The Orthostatic Tremor Forum (archive)

Hi Golfnut...we are hoping US Funds will be written on the cheques ....as NORD research is in America ..............SO...in your case and others who may read this and don't have cheque accounts , what say, you go on line thru this OT site and make a donation direct to NORD following the instructions ....
Then personally email me the donation amount
john.diconway@xtra.co.nz
and I will put you into the draw for "go with the flow "...one chance per $50
and keep a good record,so should you win !! I will email you for a sending address!

NORD will no doubt knowledge your donation in the usual way .

We are also wanting this group effort to go into OT research....so if there is a way of stressing
that ,please do .

We are trying to keep this whole fund raiser as simple as possible for everyone ....
thanks for making this point ? and for participating ....Didi

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If you are donating on the NORD website it is important to choose "Primary Orthostatic Tremor" from the "research fund" drop-down menu. Click for more information and link to NORD

SYDNEY OT MEETING ..... WELL...BEEN THERE DONE THAT !!..Feel quite shattered in a exhausted but in a nice way ............need time out to just rest and ponder.... meeting other OT`s in a group has had a profound emotional effect ...watching and hearing how others cope ...the supporters ,totally care and want to understand .....meeting Carroll and Jenn for the first time from NZ all great

Golfnut talks about a grey blanket ....well mine is a light fluffy grey one , think I need to ...wrap it round and just sit out for a few days .................something I haven't done since diagnose .....

best wishes to all ...Didi NZ

Hi Di

I feel a bit the same way. Sunday was a long day travelling home, only to get back to Blenheim and find my suitcase was not on the plane. Thankfully it was found in Wellington and returned to me about three hours later. Monday was a busy day getting things sorted for Owen to go back to the Island - last minute laundy, buying groceries, him needing an urgent dental appointment for tooth ache (ended up on antibiotics for an infection), collecting the dog from the kennels, taking the car in for a WOF, and looking after our four year old granddaughter. By Tuesday when I saw him off at the airport at 8am I was shattered. Seem to be getting nowhere fast since, just taking my time doing things, and telling myself that there's no rush to get them done.

Good to catch up again with you.
Warm regards, Lynette

It is 2 weeks today since 18 of us spent the day with Dr Julian and 11 supporters in Sydney talking about our OT ...........it really was all about `us`,all day and that felt like a real luxury...we talked and vented , laughed and supported ...listened intently .........[often cried on the inside]

some of you would have taken the time to hear all or some of the videos...guess its pretty hard going ,if you weren't there ...they cant show the warmth ,little cameo snippets that were happening around the tables and over tea breaks and lunch...but sure you will get the gist of it ?

to condense the day into 4 [or was it 5 ?] videos must have been a huge job, Sue ,so pleased you thought to hire a professional....must have been a long haul for him . and he stood all day ,no leaning for him !!

For me personally I'm still recovering ...to have everything I thought reinforced...but do realize if I have to have something OT ,compared to other `brain conditions` is not all that bad .....but then its still sort of is ...because its life changing !!#!

anyone who gets a chance to meet other OT`s do.............it is just so rewarding in so many ways
keep happy .....Didi NZ

am into my last day of a NZ Arts Show weekend .......A big affair ... long days Friday to Sunday 10am to 7-30 pm ...perched on a high stool working on a clay sculpture talking to people ...with a wall and sculpture display inside the main galley that I have to man and re stock as it is a cash and carry affair,so reasonably busy ... the grand Gala night opening on the Thursday, [sold out $100 a ticket ] I was dreading ....skimmed around the out skirts, eying seats and sturdy walls as I went , but after 2 wines found I was confident to venture into the crowded alcoves ,always with an eye on a chair or doorway to the out side for a quick get away .........point was I found I could quietly get around as long as no-one bailed me up !! there was no-way I could walk with a glass in my hand like the ``good old` days......I got a wine sat down , sipped and talked then left the glass and drifted onto the next gallery ..I did survive the evening, and for the first time for some years actually enjoyed the evening ....
Even after our seminar in Sydney ,and much talk about Lyrica and other drugs , I really am trying to `wing it` drug free for as long as possible ....avoiding the side effects ?
wine is a drug ....but last Thursday it worked for me, at 69 I already know and understand the side effects of wine ,and somehow it just seems safer .......long may it last and work for me ....`cheers` Di

It is so good to hear from Golfnut .....I have missed her updates and also insights on other threads ...
perhaps there is such a thing as being in remission ?....would be really interesting to know what Dr Bain makes of it all .....one lives in hope .
I do know stress is my biggest problem dealing daily with OT....I now not go for a swim if I`m planning a big grocery shop on that day ....as we all know it is a real work out in its own right !!#!

the last few days have been tough with mini family problems....and my OT has kicked in big time
making me realize I have to let that `stuff` go , if I want to have better days personally .

I have also realized when out , even if I feel great , don't go with out my stick ....my brain notices and it all turns to custard .....sometimes it is hard to keep laughing ...............thanks Didi NZ

DiDi :
I love your description of how you conquered the NZ Arts Show weekend. You were doing things in the spirit of what you named your sculpture “ Go With the Flow”. You have the skills of observation first and then doing it your way! Thank you for sharing. That is what I keep asking our OT friends to do. Telling how one deals with our everyday or social events gives strength to other OT friends. SO! EVERYONE please report in if you have been a miss in updating your OT friends. Good or not so good , whatever ! .........

Gloria

Been awhile since I posted ...probably no big deal in the scheme of things, and for others ?...
but last night I re-read all this thread and realized how far I had come ...and how much insight I had gleamed from you all , and need to keep this `what say others `flowing even if it is just for my own record ............

Life does not get easier aye?...just like age , it just keeps going ...but do realize I ,now have got many
strategies in place to `mostly` deal with whats thrown up ...but have found out pride comes before a fall....get too cocky and splat ..

am learning to let others take over my kitchen when they offer , and keep stom when they are not doing it my way ...a huge thing for me .......
My 82 year old husband is marvelous, and our roles have reversed ...I married an older man , Ha!,now I have caught up and he`s looking after me , he`s there waiting to support , and its accepted with much love .

Am choosing to avoid crowded outings often ...but also sometimes when I am confident and want to go , my shakes kick in , and I stay home , on reflection its usually that I have already had a big day and my brain says enough!! ....and also if I`m driving .. my theory about a glass of wine is not an option .
thanks Didi nz

Hello Di
You have summed it up beautifully. Yes life does go on and we just have to deal with OT by making the adjustments required ...... for Owen and I it has been a huge one, living in two different parts of NZ, but so far so good and we're coping with the changes - though could have done with him here with me during the big shakes!! I probably need to try a bit harder to say no when I'm not feeling up to looking after grandchildren , but don't like letting our daughter down - things we do for family!

Note my name change LMP1.
Regards, Lynette

Hello, Didi & Lynette:

Lynette, good thing you posted your name change . It showed on my new member list and was going to send you a welcoming note as I do with new members. Nonetheless, I like exchanging thoughts with the two of you because you are both good at managing your individual OT life styles. There is no “ one size fits all “ when it comes to coping with OT but the overall input of managing our OT disabilities do follow a lot of common ground which is part of our identity. The important thing is that as a group of OT people we are showing strength by connecting with each other. Didi, as an artist do you find a little escape while working on a piece of sculpture ? When did you start your art career? I enjoy going to art shows and art museums but they do present a challenge at this point in my life.

As always, Gloria

Dear Gloria ...so always nice to hear from you , you are like our lovely soft Mother superior without the relidge bit
Yes I do find escape while working with clay , perched on a high stool `my` chosen music or radio playing depending on my mood or the piece [opera for singers ] total bliss
there are times the shakes come , but then I stop go away ,give my brain its way for a little while then come back to it .........am learning to pace myself , which is not at all a bad thing ...and believe my sculptures are better for it
the downer is not to be able to carry my dry [easy to break] works across a garden down steps to the kiln for firing ...so training up my beautiful teenage grandson ..which is a plus !
I am finding my clays `grow` smaller [size not subject] guess my brain is telling me ,easier to manage ..

I realize I`m very blessed to have my shed and my sculpture to escape to...and now ,touch wood as my OT progresses I`ll keep doing it ,adapting probably subconsciously as I go ....Been away 2 days ,so am itching to get into it ....missed my swim this am as I'm unloading the cooked kiln ,always surprises and mostly joyful...can manage carrying up hill to the shed so is my workout for the day.
thanks for asking .....Didi NZ

Been a month since I posted ...All going well , but like everyone else OT is sort of still calling the shots ,and on some occasions that can be a real pain in the butt !!......but mostly its all OK .....there are far worst things out there for people to cope with ...

I am heartened by the attitude of people , they seem to see a stick ,read between the lines and make room for you ....I was invited out of the blue to a WOW performance [world of wearable art] first hesitated ,dawdling crowds steep narrow stairs , no rails ..`no way !!#!` the invitation came from two close ,out of town GP friends who know me well , skied Canada and US in the good old pre OT days together ....they`ll look after me , [and yes they did] point is, I then spent days worrying about how I would cope,now I had accepted the invitation, thinking wish I hadn't ,floating round in my head .....causing more tremors and unnecessary mental anxiety....well ,what a waste of stress that was .....I had a wonderful time , they and everyone else subtlety looked out for me ,I always with a B plan in my head ... .
I`m now determine to grab more of these opportunities and not agonize about them , until the day..

Golfnut if you read this ....we would love to hear from you .no pressure ....Didi NZ

THANK YOU Golfnut ....for your quick response, on your thread, it really is appreciated ,and read by many others beside me I`m sure ?......such good news we all like to hear
Also today I found Janecqv story and Gloria`s response on the `eye related disorders` thread ....

all exciting stuff...there really does seem to be other ways of tackling living with this OT,....what will work for one , may not work for others , but certainly `me` thinks it pay`s to keep an open mind and try other things ,with out it taking over your daily life ...[mind you OT tends to do that anyway]...... all the above has given me food for thought ...thank you all ......Didi nz

Hello DiDi: From your very first post you have shown an example of how to manage OT with outstanding understanding. Your mind set is one of being open with what we have to deal with yet trying to find ways to retain your independence and wise enough to know when OT takes charge to accept help. Always look forward to your postings. Thanks, Gloria

DiDi: I rechecked and edited the scrambled message I had written to you last night. It was way past my bedtime but wanted to drop you a line before I ended my day however I unfortunately skipped over a number of words. I bet you thought I had one too many but then you know I do not drink!!! Better to blame it on this " aging thing "........ that is a great big bucket to throw mistakes in.
Sorry, Gloria