Where is everyone from: I was just wondering... - PSP Association

PSP Association

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Where is everyone from

nellienoonoo profile image
β€’98 Replies

I was just wondering where abouts everybody lives i am in Surbiton Surrey UK

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nellienoonoo profile image
nellienoonoo
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98 Replies
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shasha profile image
shasha

i am in sw france LIMOGES TO BE MORE PRECISE .

Folliott profile image
Folliott

I am from Ontario, Canada

GAD42 profile image
GAD42β€’ in reply toFolliott

Where in Ont? My Husband & I also live in Ont. Rog has had PSP for at least 6-8 yrs.

Folliott profile image
Folliottβ€’ in reply toGAD42

Midland, Ontario. North of Barrie on the beautiful shores of Georgian Bay. Jim was diagnosed with Parkinsons early 2012 and PSP this March. He is on a very fast downhill slide at this time.

GAD42 profile image
GAD42β€’ in reply toFolliott

Folliot, I am from Sudbury & my Husband, ROGER was diagnosed in 2014 but we know he had it since 2009 or so. Roger is at at a LTF & despite all the care he too has been sliding. My email is gadore@hotmmail.ca

Folliott profile image
Folliottβ€’ in reply toGAD42

Yes, I understand as I am wearing down myself. It is very difficult transferring from bed. It is a straight pull dead weight. I am going to have to give in soon but there are very few facilities around here. I am trying to hold on but he has lost more weight and some days are worse than others. More bad days than good days now. I am having to puree most of his foods now and supplement with ensure cocktails. When did he go into LTF? My email is jmfolliott@sympatico.ca.

Christine47 profile image
Christine47

Los Angeles, California USA

Yvonneandgeorge profile image
Yvonneandgeorge

I Live in hertfordshire, bishops stortford near stansted airport xxxxx. Anyone live near me would be lovely to meet up? Yvonne xxxx

jzygirl profile image
jzygirl

I live near clacton on sea in essex but home town is northfleet in kent. Janexx

DenB profile image
DenBβ€’ in reply tojzygirl

Hi Jzygirl

I live close to your home town.....Higham, near Rochester.

Roy goes to the Hospice...Elenor in Northfleet.

D

jzygirl profile image
jzygirlβ€’ in reply toDenB

I sometimes wish we was still that way with all the family but hey ho we didn't expect this poo to land in our lap so we just have to get onwith it. Janexx

I am from a rural area near St. Louis, Missouri, USA.

abirke profile image
abirke

NW Arkansas, US

AVB

Trish-dave profile image
Trish-dave

I live in Courtenay B.C Canada

I am in Wokingham Berkshire.

Whazel profile image
Whazel

I check out the postings on this site to help me understand the disease my younger sister has been diagnosed with. Diagnosed two or three months ago, probably had for at least two and a half years. I find this site very informative. We live in Hampshire, UK.

NannaB profile image
NannaB

Kent. Near Tunbridge Wells.

jzygirl profile image
jzygirlβ€’ in reply toNannaB

Where my daughter lives. Janexx

NannaB profile image
NannaBβ€’ in reply tojzygirl

Wow! If ever you come to this area and fancy meeting, just message me.

X

Kathleen52 profile image
Kathleen52

Mackay, Queensland. Australia

showaddy profile image
showaddy

We live in Huddersfield, West Yorkshire

vlh4444 profile image
vlh4444

Kent near Sevenoaks. Quite near NannaB. We are fairly new to this area though as we moved from rural Mid Devon at the end of 2014.

Auntiemary profile image
Auntiemary

Shetland isles

DenB profile image
DenBβ€’ in reply toAuntiemary

Is it quite remote, where you live on the Shetland Isles?

DenB

Auntiemary profile image
Auntiemaryβ€’ in reply toDenB

Not really, we live on the mainland about 15 minutes from the airport in the south of the island.

Auntiemary profile image
Auntiemary

Shetland Isles

york profile image
york

Middlesbrough Cleveland

Maxine12 profile image
Maxine12β€’ in reply toyork

Hi York I'm from Stockton on tees, are you a suffer or a carer if you don't mind me asking, just you live close by and it's nice to know there are other people nearby going through the same thing :)

york profile image
yorkβ€’ in reply toMaxine12

I'm a carer how about you?

Maxine12 profile image
Maxine12β€’ in reply toyork

I'm also a carer, I look after my mam who has had psp for around 4 years I think, but was wrongly diagnosed until last September.

york profile image
yorkβ€’ in reply toMaxine12

They originally thought my mam had Parkinson's approx 4yrs ago too do you have any other family that helps. I've two sisters and a brother. Unfortunately my brother is also disabled and lives in the same house as my mother but still does his bit to help bless him

Maxine12 profile image
Maxine12β€’ in reply toyork

Aww bless!! Yes I have 1 sister and 3 brothers. My youngest brother is 21 and lives with my mam, he finds it hard as he is the one who is there the most to pick mam up off the floor when she falls. I now only live a couple of doors down from them so I can help as much as I can, and the others do help to, it's just so awful to see your mother deteriate before you :( but we do our best and try and laugh about silly things every day. I hope you have good support around you. This site is really good,especially when you need information you can't seem to get anywhere else x

york profile image
yorkβ€’ in reply toMaxine12

Yes this site is brilliant like you I live on the same road but as my brother wasn't able to pick my mother up we got calls to go and pick her up. Mam can no longer get about unless aided and can only go out in a wheelchair now. we have carers in 4 times a day and one of my sisters is with her 4 days a week and I do the others 3 but find it very hard whilst also doing a full time job in the last month I have cut down to 4 days to help. My mother is still quite upbeat and as you we laugh about the silliest things .the next stage is getting the bathroom turned into a wet room which will help us tremendously.

Maxine12 profile image
Maxine12β€’ in reply toyork

I'm glad you have help, it's defiantly not easy when your also working. we had mams bathroom turned into a wet room it's so much easier. You look after yourself York :)

HilsandR profile image
HilsandR

Hi - I am in New Malden, Surrey, UK. Have not posted yet but am finding the site very helpful whilst coming to terms with my husbands diagnosis - he was diagnosed in February this year.

nellienoonoo profile image
nellienoonooβ€’ in reply toHilsandR

Hi your very close to me

HilsandR profile image
HilsandRβ€’ in reply tonellienoonoo

Hi - yes we are almost neighbours. We enjoy taking a picnic and sitting by the river on the Queens promenade on the Portsmouth Road and of course shop in Kingston quite a bit. This hideous,fairly rare illness makes you feel you are the only person in the world dealing with it so it's strangely comforting to know there is someone close by tackling the same thing.

nellienoonoo profile image
nellienoonooβ€’ in reply toHilsandR

Hi -i live near the river its lovely there.my husband was diagnosed in May this year it has taken 4 yrs to get the diagnosis My husband goes to Atkinson Morley.He has'nt walked for 2 yrs his balance has almost gone now. and his speech is getting a bit slurred.this disease is a nightmare.

HilsandR profile image
HilsandRβ€’ in reply tonellienoonoo

Hi - sounds familiar in the length of time it took for your husband's diagnosis. We struggled to get someone to listen for 4 years and as far as the medical people were concerned if my husband's blood tests were ok then he was ok? So we went from nothing wrong with him, then to Parkinsons, then Lewy Body Dementia to finally PSP. The delivery of the diagnosis was quite blunt - when I said to neurologist I had never heard of PSP he gave us website and told us to go home and find out all we could about it? He also referred us to Neuro rehabilitation team to get sorted out with a weighted walker - my husband has to date never fallen so what possessed him to suggest that still baffles me, Needless to say was very unimpressed with such lack of empathy. We then had to wait 9 weeks to see specialist nurse at St George's, who has been very helpful - we see her every 6 weeks. My husband can still walk, albeit he is slow. His cognition is poor, this was one of his first symptoms along with extreme fatigue and always cold and these were the symptoms we kept presenting with. His double vision is bad and we are waiting for an appointment again at Kingston eye hospital. He had prism lenses in his specs 3 years ago prior to diagnosis, but following 2 cataracts ops needs a new prescription for new specs but can't get this done until prisms sorted out. To get anything done seems to be a battle - it's been 5 months since cataracts done. Do you get help with looking after your husband? I think we are lucky here in the UK in that the support seems to be available - once you get the diagnosis and the trouble with that is by that time we have already gone through a stressful journey with no support. Hey ho - one day at a time.

DenB profile image
DenB

Hi

I am from Higham, near Rochester, Kent.

DenB

quickjel profile image
quickjel

Tidenham Chase, Gloucestershire, closest town Chepstow (Monmouthshire).

DenB profile image
DenB

Brilliant idea, asking everyone where they live!

X

Maxine12 profile image
Maxine12

Stockton on Tees. Teeside :)

myjual profile image
myjual

I live in Liverpool

Just done the road from you nellienoonoo. I live in Mitcham

cabbagecottage profile image
cabbagecottage

I live Nr Newport . S . Wales , UK

Jughead profile image
Jughead

Central,Louisiana USA

Gadgetgeek profile image
Gadgetgeek

Right on the coast in Hampshire, over looking the Isle of Wight

nellienoonoo profile image
nellienoonooβ€’ in reply toGadgetgeek

I have family on the Isle of Wight

Gadgetgeek profile image
Gadgetgeekβ€’ in reply tonellienoonoo

I lived over there for 10 years

Amilazy profile image
Amilazy

Hi Rhuddlan, near Rhyl On the coast in North Wales.

nanonthenet1 profile image
nanonthenet1β€’ in reply toAmilazy

We moved from nearby Rhuddlan 7 months ago to be near family x

Katiebow profile image
Katiebow

Hi, I live in East Sussex, near to Tunbridge Wells.

NannaB profile image
NannaBβ€’ in reply toKatiebow

Not far from us then, west Kent, NR Tunbridge Wells.

Katiebow profile image
Katiebowβ€’ in reply toNannaB

Yes we are in Crowborough, East Sussex.

NanBabs profile image
NanBabs

We live in north east Wiltshire.

Patriciapmr profile image
Patriciapmr

Hi, we live in Buxton, Derbyshire.

LindanTerry profile image
LindanTerry

Hi, We live in Rugby Warwickshire.

ketchupman profile image
ketchupman

Louisville, Kentucky. Home of the Kentucky Derby, the Louisville Slugger Baseball Bat, and Kentucky Fried Chicken (KFC). :-)

nellienoonoo profile image
nellienoonoo

Wow i cant believe how near and far everyone lives

DenB profile image
DenBβ€’ in reply tonellienoonoo

But you wouldn't know it would you!

york profile image
yorkβ€’ in reply tonellienoonoo

Although so far apart so near on this site.😊

Malm1959 profile image
Malm1959

I live in Philadelphia, but I moved my mom here from Chicago. I lived in London from 1987- 2001 and my mom visited us frequently there. My mom always ordered the cheapest food on the menu. I've often wondered if she got psp from visiting me in the UK and ordering foods like oxtail soup!

Mconnie profile image
Mconnie

Hello... I am from Salem, Massachusetts. USA

horsegirl profile image
horsegirl

Atlanta, Georgia USA

Jbpractice profile image
Jbpractice

Chicago, IL USA

blackhill profile image
blackhill

Small town just north of St. Louis .....

toyota11 profile image
toyota11

Hi all, we are in Driffield, East Yorkshire.

4mydad profile image
4mydad

Ontario, Canada

Folliott profile image
Folliottβ€’ in reply to4mydad

I also am Ontario. Midland.

Pokey profile image
Pokey

New Brunswick, Canada right in the border of the Province of Quebec.

Auddonz profile image
Auddonz

US, Florida. Having email issue so haven't been on for a few days :(

GillJan profile image
GillJan

We are in Somerset, moved just after symptons started for hubby 18 mths ago, getting to know the area, but lovely having Exmoor on the doorstep and closer to Devon and Cornwall for breaks away

We live in Chilliwack British Columbia Canada.

deew profile image
deew

I finally remember my password lol,So now I have two accounts.I will delete the other.

We Live in Chilliwack British Columbia

I live in Kelowna, British Columbia

Heady profile image
Heady

Clevedon, North Somerset. UK

We're in a village putside Fethiye, south west Turkey.

nanonthenet1 profile image
nanonthenet1

outskirts of Stockport, not been on here for a while but nice to be back...x

Amilazy profile image
Amilazyβ€’ in reply tonanonthenet1

Hi nanonthenet1 pity we did not meet up when you were in Rhuddlan, we moved from Rhyl Jan14, and had alterations to bungalow over autumn 14. Read your moving home experiences very similar 4 bed house to 2 bed bungalow, lots of memories had to be ditched. Anyway when you say near Stockport you do'nt mean Marple if so that's my home town. Still sorting out my mum's bungalow there hope to sell in Aug hopefully 3rd time lucky. Best wishes Tim

nanonthenet1 profile image
nanonthenet1β€’ in reply toAmilazy

We are in Offerton so not far from Marple, have settled here now but still love to visit friends in Rhyl 😊

hellebore profile image
hellebore

Wow we are global. I am in North Wales.

Amilazy profile image
Amilazyβ€’ in reply tohellebore

Hi hellebore, as you live in N Wales if you can make it I have set up a PSPA local group meeting in Bodelwyddan on 29 Sept at 1100. You are very welcome to drop in have a coffee and chat. Best wishes Tim

Yvonneandgeorge profile image
Yvonneandgeorge

There are a lot of people from America, and quite a few from Canada xxxxx

Tz2388 profile image
Tz2388

Des Moines, Iowa and Phoenix, Arizona, U.S.A.

nakkdo profile image
nakkdo

Sutton on Sea, Lincolnshire.

Jojo12 profile image
Jojo12

Adelaide, South Australia. I haven't posted on here before. My dad (74) was initially diagnosed with Alzheimer's until they re-diagnosed him with PSP. He has just gone into a care facility after a bad fall that resulted in a 3 week hospital stint with broken ribs & pneumonia. Just a horrible disease!

kryste profile image
kryste

United States Reno. Nevada

blackcushion profile image
blackcushion

Hi im from a small town called builth wells in mid wales x

GAD42 profile image
GAD42

We live in Northern Ont. ( Sudbury )

GAD42

LynnO profile image
LynnO

We live in a small town west of St. Louis, Missouri. (USA)

LynnO

Julieandrog profile image
Julieandrog

droitwich worcestershire

Julieandrog profile image
Julieandrog

droitwich worcestershire

I am west of Glasgow, Scotland.

Cosmos123 profile image
Cosmos123

Leeds, West Yorkshire.

Lieve profile image
Lieve

oops only just saw this - life was busy! Right now with my dad in Leuven, Belgium - where I lived until the age of 28 - then moved to Manchester (UK) - via Stockport, Chorlton-cum-Hardy - Macclesfield (1990-2004) ... then moved to Princeton, NJ (2004-2014) - now back in Leuven until I move back to the States, probably next year.

Julieandrog profile image
Julieandrog

hi droitwich spa worcestershire x

We are from Montreal, Quebec - hoping to hear about this heartwrenching disease

from Canada - my husband is the one with PSP

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