Mrs farringdon

[mrsfarringdon]

Hi

Its my first time I've wrote on your site. I've been reading your site for about 10 months now and find it brilliant. My dad has psp for about a year. I've moved in with him and gave up work to look after him.its hard work but reading all your stories I never feel alone. its got all the questlons and answers what I think about every day.

Dad doing good apart from the chocking still walks with help but manages most things by himself just takes 3 times longer. Hope to add more soon when I get used to working this computer once again thanks to you all x

[peterjones]

hi mrs farrindon welcome to the site i think you will find it takes most of us 3 times longer to get things done not much good for the carer but ok for psp person who cannot be hurried ive found out because i have psp i have had it a number of years now anyway mate i say again welcome its a good site4 with a lot of good people on it and you can let your hair down on here nobody minds one bit so hope to hear from you again mrs farringdon good luck with the computer and lots of luck to your father god bless him peter jones queensloand australia psp sufferer

[dorothy-thompson]

dorothy-thompson

Hi mrsfarringdon, welcome to the site and, as a carer, I can only re-iterate peterjones' sentiments, it helps keep you sane!

I have found more answers, practical suggestions,help and fellow-feeling on the site than from ALL the "professionals" put together, they're only in it to keep their jobs going.

Sorry if I sound cynical, but that has been my experience to date.

good luck and keep blogging.

regards

dorothy-thompson

[jillannf6]

hi

i am JILL I HAV E PSP and am still here blogging

(dxd in dec 2010)

read about me" to find out more

and any tiem you need to get a question answered or hav e a rant we r her efo r you

lol JilL

[Kathy]

I would like to add my welcome to the site! Hope you find it a useful place to come. It doesn't have to be a problem or question - sometimes people share things to make you smile or brighten your day - whatever it is - even if you just want to have a "rant" and get something off your chest - this is the place to do it! No-one will judge you - they've almost certainly "been there, done that" and know exactly how you feel!

Hope to see you here again soon

love

Kathy x

[laroux]

Glad you have found "this place". I have done more reading than writing here too, but it really is a God send to have the support and understanding. Power to you for being there for your Dad. My husband has PSP, and I am still having to work full time, it's challenging at times.

joan

[coleen]

Hi Mrs Farrindon. I am so glad you eventually "blogged". A few years ago I was desperate to find someone who I could talk to about my Dad's PSP. I found it in this site. Everyone has been fantastic to me though the years. Unfortunately my Dad passed away last Friday, but I will remain on the site to assist others, either caregivers or patients, battling with this terrible disease. God Bless. Stay strong, and hope to hear from you soon. Keep us updated.

Love Coleen - JHB South Africa

[marytea13]

hi I'm marytea13 & I live in Perth Western Australia. I am getting good support here. I played bridge yesterday & had a taxi from home to the bridge club for A$16 thru a voluntary organisation that is subsidised. The same organisation visited our home & did garden maintenance so my husband who is my carer aged 84 will not have to do it. Main problem is after effects from Sinemet tablets at least I am not nauseated now nor vomiting from them but I get hot & cold then sweat even put cold pack on my head also take Motilium to counter Sinemet. Hope this info is of benefit.

[jimandsharynp in reply to marytea13]

Marytea, My wife is taking Sinemet (carbadopa-levadopa). We don't notice much good from it but perhaps the amount of help is very small. So for now well stay on it.

Jimbo

[marytea13 in reply to jimandsharynp]

Hi Jim my neurologist only put me on Sinemet to help my walking & perhaps it has helped. I was on 1 tablet x three times/day but in January he increased it to 2 tabsx3 times a day. Perhaps as u write the help may be only small. I see him again in late May so shall post what he finds then. He was just so busy/swamped last January with a refugee family the all seemed to have neuro physical effects. Meanwhile I shall continue with Sinemet. Cheers

[mrsfarringdon]

Hi

My dads been on sinemet for about a year but he's just had dose put up about 10 days a go and I've noticed quit a difference in his movement / walking. last night he managed to walk to stairlift only holding one of my hands his balance has well improved but what works for some dosent work for all .

Must go having a day off first one in ten days "yippee" it I'll feel good just to get outside in fresh air hope he sun shines .

Bye x

[NannaB in reply to mrsfarringdon]

Hi Mrs Farringdon,

It's good you have joined us. I read the site for ages before I wrote anything but I always felt a bit as if I was snooping and listening in to others conversations. Now I feel part of the group and have been helped enormously. I'm on "holiday" at the moment in sunny Boscombe with my 96 year old dad, my 65 year old husband with PSP and my brother and his wife to help. We've found an amazing ground floor flat catering for folk with disabilities. It has three double rooms with ensuite wet rooms and another double room with large shower. There are 2 riser beds and one pro former bed with rails if you want them. There are also 2 rise recliner chairs in the lounge. It even has 2 purpose built raised toilets, not the plastic raised seats you usually have. Provided are walkers, hoist, comodes, wheeled trolly, adapted cutlery...you name it, we have it. It has made coming away so much easier.

Enjoy your day off. You need it. The sun is shining here so hope it is where you are.

Best wishes.

Nanna B

[larches]

Hi mrs Farrington apologies for mistake I earlier message its your Dad not your husband may he R I P