hi anyone living in the Bolton/ Greater Manchester area with PSP?

[kades]

Hi dad had been diagnosed 6 months ago would love to hear from people in our local area with the illness either patients, carers or family so dad can perhaps join groups etc. i am a member of the psp web but the meetings they hold in manchester dont land on my day off.

so i am just seeing what else there is local for dad to gain support

thankx xx

[emazros]

hi,

we live in st annes near blackpool we dont have anything here, we dont drive so cannot get to group meetings, would be nice to talk though xx

[kades in reply to emazros]

hi emazros loverly to hear from you my dad situation is is new to psp diagnosed 6 months ago think he may have had it about three years prior. his symptoms at present are:

slow walking

limited eye movement up/down

mood swings/swearing (totally out of character)

writng small cramped

sleep patern a little disturbed

choking occasionally when eating usually craming too much in mouth

not fell since been on tabs for parkinsons (out bed occasionally fell now got rail)

breathless

got fluid on lungs (gp said heart realted not aspirational pneumonia)

eye closes occasionally slow to come bk (gp said lif get bad could have botox nhs)

currently goes parkinsons society members gym twicw per week in bolton free

physio

speach therapy

has great OT

got all walking aids for if he needs them

ok bathing

dressing

feeding

he has gone from active living alone to dependent on family very frustrated, he is 71 i family caring for him keeping him busy active. i think it would do him good to go to meetings only i cant make the day there on. so i thought i go on here see what alternatives there are

please let me know your story

thanx xx

[kpsmail]

i am being diagnosed as PSP last JUNE. Ifall frequently, my eyes closes when I see below , my neck pains and Ihsve problem sitting and getting up. I never go alone.Now I go for acupressure and some inverted asans ..It has great improvement

[jillannf6]

hi kades

i was diagnosed wiht PSP in dec 2010

and am sill here blogging and gettgin out whilt i cna

to parkinsonsn meeting locally

eto TAI CHI goood for balance

and a singinggorup which slow s em down and i do keep in time if not in tune 2 the music i hope

i fall a lot (aggravate dby stress) down to 4/5 daily much better than 28 when mosn tstressed

have just mvoed into a groudn floor aparatment with my partner

and have just got the LPA in place

but .

my eyes are clsogin more (not blinking and ge tv dry) and i cant wear my contacts any more

am getting bowel and urine problems so am seeieng an incontinence nurse

prob, i hope, have the sllow type fo PSP (i read on this forum from someone in the USA tha there is a slow version)

But i am good as i am sitll here and sitll smilng

i live in ST HELENS and usually og to the liverpool meetings

for PSP

Lol jIll

[kades in reply to jillannf6]

hi jill sorry not got back sooner ive been away, my dad has been told he has the slow version too by the psp specialist at hope hospital. dad is part of the parkinsons group he does the gym and circuit training twice a week with this group. ask your gp about botox to keep your eyes open our gp told dad he can have it when the time comes that he needs it. dad is concerned about getting incontinent it is his biggest worry from a dignity point of view is their anything they can do to stop this happening ?

[emazros]

hi,

my stepdad has had psp for 8yrs now, lost speach approx 3yrs ago he has just started with wheelchair now, he is struggling with eating badly now choking, my mum care's for him 24hrs i moved across the road 6months ago so im only a step away to support her, there are no meetings near us in blackpool so it is hard as my mum feels so alone the doc and matron are ok but there not clued up on the reality of this disease x

emma xx

[kades]

salford royal/hope hospital has a psp specialist ask to be transfered to her she is fantastic its only about an hour away and there is the parkinsons societythere in st helens bolton so see if they are near you they put on excercise classess holidays meetings etc. i wanted to go to the meetings but i was a bit worried about bringing dad and him hearing all the gory details and upsetting him x