kiwi beaver 1's Discussions
Driving with dystonia
Replied Sep. 21, 2008
What have u tried too help your dystonia
Replied Jul. 16, 2008
What have u tried too help your dystonia
Replied Jul. 15, 2008
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kiwis watch oprah too, i hope they mention us who have it and not just america,i don't mind who the lady is i hope she can tell about the lonliness of living with dystonia and how it can take 38 years to be diagnosed like me. and how you don't mee...
Profile Information
- More about me (my health interests and reasons for joining WEGO Health)
- i live a life with dystonia with essential tremor it is hard at times and talking about it is really new to me.
I find keeping busy is the best way to stay on top of it , and having things to look forward to.
if i sit and think it makes it to hard to bear, and i doubt myself. But at the same time i find sitting or dawdling along the beach at a quiet time feels awesome.
Kiwi beaver 1's Blog
dystonia today
Today 18th july 2008 is not to bad living with dystonia and essential tremor.
It is very wet but i did get out of the house to visit library and get groceries with my daughter.
i usually grab the trolley at the groceries shop to help with my limp,my young daughter wrote our list today so that saves me getting a sore shoulder.
It is so much easier buying things today unlike a few years ago, no eftpos and it was accepting change being counted out in your very shakey hand.
Now it's the odd swish t… Continue
It is very wet but i did get out of the house to visit library and get groceries with my daughter.
i usually grab the trolley at the groceries shop to help with my limp,my young daughter wrote our list today so that saves me getting a sore shoulder.
It is so much easier buying things today unlike a few years ago, no eftpos and it was accepting change being counted out in your very shakey hand.
Now it's the odd swish t… Continue
Posted on July 17, 2008 at 10:18pm —
Comment Wall (18 comments)
- At 6:58pm on September 7, 2008,
sheep said… - Hi Karen yep the first thing we both said was i wonder if we could trace it back to you lol, i will see what i can do and get back to you on that one, wouldnt it be great if it was
Yep im on the up for a few days now hopefully, the Clonidine seems to be working very well, not urged or been sick for 3 days now , they are saying its the tremor of the throat that is causing it and the severe nausea, but touch wood ive been eating non stop for 3 days and feeling hugely more relaxed and i m actually getting10 hrs sleep each night where as before i was getting 1-2hrs then awake for 1hr then back off in a cycle.
I reckon your Nero and you are right on that score , my muscle spasms come 1-2 per month and thats when i take the Diazepam & voltarol, but unlike some of the people on here who i feel terrible for they get them nearlyt every day, so id say we get more of the Essential than the Dystonic version
Yeah i never took no meds as a teenager or a child as it was just put down to me being a nervous child as they didnt know i had all the wires stuck to my head etc etc, and they found nothing, it was only 4-5 yrs or so ago that i was actually diagnosed, i was also told some it gets worse some it stays the same, unfortunately mines progressed and i think the worst thing is the unknown.
Yes like you jobs were a nightmare finding one to fit, and when i finnaly did it was time to give it up lol, but i lok at it as a new begining and not an ending.
Thats brilliant that you was determined to practice carrying and carrying and i take my hat off to you for that, as sometimes its all too easy to just give in.
Unfortunately i have no copping method at the moment and spend alot of time flatout, but if i get to grips with it all i will most definately tell you what i do, at present im still trying to get to grips with how fast its all moving in the wrong direction lol , all i know is to joke about it and laugh as much as you can and when it hurts laugh some more.
Next time your laughing just think of me laughing some more and that will get you giggling again lol
I will be in touch with that code if they ill give it to me, if not i will ask around.
Stay safe and well and regards to your hubby for the idea, it will really be good if it was link back to your orchard.
Sean
- At 9:26pm on September 5, 2008,
kiwi beaver 1 said…
- sean my hubby just told me if you go to the supermarket where you bought the kiwifruit or your father did, you ask the manager for the pin number on the packaging of the fruit and if you give me the pin number i can tell u if it's from our orchard ok.
karen
- At 4:43pm on September 5, 2008,
kiwi beaver 1 said…
- i hope you are feeling better now, i see you take propranalol, that's what i used to take until i stopped it with my doctors in 05, after that i was diagnosed at long last of having dystonia .
the neuro reckons i didn't have essential tremor but my doctor believes i do and so do i.
essential just means no known reason anyway.
dystonia means trouble moving
so that's us eh!
I never took any meds growing up with this condition, i went to a paedtrician at 11 years of age and that was it, i didn't want to be treated different so i went to normal school and did all my work myself, but exam time someone should have said i needed help to write it, i was pretty determined though to be seen doing it like everyone else. I gave it my best shot, but it wasn't good enough.
I am doing well now after quite a few years of struggling i don't have the same struggles now like finding and keeping jobs, that is a huge weight off my shoulders. I think the job hunting was the hardest time of my life, even if i got some. as a kid i had paper runs and at 15 had a holiday job at a bottle store and did a little filing job there and people recycled bottless their and got gas bottles filled, i loved having the job of smashing bottles for recycling.
I also had a job in the tuckshop at highschool, the lady running it understood i couldn't carry drinks very well because her own son was paralised down one side, he went to the same school as us too and was in our same classess.
anyway his mum gave me the job looking after the pies, i just had to put them in the oven and pull them out and bag them. and i got paid too. a few times i carried drinks too and they were those silly paper cups i managed though.
to do that i practised at home in the barbecue area, i'd fill the cups up to the brim of water and walk around there for hours each day. mum used to watch me from the kitchen as i noticed, i think she was proud of my attempts really, that i gave it my best shot. and i think maybe jesus/god noticed too because he has given me a wonderful life.
all i say to you sean is when it gets really tough never give up, just ask me, you might have some advice for me too about what you do with a tremor.
I'm glad you got some of our kiwifruit, wouldn't it be amazing if it was from our orchard.
if i was allowed to send you some i would. we pick again next april to june.
seeya for now.
- At 7:21pm on September 4, 2008,
sheep said…
- Hi Karen
Sorry i havent written for a day or two, but ive been rough i got to the doctors today finnally and was given clonidine to tsake alongside my propananol and domperidone , they are sending me back to my neroligist for Botox inj, hey on a lighter note today my dad came and visited and bought some Kiwis with him for my boy and they are NZ Kiwis, so will let you know what they are likee, i am even going to try one, anyways its 00.30am here and i am away with fairies , so take care stay safe
sean
- At 8:57pm on August 30, 2008,
kiwi beaver 1 said…
- your son is doing well with his growing.
our son tony is 13 and want's to be an orchardist with his dad and uncle. he is already driving tractors with watchful eye of dad.
we have to keep an eye open so he doesn't go too quick.
i hope you get back on your bike soon, the best thing is to practise first. i used to ride a skooter before i was married as it was cheaper to run around town on that than a car, especially when it was hard finding jobs.
before i left home i used to wonder all the time what am i going to do with a tremor and beable to get a good job in a small town,.
but it's amazing what jobs come along that you can do if you want it. waitressing was obviously out, i'd be ok carrying plates but drinks well the customers would end up with empty glassess LOL. and waitressess carry many plates at a time now, that is just to scary. I think they are clever to carry so much.
you will be anxious and excited getting back out in your boat, but don't be scared to have help, i know in nz most people do that too. go do it and have fun.
i love leading rangers but do struggle with talking to groups at ceremonies etc, so i hand that part over to the other leader.
I just started rangers in april so have done some mountain and bush walk courses as that is what i want to do with the girls who want to do bush walks. evidently they haven't been able to do expeditions because our other leader doesn't like those. so that is good i am. and i will drag the other leader along too because she would love it.
i must get out to my roses as it is coming into spring here and it's been too damp to do anything in the garden except the odd spraying of weeds.
i have some veges growing and i got heaps of tomatos in the last summer.
first time i ever got great tomatos since my flatting days in the 80's.
anyway better get going.
today is a good day.
karen
- At 8:20am on August 30, 2008,
sheep said…
- Good morning , i didnt realise Kiwis used to be called Chinese Gooseberries , i will have a look next time we go shopping and find NZ Kiwis and let you know how we get on.
My son is in his growing stage hes done Strawberries & Tomatoes and at present he has corn on the cob growing, i like roses we tried to grow them several times here, but due to kids being young then and the good old english weather they didnt last more than one season, i bet they look nice in an orchard scenario and blend in well , 50yrs and still going strong thats brilliant.
Thats excellent a family business thats still going today, i left school and became a mechanic and body worker, but the competition was so huge in the area i lived that i then found other careers to do, but i still did all my own car repairs and body work, im currently restoring a Kawasaki z440 1979 motorbike my children bought me as a present many many years ago, and finally now i have the time to do a little each day, one day i hope to get back on 2 wheels and ride it, even if just up and down the back road, then i will leave it for my son, ive always been bike and car mad, and almost grew up glued to the back seat of a motorbike lol.
With that many people there your dad was obviously a very popular man that is sadly missed each and every day, i have friends like that are gone, but never forgotten, quite often when things seem a bit to haywire i go sit up the cemetry and have a yarn with my nan, i think people think im mad lol, but i am sure she listens.
My wife michele writes the names and numbers on my fishing boat and although not a sign writer ive told her many times to give it a go as she has a natural eye for it, like you i sat there many times thinking , what am i going to do, but i went with the my destiny will find me and then i will know what im meant to do style way of thinking and ive done loads of jobs and dogs & fishing were the only ones i loved enough to go the extra mile for, my boat should be back in the water in 7-10days and i am hopping that i can get back on her and start to earn again, im just keeping my fingers crossed that my body allows me to do it, the rules & regs are sooo strict now, ive just had a letter from our Sea Fisheries inspectors stating i am no longer allowed to go to sea as a singlehander, but have to be accompanied by another , ive had crew members every year,but this year i had planed to go it alone for what was left of this season (Nov) and start again with new crew next year, so i may have to forget the rest of this season and take the winter off and start again next March.
Thats brilliant you can do something like that with the Brownies thats a good confidence boost and good for the children as well, i used to be giving speaches and on our local news Tv quite alot , but since things got bad ive pulled back from all that now, but good on you for that and keep at it for as long as you can, its nice to give something back to your community.
Yeha the Gilberts thing is a pain, but like all these things and peoples woes our goverments never take notice of anything they cant get rewards out of, i expect one day they will have most of these disorders under control, all we can do is stay positive and hope.
What annoys me is they will spend billions and millions on many many useless things in life and build buildings for 1 event, when id rather see the money goto health scientifics and cures for deseases , something that helps people , not entertain people.
Yep keep safe & well and best wishes from us here Cornwall.
P.s. Please send some sun over
Sean
- At 4:51pm on August 29, 2008,
kiwi beaver 1 said…
- sean, that is so sas that you can't do your rescue stuff with the dogs, you were great at it to. life can be so unfair especially when you see so many people throw it away.
tell your son to look out for nz kiwi not as much from italy or aussie or california. we started those countries going though.
It used to be called chinese gooseberries but they didn't know what you could do with it.
the family who was one of the first to grow them to sell were living on this orchard as it used to be a dairy farm.
another cool thing is john and i when we first got married and living on the cattle farm, we found we both wanted a rose garden, so we grew one, then a year later we brought the roses with us to here in the orchard and there was two huge rose gardens as the previous owner loved them too. some of our roses are now over 50yrs old and still bloom. He was worried selling the orchard incase we pulled them all out, i said no way we love roses.
2003 was a terribly sad year but also a humbling one, when we had dads funeral we couldn't believe how packed the church was there was no room for my son to sit next to us, so he sat in between my uncle and aunt, mums brother and sister.
then when we went outside there were heaps of people out side too, it was amazing because i knew them all.
mum and dad owned their own panelbeating business and worked together mum in office and parts and dad rebuilding and paneling cars. my youngest brother is now boss down there with mum still in the office and parts. but my brothers wife will one day take over as mum is going into bed and breakfast at her home beside lake Taupo.
dad built the workshop himself and did all the signwriting and everything like that.
my sister is also asignwriter and at times when i was still at home wondered what i'd be with this blasted tremor.
everyone had gifts they could use and i felt i'd missed and maybe i was under the table when god was giving them out LOL.
anyway i loved one of my jobs babysitting kids, kids are fun to be around, so guess what i do that too, i lead brownies 7-10yr girls (like scouts) then i lead guides 10yrs-14yrs now i am ranger leader 14yrs to 19yrs. my daughter wanted to be a brownie in 2001, and so i took her and found the leader was finishing and there would be no more brownies unless another leader came along, so that was where i came in, i was pretty nervous at first as there were 17 girls. but i had trraining with another leader and love it to bits. it gets me out there and people see my tremor in motion and don't seem to worry.
to get girls motivated i just say if i can you can.
the gilbert syndrome sounds a strange one and hope you can find what helps you, is it painful and what syumptoms do you have, i'll have to google it and see what that's about.
my dads middle name was gilbert.
anyway keep smiling and know we care about you all the way from kiwiland.
karen
- At 6:39am on August 29, 2008,
sheep said…
- Hi Karen
Yes our pets mean soooo much to us we treat them as one of the family and never as a pet and thats probably why its so upsetting when the inevitable happens,
2003 was a tough cruel year for you and i am glad you had the strength to cope as ive seen so many over the years that couldnt cope and forcefully left this planet, and it sounds to me like your Dad was both a caring and a brave man, and i expect he misses you also, but i bet hes looking down on you know well proud of what you are acheiving and doing and you should be proud of yourself too.
I started my family tree as a funeral home book from Mitchigan appeared in the family from my uncle who had it tucked away in his attic with photos of my great grandad in a coffin (not very nice and cheerful) and a whole list of names, so after alot of hours searching and through anncestry . com i found loads out, like where he worked , who he married, some went to Canada , some stayed in MI and only 2 came back to St Ives, i still have a long way to go, but last month a lady went to the cemetry and photographed the headstonee for me that i had an old picture of in the book when it was first laid, but his wife was still around then, so the new photo showed that no one was tending the grave anymore , but gave me the date she past, so i was able to build a bigger picture.
Alot of my shipping info came from the Ellis Island website that gives alot of information on what they call alliens in Canada & Usa waters, port of travel from & To and ships name & photos.
Gilberts Syndrome is a liver & bilirubin fault they say that it has no symptons whatso ever , but after i did some researching in the Us they list alot of symptons that are associated and repoted with it, many i have so i went back to my Nero & Docs and unfortunately here in the UK they arent keen on learnign new stuff , they just follow the books they have, my Nero when i asked what my prognosis was and what and how they will treat this ET & DT , his reply was " I Dont Know I m Sorry" , and for the last 4-5 yrs i havent a clue on any of it, but now thanks to sites like this i am learn something.
Thats great about the kiwi orchards a dream come true, i bet you was well chuffed when the oppertunity came along and so you should be and its brilliant you grabed it with both hands and achieved what youd always wished for , congrats on the 17yrs of marrage.
I have been married for 4 yrs now and we met and got together 10yrs ago now i have 1 son 7yrs and a step-son 21 yrs and a step daughter 11yrs they are hectic at times and exhaust both of us lol.
Yeah i loved dog handling, just before i wet down hill in the last 2yrs i was training my German Sheperd " Star" to track and search for unconcious people , up until i stopped 6 months ago he had a success rate of 100% never failed a hit on both alive & deceased people , he has been trained for air scenting instead of line ground tracking, which means if you hold a piece of clothing for him, he wont track that 1 person, but if you put him in the search area down wind of last reported position he will find everyone in that given area, we did a trail here a while ago 0f 5 people hidden in a 1 mile square area and 1 of them thought theyd be funny and throw their coat up a tree , he found all of them and the coat, so he has a good nose lol, its a shame we had to give it up, but i was by this time un able to do the otherside of the work i.e. the cliff work, and i didnt want to put myself or Star or my fellow team members at risk.
But i gotta behonest if i had my time over again id change nothing.
My 7yr old son absolutely adores Kiwis, hes a big fruit eater 5-6 pieces per day, my dad his granddad, has to sit there peeling them everytime we visit and they sit there eating them together, its his favourite fruit , if we lived there he probably eat the tree given the chance..
hope youve had a good day
Sean
- At 5:23pm on August 28, 2008,
kiwi beaver 1 said…
- our dog dino died in 2003, along with our cat leo who had a cancer on his ear, we had to put leo down and dino died in his kennel.
that same year my dad died too, he got cancer too aged 64.
when i started ancestry in 2005 i found out that dad had been right all the menfolk on his side die in their 60's but his dad died aged 72 cancer. alot of my ancesters males on dads side died aged 64. i remember as a child we tried to get dad to give up smoking he did for a while , because we didn't want him to get cancer, when he started smoking again he said i won't live past my 60's anyway, we were mortifyed, but he just laughed and said he wanted to die young. so he did die young and i miss him terribly but know he's happy he died young.
i started ancestry because in 1977 we got given a family book, and i just couldn't put it down i was 11 then, and once we got internet just a few years ago i thought i'd give it a go.
I am so pleased because i have found all of dads line, he never bought many photos when he married mum and we didn't know his parents as they died just before and after i was born. grandad first and grandma after , she had alsheimers.
I found one of dads uncles had parkinsons, so i am not the only one in the family with a movement disorder after all. depending he got shakey.
i found dads grandfather he never knew went to alaska goldfields to make a fortune and didn't, but he sent letters to his family wife and kids to say he made it there safe. it is all in papers past.
then when he came back he didn't make a fortune and left the family, my gran was only 5 and he just disappeared, his wife searched for him for 9 years.
so there is no death certificate for him,and no known wearabouts of him now.
you look in shipping passenger lists and that gives quite a bit of info and i belong to genes reunited so have been in touch with other rellies that have more to the tree.
what is gilbert syndrome? i have never heard of that one.
and you will find something more you can do with your son.
I just do what i can, as i have my drivers liscence thank goodness, i take the kids 10 min drive to the beach, and to soccer games, they go all over the district for that, so i am getting used to driving through traffic lights and on motor ways now, i used to dread them incase i made a mistake. but it's just practise.
i know what you mean by things like soldering, when i was at school in craft, the teacher would get other kids to help with that sort of thing for me, i made some jewlery, and the teacher was great doing that for me with no big deal made. I was so appreciative of that.
One job i applied for was in the butchers and just serving and selling meat, but you had to slice meat as well, there was no way i was going to get that job, the boss was scared i'd slice my hand, eek!, i got a sewing job instead and was sewing for a few years until the stretchy material came in, but the boss was good as she gave me a different job as junior superviser. cool eh but then we were made redundant, fiji made the clothes cheaper they thought so the work went there.
i was unemployed for only 3 months, which was lucky compared to others unemployed for years. I got a postie job part time but it was awesome just delivering mail.
then i met john my hubby and he drove a RX7 car, and is a farmer, we got engaged 6months later and married nearly a year after we got together, i say that because i met him years earlier when i started badminton at aged 14, but never went out with him until 10 years later. the amazing part is he lived on a farm out of town and the only place i saw him was badminton. I didn't like him at first because he talks alot. but when i went out with him he was so lovely and didn't care one single bit about my tremors.
people thought we were mad getting married so quick but it just happened that way, and we've been married 17 years now.
and as it was a quiet dream of mine to be in a kiwifruit orchard which i spotted when my family went camping in this area when i was 16 -21 i'd see rows and rows of kiwifruit on our way to the campsite, dad would ask me what i was staring at, i just was amazed at it all, and it's what i wanted to do but didn't know how it would happen. as we lived 3hrs away. but a year after being married it happened, the beaver family(us) decided farming was not worthwhile anymore lets go into kiwifruit, i couldn't believe it at first because i hadn't told anyone except a few mentions here and there, but i hadn't told john and his family.
this is truely amazing and i think it is my faith in god, we are also on one of the very first orchards to be built in the bay and it's had 2 owners, the ones who sold it to us and us.
it's a miracle i reckon. God has given me everything i prayed for when i was a teen asking for him to help me have a great life if i have to live with this awful tremor. .He did just that. I just didn't know it was going to happen in just a few years.by the age of 26 i was here , that's 10years after i first saw all the fruit on our way on holiday with my parents.
good things can happen to us just because we have tremors doesn't matter, if you dream of something you will have it, i think yours is handling dogs, you'd be quite good with animals i reckon.
they would probably ease your tremors too.
let me know what you think.
karen
- At 8:49am on August 28, 2008,
sheep said…
- Hi Karen , yep thats totally wierd, i could never drink coke as a child and i lost my best friend 3yrs ago she was my partener as i was a dog handler she was called Tasha , broke me heart lol, she was 13 too, and when i first read the word Gilberts ione of my complications to the rest of my problems is Gilberts Syndrome lol.
As for the research yep i like to lose myself into that and i find it very interesting, as soon as i feel a bit better and im up Redruth way next i will see what i can check out for you.
People are sometimes cruel without even knowing it, but i think its more to ignorance and ill manners (sorry i always talk straight) , anyone that mentioneds anothers infliction while they are present is cold hearted, its different if we as people mention it first, i try like you to break the ice with the odd comment , i am long term disabled now and have just been signed off until 2011 with notification that it willcontinue after that (which i hate at the age of 38) and they sent me to a work placement to repair PC's & boat electronics all was going well until i needed to use the soldering iron, i was laughing so hard i couldnt judge wether the tremors would stop me soldering or the laughing, but i made sure i made a joke of it in front of all the other staff and yes we all got on fine, but it was the end of that as a career but thats how i deal with it, but i do tend to shy away from people and big groups and have become a bit withdrawn over time as people dont understand and just make up their own conclusions and unfortunately in todays society nothing is considered out of bounds for a joke.
Its good you get out and about with your children and its good that you enjoy this as time flies so fast, my boy is precious to me, i just wish i could more with him, anyhows , on a lighter note what made you decide to do you ancestry ? mine was because i already knew they had gone to the states and i wanted to see who was who, who went where , and what they did.
sean
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