippers!

Sometimes, it is good to have new experiences and adventures - and so I hope that if you do go for it, you have lots of fun and really enjoy it!

I expect that if you do go, it will be a great day out for you and any of your family/friends who are there with you - I imagine, a very memorable occasion for you all.

Although, hopefully you don't mind heights!

Love and best wishes,
Kayleigh x

[Newbie17]

Barry, Don’t worry I’m going to do more research on the skydiving! I saw a lady on TV the other week it was in her 80s and in a wheelchair skydiving. So maybe who knows……

I have a high rising power chair like you Terry. My local wheelchair services provided it for me. It is great for propping up the bar! I hate having to look at people when I’m in my chair not only is it uncomfortable but makes me even more aware of my disabilities. I once tried shopping in town while seated higher up, it took me awhile to make the connection with the lack of speed. Health and safety I suppose!


Kayleigh, thanks for your good wishes, it’s my daughters 26th birthday today so I am venturing out for dinner. My second trip out since before New Year so I’m really looking forward to it. I even had my nails painted this morning!


Hope you all have a lovely weekend.


Helen x

[Kayleigh]

Hi Helen,

Wishing your daughter a very Happy 26th Birthday - hope you are all have a wonderful day and a great time celebrating!!

I agree that having our nails painted can give us such a boost- although I can still 'do' my nails myself, I find that someone else painting them gives much more of a professional look, and it is always so nice to be pampered.

Oh, to be 26 again! - happy memories of the 1990s, when I used to listen to the Spice Girls and Backstreet Boys (ok - admittedly my taste in music wasn't so good back then! ) ...... and my favourite programme on TV was 'Friends' .... and not forgetting my 'Rachel from Friends' 1990's hairstyle, that was so popular with us girls in that decade!

A wheelchair that is good for propping up the bar - that sounds good to me Helen, and hopefully that feature will be particularly handy for you today!

Who knows what the future holds for wheelchair technology Hopefully, someone will invent a wheelchair that hovers above the ground - so that we can easily get to whatever height we want to be at ...... and we won't be bothered by all those pesky high kerbs anymore!

The 80 year old lady skydiving in a wheelchair - what an inspiration. It goes to prove that maybe the adventures that we thought were limited to our imagination, can actually come to life ....... sometimes, where there is a will, there is a way!

Best wishes,
Kayleigh xx

[Kayleigh]

Hi Helen,
I hope you and family had a great time celebrating your daughter's Birthday at the weekend.
Best wishes,
Kayleigh x

[Newbie17]

Hi Kayleigh
We had some lovely birthday celebrations thanks.
On Saturday, we went to our loca Italian, they really look after me and we can walk home too! I have to drive of course in my chair. Good thing I can’t be breathalysed or can I?!

Talking about modifications to power chairs, has anyone managed to attach a drinks holder? Handy for my glass of wine! No , seriously it would be useful. I’d also like to be able to stretch my legs out, sitting all day with my knees bent isn’t great.
Maybe a sun canopy, pushchairs have them or an umbrella attachment, my golf trolley had one! Somewhere to put my phone .......I could go on and on!

Love Helen

.

[Kayleigh]

"Ciao Helen",

Great to hear that you and your family had such a fantastic time celebrating your daughter's Birthday! It's always great to go out for a 'cheeky Italian' occasionally - in my opinion, Italian food and wine is the best!

(You may have already noticed - I have posted some suggestions about wheelchair/powerchair accessories in the 'electric wheelchair' thread, after Terry's post).

"Arrivederci"

Kayleigh x

[Newbie17]

Oops not read that. Will have to catch up!
Ciao!!

[Barry52]

Hi Kayleigh,

Excuse me but I’m the Gigolo here with my chicken shack in Tuscany and I agree that the best food in the world comes from Italy. First class ingredients cooked simply and they have more wine varieties than any other country.

My shack is no longer suitable for me but I am waiting for confirmation of a disability friendly resort south of Rome this summer.

Barry x