Where I am today.: Living in Sheffield (for... - PSP Association

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Where I am today.

HannahDaykin profile image
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Living in Sheffield (for university), I wish it was easier to cope with my Dad having PSP- it's not! Every time I go home (Nottingham) it hits me in the face 10 times more than the last; Dad falling over, his legs freezing up, choking on food, slurring his words to name but a few!

I dread going home and only do when I have to. It was my 21st birthday in May & it was definitely the hardest birthday so far; Dad didn't even say happy birthday to me. Why didn't he say it? I felt so angry at him! Then I felt so angry at PSP; why has PSP taken my Dad away from me?

Counselling was really tough today, it was my penultimate session with my current counsellor. She has helped me so much and I'm scared I'll have to go back to square one. She's taught me that it's OK to feel angry and selfish sometimes! I almost feel like unless someone has experienced PSP through someone close to you, they haven't got a clue how it is! I feel awful for saying that though.

Would definitely recommend counselling (as scary as it sounds) to everyone and anyone!

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HannahDaykin
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PSPA_HelenP profile image
PSPA_HelenP

It's definately OK to feel angry and selfish sometimes, coping with PSP takes it out of you!

Remember that all of this is just a symptom of PSP and your Dad will still wish you every Happy Birthday even if he cant say it.

I'm glad your counselling helps, try to keep going for it even if you have to get a new counsellor, as it has obviously done you good and you have to stick with what works best.

ray-wiffen-1958 profile image
ray-wiffen-1958

hi hannah,its ok to feel angry with psp but its not your dads fault

that hes got it, i was diagnosed with cbd at the age of 49 in 2008

which was a shock at the time my family took it quite bad at the

time but now we just take each day as it comes, im glad you are

haveing counselling does it help, the thing that has help me come

to terms with the illness is by haveing holistic thearpy i have a thing

called eft (emotional freedom technique) its given me more conferdence

to cope with the disease and its given me my mojo back i seem to have

more get up and now, i hope your dad keeps as well as he can and try

to keep your chin up thats what i tell my kids.

benidorm123 profile image
benidorm123

please find comfort that your not the only one , we live in leicester my mother has been on a terrible journey with the first 3 to 4 years being misdiagnosed with every thing from anxiety to having a stroke , in the last 2 two years it became apparent at first to us that something was really wrong my sister and myself went on our own search to come to the conclusion that it might be parkinsons so we took her for tests , no they said she'd had a small stroke , 12 months later a horrible fall which we had to seek urgent medical attention for at our local A&E where il stated that i was not having my mother discharched with out seeing a nurelogyst because of the complex nature of an illness that after 30 years of working with the elderly l'd never experienced symptoms like it .After telling the A&E DOCTOR the main six areas of concern she actualy listened to what l was saying my mothers diagnosis came two days later. When reading about parkinsons l remembered this little disease that i'd read about and thinking at the time MMMmm it sounds like mum , and saying to my self" no please God dont let it be that " and thinking "No its too rare, it can't be " but Now 12 months after reading that l was now hearing it .

The only reason l have not posted much on these sites or got involved with P.S.P society is TIME , because when you are careing for someone with P.sP , you dont get any ! I would at some piont like to wright a book about our journey of fighting for the right treatment and care and respect that my mother deserves.In the last 12 months my proactive sister and myself have rightly source C.H.C for my mother ,after the first D.S tool going missing at the hospital me being me asked for a copy which we used to start it off then the first meeting went well and it was recomended for c.h.c , then was turned down by the board and both of us appealed which has took till the end of 2014 to gain inbetween we have provided 24 hrs care , having to explain to doctors and nurses about the illness and what it is about we have had 2 community matroms who have done thier best and lots of vists from O.TS who have all the answeres in therory but none in practice ,its took 5 months and all we have recieve is a slide sheet of the 4 things that we enquired about , most advocate that my mother sleeps downstairs and has a chair next to the bed and thats where her world should end , they do not understand the nights where your awake trying to bring comfort with some one who sounds and looks like their choking to death. The only people who seem to have some understanding is the consulants , the two l have seen with my mother have the compassion and have tried to help with giving us the drugs that we have suggested might help from what we have read about psp on web site s . l would like to say that l know how your heart breaks , how when your out and look at other people who are with their parents you envy, and ask " why my parent " how when you think they will always know you when other parents dont know thier children , how lucky you will be , then realise that they will then know whats happening to them , so they really are the unlucky ones .please just keep on and on at the services because l have many stories to tell where my mother has been written off because "there is no ten year benifit" or "No out comes to be gained " With having a mum with P.S.P you are not only having to fight the disease with them you have to fight the system all the while keep battling , never take anything they say with out question and always make sure you dont take thier knowledge as worth more than yours , they often know less than you .l feel great for writing this post because l work full time and care for her after so really do not feel like it but this week has been a good week and lam think it may be down to some steriods , as before when shes been on them there is an improvement so now our quest is to see if a low dose will help and i will let you know about this . far we have had amantidene which we think had a improvement and when she gets an infection a two week course of co-amoxiclav help the best she has a sleeping tablet (2) and thickner we sing a lot to help keep the voice and drink through a straw to help exercise mucsle we are going to try lepodeva in two weeks but have been reluctant to try them because of side effects l could go on andon and feel as though l have only touched the surface so l will save it for another day but please l saw nottingham in your post , and because your near l felt the need to post .hope you are well and feeling better and at 21 you are too young to carry all this on your own so get intouch if you like repost here xxxx my thoughts are with you

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