what say others?

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: what say others?

Post by owen-lynettepickles »

Yes I do Serena. Also when we were in Las Vegas last June I was forced to walk on the walking travellators to get to different areas. Held on firmly to my husband's arm as I don't like the motion under my feet - don't have any control over my legs on them. In the airports I could avoid them by taking the long way - walking on my own two feet - but in some places in Las Vegas I was forced to use them.
Lynette
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hi ...Back from another successful bronze casting camp ...life is just SO much better now I`m up front about OT and not trying to cover it up ...and keep up !!

As I packed to go , I thought `this will be my last time ` all too hard :(....not so , coped well ...achieved great castings and pulled my weight regards team work ...just did things differently :)

My next adventure is flying to Sydney then onto a internal flight to Byron Bay ...attending a wedding.
have in my mind to request a wheelchair , but may just use the travel OT card and ask for help if needed .
Serena regards the escalators I find if I lightly hang onto the rail and let it slip thru my hand it seems to work as long as my feet are well apart and stick supporting in other hand ...down side , makes it hard for people to overtake me !

the moving walk way ...hang on the same way but also walk reasonably fast taking real care as you step off ....
other wise like Lynette walk the static route beside the moving walk way ...depends on the crowd for me ...every situation is different, bit like defensive driving , always planning mentally ahead and no two situations are the same . All pretty tiring and sometimes you miss the view [with such concentration ] but for me worth it to avoid mishaps !!

back in the hydro pool doing my jogging , walking and stretches ...anyone out there doing the same in water ?
best wishes to you all ...Didi NZ
Last edited by Di Di on Fri May 03, 2013 6:54 pm, edited 1 time in total.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

DiDi: I was so pleased to hear you say " life is just SO much better now I'm up front about OT"..... That is an approach all OT'ers should practice! I like your words of wisdom. Gloria
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Thanks Gloria ..I was on the door, meeting and greeting at the last NZ Academy opening ,perched on my high stool ,seems to have been totally accepted and feels normal now .....cant venture up into the crowded gallery , but am noticing people have started to come back with a glass in hand to talk ...all good :)
Dear Betty like me is waiting for the latest report from Golfnut...[no pressure GN :)!]

I am now needing help to carry and load my kiln, a big deal for me to let go and trust ...have found now I'm saying no to crowded outings completely ,instantly feeling relief not regret .

Realize for years I have been reluctantly saying yes and just hanging in and getting through outings without any real enjoyment or pleasure while smiling on the outside and total panic on the inside ....have decided life's too short to pretend anymore ....
having said all that ...this Thursday off to Australia and Byron bay for a wedding on a beach !!...wobbly sand and crowds I know !! but is extended family :) somethings are really too special to miss , freedom of choice and all that .......while there will have a go at swimming from the beach but already wobbly just thinking about it :(.......... the hotel has a pool :)

everyone look after yourselves...take care .........Didi NZ
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hi fellow OT`s ...
Well ,back from 7 days in Byron Bay Australia ....was like living in a car wash with out the soap,rained the whole time , but a good time was had !
traveled with my stick and when the few times I got into trouble , I explained I have a balance problem ...and if more information was needed ,said its a `brain thing` and I cant control it...people part, a wall or post was exposed to lean on !! phew !!................

DANCED at the wedding ,was sitting watching, tapping my feet, and a young friend pulled me up... protesting I said I `can`t` dance anymore ...but I was !! then , the grooms Dad took over and we danced `just like the old days`s`...didn't last too long ,I was static ......a little cameo of `TOTAL JOY` ......I had lower legs of concrete soon after but it was just so worth it :)

Always pleased to get home ,where I can relax and do things `my way `so I avoid to much OT interfering with my day ....back into my clay , & mind drifts ...all that rain didn't matter , I'm back there dancing !! :)

Petra talks about cooking , I use my high stool most of the time now , as I end up with a wet mid drift leaning on the bench ...and `yes` I can hear my late `darling Mum`saying wheres your apron ...!

take care all ....Didi xx
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

It has been an age since I have posted ...I come on line often , gleaming from others ....new members `welcome` I read your postings and totally understand where you are coming from ...do keep writing . :)

Have just got back from yet `another beach wedding`...this time a 8 hour drive up the north island
to a beach on the Coromandel ....OT as usual played a big part both physically and in my head , but my friends & family are beginning to really understand and let me get on with it my way .....knowing I will ask for help if I need it .....admit often it is not easy ,and would rather just stay home ,but them something magic happens and its all so worth it.

Have had a house full here at home over Easter , and found with the extra bodies around taking up space my wobbles increased......life really is much easier for us OT`s when things are uncluttered and our home front is stress free .

Am making plans to join Sue Boyd and other OT`s over in Sydney in June ...for a day with Dr Julian Rodrigues who will talk about his research and current trends in understanding and dealing with OT...looking forward to meeting up with like minded `friends` ..............if you are reading this ,and live down this end of the world please give some thought to attending ....you can contact Susan sjdb4@bigpond.net.au for all the information ...`thank you` Sue for planning this gathering for us down under ...
Take care ...& keep moving in what ever way that works for you :)
Didi NZ
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

DiDi :
I'm so pleased Sue has arranged a meeting in Sydney . I know what a magical, engaging experience this will be for all those that can attend. Everyone will come away from the meeting having a better understanding of how other OT people cope with our disease. Also everyone will have the chance to meet you and admire your talent as an artist ..... what an extra treat that will be !!!!! However, I'm so sorry and disapointed that I can not attend but the trip for me from New Jersey, USA is around 19 hours & 51 minutes, way too much for this body.

You are so right when anything added to our normal day or space can produce stress of one kind or another. I believe it is simply because of coping with our OT limitations we are already overburdened. .

Always good to hear from you, Gloria
owen-lynettepickles
Posts: 54
Joined: Sat Jun 06, 2009 4:26 am
Location: Blenheim, New Zealand

Re: what say others?

Post by owen-lynettepickles »

Hi Di
Pleased to see your post - didn't know whether to contact you direct or not as it had been very quiet from your end (you usually post at least weekly) and I was concerned that you might not have been well. I see by your post that you've been up in the Coromandel, hence the silence, as well as having a house full over Easter. I know what you mean about liking your own space - as soon as I have the three grandchildren at home, I have to be aware of where they are all the time as I don't want to fall over them. That, of course, triggers the 'wobbles'. I also have to be aware of where the dog is these days too after tripping over her and falling flat on concrete. Beautiful bruised knee and a bump on my head to show for it, so the next day I made sure I gave our daughter a key to the house - just in case!! Now I'm very careful when the dog is around - guess I got too complacent .... it won't happen to me!

I'm back on the Chathams for a week of R and R. Owen was with me in Blenheim for Easter, then I came back with him yesterday. I know I need to put my feet up and relax after overdoing it setting up home in Blenheim. Pleased to read that you are going to Sydney. Owen and I are going too - going over a week earlier to have a bit of a holiday before the meeting. Will look forward to seeing you again there, and also meeting other OTers and hearing their stories.
Regards, Lynette
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hi see you are on line Lynnette ....so had to send a quick reply ...THRILLED YOU ARE GOING TO BE IN SYDNEY ...had every intention of finding you in Blenheim and talking you into it !! everything is really fine , just busy with a group exhibition I`m involved in at the Academy ...opening on the 12th

You are right about the tripping when there is small things about ...be it dogs or little children ...my legs trigger danger as soon as I sight them ...pathetic , I blame my brain!!:)
On the island there was no small children in the mix so can see you have some adapting to do.

But on the other hand dogs and children catch on quick too ,and adapt .......they are both good to have around in our lives ...I ramble ...GREAT NEWS YOU ARE GOING ...look forward to meeting Owen ...........find you later ........Didi
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Well my art opening has happened ....All very successful ,am now sitting down catching my breath and reflecting .................I have up till this weekend adapted Academy openings and crowd management around my OT .....Taking on the job of meeting and greeting at the entrance [leaning or perching ] ..and avoiding the main gallery altogether .....worked for me ! :)

this time I HAD to be up in the crowded gallery around my works ...so before hand I sorted a side wall that was reliable to lean on with 3 ways to escape from if need be ...had my collapsible stool leaning behind another, out of sight for emergency ........
With my faithful walking stick ...good rubber on tip to cope with slippery gallery floors I was able to stand and lean forward legs apart using stick forming a triangle ...worked a treat till the gallery got really crowded then ended up leaning on the preplanned wall ................What I'm trying to say is `we` can cope with situations with pre planning ...I'm not saying it was the 100% pleasure of the pre OT days .....and at the end was totally `knackered` just trying to stay up right and focused on what people were saying aware of the crowds SO around ME.....towards the end of the evening as the crowds thinned my brain allowed me to go into the center of the exhibition ....
and that really proved to me it is my brain that calls the shots ....and if I listen and accept that I will get through things ....and survive it all .
I watched faces as the curators introduction and speech went on ...could see they were curious to ask me `whats this?`...thought what a opportunity to enlighten a mass about OT....but we were there for the Art ...but another example about how OT can be all assuming if you let it ....

a bit of a ramble .....sorry ..but there it is ...
the Forum is one place I feel safe where it can be about `me` :)
take care all .........Didi NZ
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: what say others?

Post by gloria »

Di Di:

What a admirable “ramble”! You have learned to placed OT in a range so you had control of your day with preplanning strategies . If all OT friends would learn to assess their EVERYDAY , particularly those involving other people they would reduce stress levels and find enjoyment in the day AND TO QUOTE YOU :

“it is my brain that calls the shots ....and if I listen and accept that I will get through things ....and survive it all .”

I hope all OT friends will accept your words of wisdom into their lives,

Thank you so much, Gloria
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: what say others?

Post by Betty »

Hello DiDi,

So happy to hear your art opening is over and went so well. It was also good to hear how well you coped with the situation; I'm sure it was a challenge at times, but you did it! Good for you! :D

As you said, and Gloria agreed, if we plan ahead, things should go more smoothly; it worked for you.

I always enjoy reading your posts....keep up the good work.

Betty
Di Di
Posts: 149
Joined: Tue Jan 24, 2012 5:03 am
Location: Wellington, New Zealand

Re: what say others?

Post by Di Di »

Hi everyone ....life is ticking over ...day at a time stuff , dealing with my OT as it pulls me up when for a while I had forgotten . It never seems to be far away ready to rear its head and bring you back to ...oh ! that's right , not sure I can manage that ...a right pain at times ....but there it is ...that's our OT we have to adapt too and live with ....

NOW YOU OUT THERE ....AT THE SYDNEY GATHERING WE ARE RAFFLING MY BRONZE SCULPTURE
`GO WITH THE FLOW` A UNIQUE PIECE [no mould.. only one in the world ] on a recycled Rimu wooden block [thank you, husband John]
for research funds ..........I am asking you to send personal cheques/checks to the value of $50 upwards , to my home address along with your full name and contact information ....so NORD can acknowledge your donation and I have your address should `Go with the Flow` be heading your way

Di Conway
2 Beacon Hill Rd
wellington
New Zealand 6022
please make out to ....NORD and write US FUNDS
every $50 will be a number in the draw
there is a time frame ...you have up to MAY 31st ...to be sure to make the draw ....

Image

click to view larger images

Sue B our Sydney convener thought `go with the flow ` was full of the joys of life and
`who cares a stuff` ...... I thought that was great compliment ........do hope you are able to support this fundraising effort .............thank you Didi NZ

---------

To make a contribution to the Primary Orthostatic Tremor Research Fund and to have your name entered in the drawing for the “Go With the Flow” bronze sculpture by Di Conway, send your check, made out to NORD, with Primary Orthostatic Tremor Fund on the memo line, (in the amount of $50, $100, $200 or more) to Di Conway, 2 Beacon Hill Rd., Wellington 6022, New Zealand, with the completed form (below). For each $50 donated, your name will be entered into the drawing. The winner will be drawn on June 22 and notified shortly thereafter. To be certain your entry arrives in time, please mail by May 30. Thank you

Your Name____________________________________________________
Street Address__________________________________________________
City/State/Zip/Country___________________________________________
Email address ____________________________ Amt. contributed _______

If you are making a contribution from outside the USA, NORD requests that all checks/cheques include US Funds next to the amount. Thank you!

click for printable FORM
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: what say others?

Post by Betty »

Hi DiDi,

What a wonderful gesture to donate GO WITH THE FLOW a "one of a kind" sculptures with all monies going to NORD. Hopefully you will get everyone who is on this site to donate. That should raise quite a sum for our cause.

Thanks for your generous gift.

Betty
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: what say others?

Post by golfnut »

Dear Didi - wonderful sculpture!!

I assume you mean Australian dollars 50 - right? And - in my end of the world checks are no longer used. At all. We wire transfers instead. So my suggestion is that you set up a new account (do not spread info about your private one) and let us know bank transfer details so that I and others from countries fully into electronic money, can participate.

:)

Best regards
the golfnut
Post Reply