Support Group for the Leeds/Bradford area

[PAT0]

My friend, Pamela and I would like to invite, patients and carers to a coffee morning to discuss the possibility of starting a support group in the area. We have both been carers in the past and feel we have a lot to offer. We would welcome input from other support groups. Pamela and I have both attended other support groups and found them very informative also a chance to talk with others in the same position and always came away feeling uplifted, unfortunately we had to travel some distance hence our reason for starting a group locally. We have sent out letters but fear we may have missed someone therefore please let me know via the blog if you have not received a letter but would be interested in joining us

[peterjones]

good on yer girls im sure you will get a lot of advice i never realised that there was so many people with psp and there is a real a need for support groups all over the world so good luck with it and god bless you psp sufferer peter jones queensland australia

[PAT0]

Thank you Peter, my husband suffered with PSP , I hope you receive all the support you deserve

[Saran]

My dad had suffered with Psp but now he has died but there should be a new ideas of helping others this is a great idea. Because at the end we had to have private carer and my mum was my dads main carer aswell. I think this is a great idea at least people who have already seen loves one suffer and they can share ideas of what they think should have been done to help them.

All the best

Xs

[peterjones]

thanks for your reply pato i have some great support i have a speech pathologist who has the patience of a saint and a great physiotherapist so what more could you ask for i have a very young dr and a funny nuerologist i am still walking around but have had a few falls which ive left more of my skin around the place than i would have liked but touch wood ive got up again and carry on until the next one which i hope does not come\\\ on the whole things are not to bad i do miss having a conversation with someone \\ without them saying a what did you say

because my voice is weak i can eat most things but MOST TIMES I suffer because of it [because of swallowing] but its still great to be above ground looking down at the flowers \\ than the other option so life goes on \\and enjoy what you can of it BUT the drug that will l coming up shortly maybe the answer to our prayers so to all psp sufferers HANG IN THERE PETER JONES QUEENSLAND AUSTRALIA THANKS FOR YOUR TIME i hope everything goes well for you

[jillannf6]

hi all

rhe drug davunetide willl eb grea tif it si given the go ahead

however i tsi in a nasal spryha form ( i gathe rso tha tit gets ot eh right place in the brain?)

and i cnanto us ea nasal spray a si have allergies and have been usign 1 for the last 20 years

keeep on wiht hte onlien stuff tho - it is great!!

lol Jill

[Donna41]

Hi All.I am happy to contribute to the Leeds/ Bradford group as both a nurse and a carer who has experienced first hand a loved one that developed PSP.

Regards Donna

[PAT0 in reply to Donna41]

many thanks Donna for your kind offer, hopefully we should get started early next year and I will keep you updated

Regards Pat & Pam