I think my Mom has PSP

My Mom as AF and started falling backward in 2010 and was taken into hospital begining of January that year with a bad chest infection, but her falling backwards continued she also went into heart failure in the september but still continued to fall backward. she did have to have her lungs drained and the her last fall resulted in her fracturing her hip. Was not diognised untill the begining of 2011. they could not operate due to the condition her heart is in. That year year in May she moved in and came to live with us. As I was living at Moms and my husband sleeping on the floor at the weekend thankfully my family were old enough to look after themselves. She is no experiencing difficlty with swallowing and keeps forgetting things and keeps getting angry and snnoyed the GP really does not want to now. What help and support is out there.

Hope some one can help.

15 Replies

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  • HAV EYOU SEEN A NEURO WHO SPECIALISED IN MOV T DISORDERS?

    THEY ARE THE BES TTO GIV EYOU A DXS YES OR NO

    AND THEN JOIN HTE PSP ASSOC.

    lol JIll

    :-)

  • Hi rainbow,

    As Jill said the best thing to do is to ask for a referral to a neurologist. It may take a while before you get a diagnosis though as they have to eliminate a few other things first. Having said that if your mum has trouble tracking something up and down with her eyes that may help them come to a conclusion more quickly as vertical gaze palsy is a feature of PSP.

    The PSP Association website has lots of useful information and this website is also very helpful.

    Good luck!

    H

  • i agree, go to a neurologist and make test like Dat Scan

  • IT SOUNDS VERY MUCH LIKE psp - WHY HAVE YOU NOT BEEN REFERRED/TRANSFERRED TO A NEURO - WHERE DO YOU LIVE ?

  • We are at the moment going round and round in circles!!! we live in worcestershire.

  • there is a very good neuro doctor in hereford hospital.dr davies.

    when we were going from piller to post with my wife.

    he got us on the right track

  • MY FAVORITE COUSIN LIVES N LEIGH

  • We had the same trouble and I went with mum to the GP and asked to be referred to a neurologist. With his first examination the Neurologist said he suspected PSP and sent mum for MRI and DaTscans which gave him a better idea. It may help you to print out a list of phases of PSP and highlight things you are already noticing as this can make them listen to you. Good luck x

  • Hi, There is lots of support out there. There are PSP groups in the USA, UK, and some in Austrailia. In addition there is a web group that is very informative. Also you can set up a google search and you will get important information on PSP whenever it is posted on the web. Email me if you want the information. jim.pierce@gmail.com

  • Hi Rainbow.

    The falling backwards does sound like your mum has PSP. My mum was referred to a neurologist in 2005 and was initially wrongly diagnosed with Parkinson's Disease as she has a tremor which was a red herring because it turned out to be an hereditary Benign Essential Tremor! The diagnosis was reviewed and altered to PSP in 2007. I have nursed her full-time since 2009. I struggled at first as I didn't know what to expect or who to contact.

    Once your mum has a firm diagnosis you need to contact Social Services/Occupational Health who will assess her and get aids for her like a zimmer frame/trolley, raisers for chairs and bed and will get carers in to help you and take some of the pressure off. If your dad was in the forces you can apply to RAFA, SAAFA, British Legion for help with things that SS won't provide. We got a wheelchair, Riser Recline chair and a blow up chair for when mum fell in order for me to get her up.If she or your dad was in a union at work they generally have a charitable arm who will also help you! If you are caring for her yourself you need to apply for Carer's Allowance and Income Support who also pay your mortgage interest if appropriate. You can apply for a Carer's grant bi-annually and for a domestic grant for your mum for white goods etc., You are going to need all the help and support you need now and even more so in the future. Join the Carer's Association, a friend of mine who lives in Malvern has joined the Worcestershire branch. Also join the PSP association, they are both a mine of information! I get respite care every 6 weeks at a local hospital and get 1 1/2 hours per week sitting-in service through Crossroads who are funded by a charity. I didn't know any of this at first. I do hope this is useful to you.

    This is the hardest, most physically, emotionally and mentally challenging thing I've ever done. It can be sad, funny, heartbreaking, frustrating but rewarding and I wouldn't change a thing.

    Good luck and take care

    Lizzie x

  • Thanks Lizzie who was the neurologist your Mom saw and thanks for your information very helpfull.

    rainbow

  • Hi Rainbow, glad the info was helpful. Mum saw Dr Pall, a Professor of Neurology, at the Neurosciences dept of the Queen Elizabeth Hospital, Harborne, Birmingham. Even though he missed the diagnosis of PSP initially, he was very good, kind and caring. Mum used to see him or one of his colleagues every 4 - 6 months. She hasn't been for an appointment since July 2011 as she has never been sent for for some unknown reason! They may have misplaced her notes/records during the move from the old to the new hospital or I guess it's because they can do no more for her and to be honest it was such a stressful time for both of us getting her ready and dressed really early in the morning ready for the hospital transport to pick her up at 9am and then her not getting home til 3pm. It was an extremely tiring day for her for just 10 minutes with the doctor. Any problems she has now are dealt with by the GP or district nurse and me!

    Take care

    Lizzie x

  • From what I gather there are accounts of Psp typical symptoms but you should consult a specialist. Greetings.

  • My Dad was diagnosed with Parkinsons and Dementia 3 years ago, but his consultant in Reading, UK says he probably has PSP because the falling and other symptoms we described are consistent. He had an MRI scan 3 weeks ago. I read up on PSPA website about PSP and to be honest we can pretty much tell from the symptoms listed that this is what he has - so much of it makes sense. He is 72. He falls a lot (backwards mostly) which is a struggle to manage but he often says he's not hurt and short of padding everywhere we don't want to remove his independence to get around but need to balance with his safety (though finally he's using a walking frame since last week), his eyes close involuntarily, his speech is very slurred and he knows what he wants to say but just finds it hard to get the words out and I can only imagine how frustrating it is. It's my first time on this site as I am currently looking after him and my Mum for the last 5 weeks (who's is normally Dad's carer but has become immobile and in urgent need of a hip replacement and in agony!). It makes me realise what my Mum has been coping with and the constant calls to get things done are very time-consuming, so hopefully I can be of more practical help to both of them and get tips from all you first hand experts. We have been lucky with help from Social Services, the Consultant questionning his own diagnosis at the hospital and I'm now looking into respite centres to give him and Mum a break (when she's back on her feet). I know that as sufferers and carers you all need a huge does of energy, courage and love. I know also that only those in the same boat really understand so, if I find the time (also with a full time job and 2 young kids..) I'm hoping to make some friends who really know how it is. Stay strong all!

  • If you do want to contact me I am on Face book Karen Baughan

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