WHAT I AM NOT LOOKING FORWARD TO IN THE UK

[shasha]

HAVING READ A POST FROM SOMEONE SORRY I CANT REMEMBER WHO ABOU THE LACK OF NEURALOGICAL HELP IN THE UK .. I MUST SAY HOW MARVELLOUS THE HEALTH SYSTEM HERE IN FRANCE IS .... IS AW MY NEUROLOGIST EVERY SIX MONTHS SND HE WSD UNFAILINGLY GOOD AT BEING POSITIVE AT TELLING US THAT THERE WAS RESEARCH GOING ONAND THAT AS SOON AS HE COULD HE WOULD LET ME KNOW IF I COULD TAKE IT AS WELL AS EXAMINING ME THOROUGHLY AND REASSURING ME THAT I HAVE THE SLOW VERSION OF PSP .. I HAD MY FIRST FALL IN 2006 .... AND I AM STILL HERE ALTHIUGH MY EYES ARE PRETTY DREADFUL I ALSO HAVE BEEN HAVING PHYSIO IN MY OWN HOME FO THREE YEARS HREE TIMES AWEEK WHICH HAS DEFINITELY HELPED ME TO STAY ON MY FEET . SO I AM NOT LOOKING FORWARD TO HAVING THE NHS LOOKING AFTER ME AGAIN !!! POOR OLD NHS I HEAR YOU SAY AND I DO CONCUR WITH THIS BUT SURELY THERE MUST BE A BETTER WAY OF TREATING PEOPLE WITH PSP? THIS IS THE LATES PICTURE OF OUR GORGEUS GRANDSON WHO I WILL MISS DREADFULLY AS WEKL AS MY DAUGHTER BUT I HAVE TO BE BRAVE FRED TELLS ME AS SHE WAS 35 BEFORE SHE LEFT HOME PROPERLY - ITS HARD THOUGH XXX

[easterncedar]

What a sweet picture of an adorable little boy!

I hope you find the health services in Wales are good and supportive. It does seem to be a question of luck and location from the stories we hear from the UK.

Same here, really. My guy has a wonderful GP, but I haven't been able to find and keep one. The waiting lists for the ones who stay in our area, including his, are 5 years long. I managed to see the most recent one three times, a record for me in the 30 years I have lived in Maine, and she is leaving town next month. Good thing I don't need much care...yet. Touch wood.

Good luck, Sharon. I'm always glad to hear from you. Happy new year in your new home! Love, ec

[shasha in reply to easterncedar]

THANKS SO MUCH EC IT IS ALWATS GOOD TO HEAR FROM YOU TOO XX

[Heady]

Hi Shasha, Steve had a personal trainer come to the house twice a week. Before that, he attended her class for people with Parkinson's at the local sports centre. Amanda was part of the Arni project. Giving exercises for stroke victims. She always felt, the services helped anyone with neurological problems. Yes, we had to pay for that privately, but we both felt it was worth every single penny.

Feeling for you, saying goodbye to all you love.

Lots of love

Heady

[Yvonneandgeorge]

Sasha I am sure the NHS will be ok in Wales, we are very lucky were we live, xxxxx

[Georgepa]

Don't listen to all the horror stories about the NHS we have had some brilliant help.V's consultant insists on seeing her every three months and the last time came to us at home as she said for us to go to the hospital was a pain.Our local GPs have been good to .I get a call every two weeks just to check on how we are doing so it's not all doom and gloom .District nurses OT etc all helpful .Yes occasionally we have blip everyone does but you don't need to be fearful.

[shasha in reply to Georgepa]

THANKS GEORGE FOR YOUR COMFORTING WORDS .. I AM SURE IT WONT BE AS BAD AS I THI]NK IT WILL-- MY LOVE TO YOU BOTH XX

[Kevin_1]

Hi Shahsa

We, personally, have the same as you in France.

To some degree it is a post code lottery.

When you get here get your GP to refer you on to tertiary Neurologist, rather than a 'local' secondary one. Though some of the secondary level neurolgists can be superb too. It all depends on their experience at managing PSP side symptoms.

You will find quite a few centres of excellence here.

Welcome home.

Kevin

[shasha in reply to Kevin_1]

THANKS KEVIN WHERE DO YOU LIVE ?

[Katiebow]

Hi Sasha, we have had reasonable support from GP's and other agencies but the neurology side of things hasn't been such a good experience for Ben. Luck of the draw I think. The hospice have been wonderful in emotional support for both of us and I don't know how we would have managed without that. My sister lived in France for a while and was very impressed by the medical treatment there.

That photo of your little grandson is adorable and I've no doubt you will miss him but guess they will come to visit as often as they can. Ours live 3.5hr drive way and don't get to see them enough, thank goodness. For Skype as they know their granny and grumps well through constant contact.

I wish you all the best when you move back to the UK and am sure you will soon settle back although the thought must be daunting.

Love Kate xxx

[shasha in reply to Katiebow]

THANKS KATE - I AM HOPING THERE WILL BE A HOSPICE WHERE WE WILL BE LIVING - IF ONLY TO GIVE POOR FRED A BREAK XXXX

[jillannf6 in reply to Katiebow]

i agree with you all]

lol jill

xxxxxx

[Yvonneandgeorge]

Here here George I agree with you, can't fault the proffesor at the hospital. Xxx beautiful baby xxxx

[cabbagecottage]

Shasha it will be bitter sweet and you must feel very apprehensive .

As you know the NHx isn't what it use to be but its not all bad .

The same goes for social services but ONCE you get into the system the help is there .

We live in Wales and have been having care for John for 4-5 years . Started off slowly with one visit a day from. Social services care . At present in Walws any care you may have is £65 a week . That's however many carers and calla you get.

If you have little income you won't pay at all ..

You have access to Ot assessments and AIDS . For free .

Depending on positition carers allowance and attendance allowances .

In more advanced cases you get NHS continuing health care .

I keep John at home with me because of all this help . I am very grateful ..

Of course it's stressful having to go through it all .

I a, sure you must have looked into all of this though . Good luck

[shasha in reply to cabbagecottage]

THANK YOU SO MUCH FOR TAKING THE TIME TO GET BACK AND TO REASSURE ME IT HAS INDEED HELPED A LOT = REMIND ME OF WHERE IN WALES YU ARE .... IS IT NEWPORT? LOVE F5ROM SHARON XXX

[cabbagecottage]

Yes Newport Gwent . ROgerstone .