Only 36 yrs old

[sue134]

Hello everyone
Its been a long time since I have posted anything but I have always tried to keep up with all advice given to others.
As some of you will know it is not me that suffers with O.T. but my son who is only 36 years old?
He also has to deal with C.F.S. and Fybromyalgia which causes him lots of pain.
Question
Is Garry the youngest on this forum ?
What can he expect in later years ( truth please ) as I am his carer

We are still fighting for him to go onto disability but no matter how we try these illnesses are still not look on as causing any hardship in life.?
His O.T. effects him not only while standing but sitting down and the only relief he gets is when he is laying down.
Trying to get the works and pensions into stepping out of their little boxes and smell the coffee is almost impossible even though we have had support from Rheumatologist / doctor and comformation of having O.T. BUT this will not stop us in getting what we feel is our right.
HAS anybody else had the same problem?

Sue

[RichardS]

Hello everyone
Its been a long time since I have posted anything but I have always tried to keep up with all advice given to others.
As some of you will know it is not me that suffers with O.T. but my son who is only 36 years old?
He also has to deal with C.F.S. and Fybromyalgia which causes him lots of pain.
Question
Is Garry the youngest on this forum ?
What can he expect in later years ( truth please ) as I am his carer

We are still fighting for him to go onto disability but no matter how we try these illnesses are still not look on as causing any hardship in life.?
His O.T. effects him not only while standing but sitting down and the only relief he gets is when he is laying down.
Trying to get the works and pensions into stepping out of their little boxes and smell the coffee is almost impossible even though we have had support from Rheumatologist / doctor and comformation of having O.T. BUT this will not stop us in getting what we feel is our right.
HAS anybody else had the same problem?

Sue

I haven't had the same problem, Sue, but I know a lot about CFS. Email me priavtely on richardsenior@btinternet.com if you want to.

Richard

[sue134]

RICHARD
I have emailed you

[gloria]

Sue and Richard: Richard it is very kind of you to help Sue. Sue in answer to your questions "is Garry the youngest on the forum?" According to the forum survey info:
10 to 20 yrs---3
21 to 30 yrs---22
31 to 40 yrs---40

"What can I expect in later years ?" Sorry there is no clear answer when there are multiple health problems. Perhaps you should add a neurologist to your team of doctors. I see you live in the UK so I suggest that you contact the National Tremor Foundation and have them recommend a neurologist for Garry.
Telephone: 01708 386399
email: tremorfoundation@aol.com Best wishes, Gloria

[sue134]

Gloria
I was under the impression that OT usually only effects the over sixty's , it just shows that I still have a lot to learn about this illness.
My son is already seeing a neurologist and his opinion is it can be controlled - and yet most of my research has brought me to believe that this does get worse over time.
I was hoping if I raised the question on here! that other people would offer their views on how O.T. as effected them over the years.
Thank you for replying
Sue

[Lynda]

Hi Sue

I first noticed the symptoms of OT after the birth of my first child when I was 29 years old - although I am now nearly 50. However it was only about 4 or 5 years ago that I eventually made a self-diagnosis from finding this website and then had it confirmed by a neurologist. Until then I had been told that I was suffering from anxiety and just needed to go home and relax!

As far as progression of the tremor is concerned, my standing time has definitely decreased over the years and now I suppose I am only able to stand for a minute, at the most, unaided. However my ability to deal with the disorder has definitely improved - and, in facing up to the problems involved and finding coping strategies, I think I have a more positive outlook on life. Being able to share and discuss problems that we have in common on this website is also a tremendous help. We are not alone!

I realise how hard it must be for you as Garry's Mum - especially with his additional health problems - to know how to help him through it all. Please feel free to email me if you just want someone to chat to.

Best wishes

Lynda

[sue134]

Thanks Linda
I have P.M you

[DaveW]

Comments removed.

[sue134]

Dave
I have emailed you
Thank you
Sue