How is everyone?

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

Moderator: gloria

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

Re: How is everyone?

Post by Di Di »

Hi Angela...Yes you are right ... all just doing the best we can to live with /round this OT we all have in common !!#!............one thing I also know is OT effects us all differantly , but we are in the same boat , some with more paddles to help cope than others ....feeling really confident , then the tremors kick in or you are just having a gray day ,head wise and it all turns to custard .

I have found brousing the forum has helped me such a lot ....and Im sorry you havnt been recieving advice............so here goes !
for sore hard calfs , I have made myself a wheat pac....linen or pure cotton tea towel , fold in half , sew the sides, and one line up middle to form two pouches .....1/2 fill each [about 3 cups] with wheat ,you buy from farm/chicken feed suppliers .....sew along top ......you have made a floppy wheat sack .........zap on high in microwave for 4 mins.... and drape on your sore muscles :) works a treat for me , I go to bed with two , summer and winter , have done for years ... take care ... Didi nz
LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: How is everyone?

Post by LMP1 »

Hello everyone
I am home from hospital today after having an osteotomy and plantar plate repair to my left foot. I was quite anxious about what the surgery would do to the OT, having had such a bad experience with surgery back in 2008 which led to my OT symptoms really 'kicking in'. The Surgeon is delighted with how the surgery went and I am pleased to say that so far my OT shakes have not been any worse. I have been sent home with plenty of support equipment (shower and toilet supports, a walker and crutches, and a support boot for my foot) and was advised by the Occupational Therapist to contact her if there was any other equipment that I might need in the future to cope with OT at home. Up until now I've coped with just hand holds in the shower and doing plenty of leaning on benches, etc.

Six to eight weeks down the track when I can discard the walker and crutches, I am hopeful that all will still be as it was before surgery. Till then it is feet up and taking it easy, with the expectation that I will be able to get back into walking again pain free.

A number of the staff at the hospital asked lots of questions about OT and one of the nurses wanted more information so I told her to search this website, telling her it was my lifeline when I was first diagnosed back in 2009.

Best wishes to everyone.
Lynette
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Hi Lynette - Glad to hear the surgery was a success, best wishes for a speedy recovery!
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hello Lynette: It is morning here for me and just went into the website to see if there was any messages. I was glad to read your surgery is over and all went well. Please keep us informed on your recovery . All the best, Gloria
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

In preparation for the upcoming meeting in Omaha Sept 22-26, a new topic has been started (Link below) for anyone that would like to discuss the event. This topic is for anyone whether you are attending the meeting or not. Everyone is welcome to contribute their thoughts, it can be about the weather, the food, or people you have met, or just wishing everyone a good trip. Anything goes

LINK TO Omaha Topic

you can also access the topic directly from the home page

Image
babyboomer54
Posts: 7
Joined: Mon Apr 28, 2014 5:54 am
Location: Sandstone Point Qld Australia

Re: How is everyone?

Post by babyboomer54 »

Hi Mike,
This site is wonderful as l feel that there are always people who know and care about the problems that occur. Stress seems to make matters worse and the constant struggle to look normal in turn causes the stress so one fuels the other.l have stopped taking my medication as I found l just couldn't function however l am now worried as my shakes are getting worse and I am becoming very low. I went shopping the other day and it was an ordeal. Trying to stay still while looking and trying things on while trying to lean on the wall. Feeling that I needed to justify myself to the sales assistant as I held onto the counter. I am going on my overseas trip next year I should be looking forward to it but now I am wondering will I spoil things for everyone else. My marriage is falling apart and I am struggling to cope. Sorry its not a very uplifting experience, maybe that is why a lot people don't want to share:)
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi! babyboomer: I saw Mike at the OT meeting and research in Omaha and I don't believe he is home yet so I thought I would jump in and send a few thoughts your way. I find trying to look normal is not possible for us to do because we have a disability. Also I use a walker with a seat or a cane chair when I go shopping these are a great help and I do not get as stressed out. In fact by using them I find people know I have a problem and come over to me and ask if I need help. This way you do not need to do any explaining . Feel better, Gloria
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi Babyboomer
Sorry its taken me so long to get back to you ..
Well well you are in a muddle arent you? I can only speak for myself of course but to be honest I consider myself lucky to have OT or teddy bear legs as I call it....my reasoning for this as bad as ours is its the best of the bunch! MS, Parkinsons, Dystonia ,Motor Neurones , are all so terrible ....Im not saying ours is good but we dont have to take medication an in most cases when we sit or walk it goes away.
So how can we make it better to cope with ? Firstly get a wheelchair for when you go shopping I take mine always Carry the cards that explain OT ,always works .
Please look forward to your trip Again get a wheelchair tell all airlines hotels etc that you need assitance .
I always do and you never have to stand in line at airports the assistance will take you through security right to door of plane .If you get everthing organised and explain to everyone your problem I promise it wont spoil it for them as long as you are dealing with reasonable people......of course if they only want to eat at buffets it will more difficult Dont fight the OT by ignoring it and trying to do everything as though its not a disability Instead fight it by making it as hard as possible for it to stop you doing what you want.
I say all this because its what I and many others that I have had the pleasure of meeting do .and it works.
I have just finished travelling for a month on my own it was a bit difficult at sometime but most of the time it was fine
As far as your marrige breaking up its hard for me to comment especially as Ive be married 3 times but maybe some comselling so your partner can understand what you are going through.
My email address is mikesenker@aol.com .Email if you want to chat more .
I try and take a optimistic view of things but at same time I understand how you are feeling
Please post here all your OT friends will help you through this I promise
Keep Smiling
Mike
:)
Joanna
Posts: 4
Joined: Mon Oct 20, 2014 11:58 am
Location: Tauranga New Zealand

Re: How is everyone?

Post by Joanna »

I woke up feeling a little sorry for myself and decided to log in I have just read all the posts and feel so much better ; love the eggs story . I too have chairs stools etc scattered around the house I bought a hairdressers stool on wheels that swivels for the kitchen ! It's excellent but no room for my legs so have made room in the cupboards and open the cupboard doors and park my legs in the cupboard for doing dishes !! It's hanging the washing that is just so difficult. How do you folk handle hanging the washing ? Provided I am very quick I can bring in the washing record time by anyone's standards . I also notice there are 3 dots in the map of New Zealand where I live . How would I go about finding my New Zealand OT mates ? Thank you all for being there I am certainly starting my day feeling supported a smile on my face and appreciative for apart from the wobbles I am very fit and healthy !
Thank you xoxo
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Hi Joanna -
I woke up feeling a little sorry for myself
Everyone can relate to that :!:

Thanks for the update and glad you are feeling a little better, here's a link to a discussion started by DiDi, also from NZ!

http://www.orthostatictremor.org/phpBB3 ... ?f=1&t=591

best regards
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: How is everyone?

Post by admin »

Nominate Someone Courageous for NORD's 2015 Portraits of Courage Gallery!

NORD seeks input from our Member Organizations, Corporate Council Members and the broader rare disease community to nominate individuals they feel embody the spirit of the Gallery.

Individuals honored in the Portraits of Courage Gallery possess the following admirable qualities that embody and illustrate the rare disease patient experience:
• They have demonstrated courage in their own journey, and have helped others find courage in theirs;
• They have shown remarkable resilience in the face of hardship;
• They support, and are advocates for, all patients living with a rare disease and those affected by it.

While NORD awards several groups and individuals at its annual award event, the Portraits of Courage Gallery is reserved for patients and families affected by rare disease. This includes:
• Patients - children and adults
• Parents of children with a rare disease
• Other family members/caregivers of a rare disease patient
• Please complete all nominations by December 3, 2014

Nominate someone courageous today!
http://bit.ly/Portraits_Courage
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

I think that this "Portraits of Courage Gallery" is terrific. When I saw the word courage I immediately had someone in mind and I will be sending in my nomination for Peggy. Her dedication and hard work that has led to multiple meetings, fundraising, and research, is outstanding. The more nominations the better so please join me if you feel as I do for all that Peggy has done for the OT community!

Gloria


Nominate someone courageous today!
http://bit.ly/Portraits_Courage
geandreas@aol.com
Posts: 8
Joined: Sat Jul 26, 2014 12:25 pm
Location: Greensboro, NC

Re: How is everyone?

Post by geandreas@aol.com »

I am still learning how to deal with this problem. The doctors at Duke Medical Center have finally diagnose me with OT. The problem is that I actually have OT Plus. My tremors do not stop when I walk. They actually get worse and I must sit down within 1 minute after I get the pain in my back. My general doctor is not familiar with this. The doctor at Duke also said that I also had Aprexia. This was the only way they could explain why I collapse after standing for five minutes. My doctor now thinks that perhaps I have a brain tumor and I have an MRI of my brain next week. I have several MRIs of my brain over the past three years with no results. I have had physical therapy four time in the past three years. I still have a problem with my balance. I have learned to move slowly and I make sure that there is a chair nearby. \
I have concluded that dealing with is total up to me. I HAVE YET TO MEET A DOCTOR WHO REALLY UNDERSTANDS THIS PROBLEM. I have always been a very active person and this OT has completely change my life.
DO YOU TEND TO GIVE UP ON DOCTORS ?

George
Greensboro, NC
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

OT Thanks-giving.

It makes me smile to think of the people that have stepped forward to change the world of one very rare disorder. They have helped to organize meetings, created fundraisers, helped to guide others by sharing their own experiences, donated to research, traveled to be part of a research study, called a friend in need. Change comes in all shapes and sizes. Here are a few of the notable highlights of this journey, and hopefully this will make you smile too.

First meeting - 2008 Meeting in Rochester Minnesota with Dr Matsumoto - Mayo Clinic

2010 Meeting in New Jersey - share stories, coping skills, and plan for future meetings and fundraising

NORD Orthostatic Tremor Research Fund initiated - first grant awarded in 2012

2012 Meeting in Omaha with Dr Torres-Russotto at the UNMC
Initial stage of research into Orthostatic Tremor

2013 Meeting in Sydney Australia with Dr Julian Rodrigues

2014 Meeting in Omaha with Dr Torres-Russotto at the UNMC
second stage of research into Orthostatic Tremor

The University of Nebraska Orthostatic Tremor Research fund started in 2014. This fund helps continue the 2 research studies that have already been completed. Plans are already being discussed for the next research and meeting.

September is now Orthostatic Tremor Awareness month

NORD Orthostatic Tremor Research Fund - second grant award expected early 2015

2015 Orthostatic Tremor Meeting to be announced soon!

Plus other meetings, fundraising and independent research around the world.

These events didn't just happen… dedicated and caring people have made a difference. There has been new OT research, awareness of Orthostatic Tremor has grown, and friends have been created across the globe.

All of this is the result of - a very small group of people with a very rare disease, the medical researchers that have dedicated themselves to this disorder, and the caregivers that support those with OT.

"Together we can stand up to OT"

To all - thank you and wishing you all the best. Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

I have been clocking my life with OT since I was diagnosed in 2000 and often think of the journey I was taking before then not knowing why the legs that held me up for most of my life were no longer able and were becoming the impossible everyday standing scenarios that we all share and discuss together with the OT Community. We are all working together ( every post counts) because we are giving to the medical community the best picture of life with OT. Dr. Torres is a great example, he listens to what we have to say and is our hero because of the OT research he is doing in Omaha. Those that attended understand his great dedication to the study of OT. This is a reminder to all our OT friends please register if you have not and those that are to keep reporting UPDATES , the more we do the better OT information grows and we will establish a time frame of chances as they happen. Thanks always, Gloria
Post Reply