Orthostatic Tremor

I am very lucky in many ways Nonnie I having a very loving and caring family and my wonderful DH of 44 years who will do anything and everything for me.Yes you are rightpetallus I am still able to enjoy our grandchildren and their developing sense of humour. As long as I keep my sense of humour I won't go far wrong.

Sorry you have so much to cope with HMH. Pleased you can still enjoy seeing your grandchildren.

They sound lovely, you are very lucky HMH

You are quite right Nonnie .I can't get down and play anymore. I sometimes use a walking stick in the house, so at least I can pretend to be Nanny McPhee . Our three grandchildren aged seven five and five, love it when I bang the stick and pretend that some sort of magic will happen if they don't do as they are asked. The only trouble is that they use it too to cast spells for basically anything that they want.It is lovely though that even at their young ages, they understand that Nanna struggles and they all do as much as they can to help me.

Sounds horrid and seems to mean you can't get down and play with the GC, so sad.

I hope the meds help and that you can get something done to ease the back pain too.

It is so easy for medics to blame us when they don't know what is wrong. Shame they can't admit they don't know instead.

Thank you. I feel better now that I know that other people care about my problem.

HMH I am so sorry for your distress but the good thing is that now you have a diagnosis you can get the appropriate treatment and care. I empathise with you on the spinal arthritis front. keep chatting away to us on here - don't bottle it up

Thanks everyone for your kind messages. I have actually phoned the physio , but always got the answering service. He as yet has not replied. Actually I will phone again now! Let's see what happens?

I'd print out a fact sheet about this condition and send it to your hospital physio. They obviously need to gen up on this condition before they make insulting remarks to their clients.

Sorry to hear about this HMH but at least you now know what us wrong. Hope the mess help.

It does help to know what is causing your distressing symptoms , I have never come across this before , it must be very rare I hope that the meds help (((((((((((((((hugs))))))))))))))

At least you now have a diagnosis because there is nothiong worse than being told that it is all in your head, get on with life. I have never heard of that particular condition- it must be very rare as you said. Good luck for the future

Thank you loopylou and granny activist. I didn't know about it before my diagnosis. The meds may or may not work. I use a wheelchair now. I cannot go anywhere without knowing that there is somewhere to sit. Going to our sons house when the children's toys are about is awful because I have to have a straight and clear area to sit down, any toys in the way are awful.

Hello HMHNanna I haven't heard of this condition before. It's fortunate that you knew enough and had the means to get a second opinion so that you could gain an understanding of this grim sounding condition.

That sounds exhausting HMHNanna, something I've not heard of before.
I hope the medication works, how long does it take to kick in?
Back pain is miserable too, as I we'll know.
I do hope your symptoms settle down soon, take care x