Hi My husband diagnosed with psp recently. He is going to Walton centre next week. We haven't had much info so far,( told to check Internet)

[knitter13]

Does anyone else suffer pins and needles in hands and arms? Also loud,sharp sounds "hurt" his head

[dorothy-thompson]

Hi Knitter

Where do you live? Because in the US there is a very informative site Curepsp and in the UK another one called PSP association.

But this blog has a mine of information as we are all carers or sufferers of PSP and know what really is happening.

my husband has had PSP for 8 years.

Kind regards

Dorothy T

[knitter13]

We are in u.k. I have been contacted by psp association but have had a good deal of info from this site.just wondered about his symptoms. No one else mentioned pins and needles and sensitivity to sudden noise.

[LynnO in reply to knitter13]

My husband startles VERY easy. Any sudden noise (especially loud) will cause him to almost jump clean out of his skin! He's never described it as "hurting" his head though.

Lynn

[Heady]

Hi knitter, sorry can't help with the symptoms you talk about. Perhaps someone else will.

I too was told to look up PSP on google. What ever happened to doctors who were confident or cared enough to actually talked to their patients. This site is a mind full of information. Every thing I know comes from the people here, who are going through this dreadful disease, either as a carer, like me, or a sufferer. So stick around, we will help you as much as we can. Check the old blogs and ask as many questions as you want! I promise you will get the truth, the whole truth and nothing but the truth, warts and all!!! We all let off steam regularly, so some blogs may shock you at first, but that will last about 2 seconds, when you realise, you feel exactly the same and realise that it is fine to feel the way you do!

First thing you have to get your head around is, nobody as ever heard of PSP, including and especially the medical profession! So go to the PSPA, they provide leaflets, to explain everything to you and they also provide them for the professionals. These are worth their weight in gold, when going to the dentist, optician, hospital, etc.,etc.

Most of all, please realise you are NOT alone, we are all here, ready to listen to your screams, tears, frustrations, share your happier moments, anything that you want. Nobody knows anyone, so you can say exactly what you want and feel.

Remember, we all got the same ".....," tee-shirt!!!!

Lots of love

Heady

[jillannf6]

hii i too go to the walton cen tre and wa s told to go not en internet and google PROGRESSIVE SUpraNUCLEAe -RPALSYH - WHICHi did

where did he get his dxs / i paid for mine i.e. wen tot see a neurologist locally who operates out of the walton centre and is a movement dis or ders specialist - the type you nee dot sees with your husband]

his name is dr M S`.....ER 9 I do not think were allowed to give full names out here

spporry but message me if i cn` help y9u any more

lol Jil;

and a

[jillannf6 in reply to jillannf6]

hi knitter

sorry for the typos above

i mean tot say that i do get pins an d needles in my arms and hand sand do some tai chi exercises to get rid of them- usually when i ha ve been sleep gin on that side - to avoid snoring another problem with this PSP

LOL JILL

[SharonAB]

Dear knitter14,

From the day my husband has been diagnosed with PSP he has had a neurological team to support his condition - consisting of a neurologist, social worker, 2 x speech therapists, clinical nurse, psychiatrist, occupational therapist, 2 x physiotherapists and more - All Sounds ideal - better than what most will or can ever expect - you get the picture -

In reality - when I asked each of them individually, what they could tell me about PSP - I was told to check the Internet with no inkling given on where to start. I asked for web-sites and hit a brick wall, and felt abandoned.

I write this to you to let you know - if this site had been around at the time - I would have passed the details on to each member of my husbands medical team - for I believe it along with a couple of others - would have been undoubtedly been of great use to help each of them better understand,and come up with real practical solutions and support to aid my husband, me and our daughter.

Regards,

Alana - Western Australia

NB To begin my understanding CUREPSP sent me out a comprehensive package in the mail from USA to Australia for which I am eternally grateful (Details were not on-line at the time)

[Hidden]

knitter 14

I have tendonitis and therefore pins and needles in my left arm also find it hard to lift things( but cannot help with anything else.

[quickgel]

Hello knitter,

I can't offer any suggestion for overcoming pins and needles but you could try industrial type earplugs that enable the wearer to hear speech but limit the level of intense noise.

With regard to info. one significant feature of PSP is that there is no clearly defined path along which the progressive aspect of the disease moves. In addition, the stage at which diagnosis is made can vary enormously, so there are a tremendous range of starting points, making it a unique experience for each individual. This necessarily results in the amount of information provided, to cover all possible eventualities, being both overwhelming in volume and much of it not applicable to your specific needs of the moment.

To complicate things further, where you live, the nature of your dwelling, your age and state of health and a host of other factors, particular to your situation, will impact on your priorities for the future. One thing for sure is you will need help at some stage and it is as well to have it in place ready for when it is needed rather than try to access it at short notice (CHC is a case in point). Help with mobility, bathing and toileting, advice on nutrition and feeding, general care to enable the carer some respite are all issues likely to require consideration.

In brief, start to assemble a team of professional contacts to give you the support you will undoubtedly need.

I'm a former carer and therefore have limited experience but if I learnt anything it was to accept help from any 'informed' quarter and get prepared well ahead of time e.g. we coped for a long time with a seat in the shower, followed by a raise and lower seat in the bath but ultimately had a wet room. Installing the wet room earlier would have made much more sense, it's not as if there was a chance that mobility was going to improve.

There are those on this site with current experience who will doubtless give you all the help and information you need,

Best wishes and kind regards, Jerry.

[knitter13]

Thank you to everyone for your replies. What a wonderful, friendly site. This is all very scary. My husband is obviously at an early stage but I can see there is help and love out there! Thanks again.

Sandra

[quickgel]

Hi, I've just googled the Walton Centre and found it is in Liverpool. I don't know how far that is from you but the PSPAssoc. have a Local Support Group that meet monthly in Liverpool that may be able to give you help and support. The contact is Roger Grand 01704 574046. There are support groups in several locations around the U.K. so there may be one that is closer to you should you be interested. The PSPA Helpline will be able to give you the contact details, their tel. number is 0300 0110 122 or Email: [e-mail]. You may already have all this information but if you haven't I thought it might help. Regards, Jerry

[knitter13]

Thank you. We are living in Carlisle but coincidentally he worked as an apprentice on Fazakerley hospital many years ago. We are both from Liverpool. Thank you for all your info, it is very kind of you.

Regards sandra