My Mum has just been diagnosed with PSP - PSP Association

PSP Association

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My Mum has just been diagnosed with PSP

gazza63 profile image
21 Replies

Hi everyone,

I've just been reading your answers and questions on this shocking disease. It is rather heart renching to read and to see your loved ones going through this.

Mum I think has been suffering now with this disease for quite some time however has gone either misdiagnosed or not regonised.

Mum is now at the stage were she can't walk

Can't get herself back up into an upright position if she slides forward in her wheel chair

Her nose involuntarily screws up.

She has trouble swallowing however is still feeding herself at this point in time

Suffers server bouts of uncontrollable crying.

Can't roll over onto her side in bed

Has incontinance with bladder however not bowel at this stage.

Is slow with her movements and struggles to do things - such as a simple task of taking plaster of a patch.

Has trouble with vision and appears to have what I call dead eye's and no expression on her face.

Has total personality changes from the aggression to the crying and frustration

Is very forgetfull. But to still tell me when things are not right.

Mum is in a home and quite frankly I don't think they are well enough trained to deal with the issue's. Is there any support services that can go to the home to discuss these issue's with the staff and I know that each individual is different but I believe mum has been suffering from the disease for around 4 years now started with the dizziness, then the continual falls, more often than not backwards and now to the stages I have discribe above.

Should I discuss with her the End of life form before she gets too far into the disease on her wishes.

Your input would be greatly appreciated on any advise you can give me.

Regards

Gail

21 Replies
jac001 profile image
jac001

Hi Gail

Hard and all as it seems I think it is very important to discuss end of life choices with her. Mum has PSP and we are sitting with her at the moment. We discussed PEG feeding and other things though mum wasn't diagnosed until she was nearly at the end of the second stage. Keep talking to her and encourage people to visit. I wish I could say it was an easy journey but I cant it is a very cruel disease.

peterjones profile image
peterjones

h gail sorry to hear that your mum has psp i would definately talk it over with your mother mate

it is a long and arduos road for your mother and the carer and believe me you need the patience of a saint sorry cannot give you any good points about i\\\\t good luck and best wishes to you and your mum peter jones queensland australia psp sufferer

gazza63 profile image
gazza63 in reply to peterjones

Hi Peter thank your for your kind words, and every body else for your kind thoughts, yes its is very heart renching to say the least but at least now it explains a lot of things that we did not understand before. I live in Perth WA....Also Peter what is Peg feeding I do not wish to prolong her suffering as she is suffering enough as it is I hope she goes quickly as from what I have read today on the end stages it a horrific disease and I sympothise with every sufferer on here my heart goes out to you all...best wishe's and I hope I can get strenght to deal with this to help my mum in the long journey...Thank you very very much....much love to you all x Gail

jillannf6 profile image
jillannf6

hi gail

welcome to the site

i ha ve psp and was dxd 2 years ago

like ur mum i cannnot do a lot fo things anymore but think i hav e the slow sor tfo psp as i amstill upright apart from when i fall (now down to 5/6 times daily)

wher e do you liv e - in the uk?

i think yhou should discuss end of life choices while she can stilllcommunicate -u dp noe mention if her speech is affected,....

i have an lpa drawn up wiht an a4 shee t of my wishes like no PEG feeding when the itme comes and i cannot speak or communocate in any way

lol jIll

:-) try and keep smilign for yhour mum.s,s sake

gazza63 profile image
gazza63 in reply to jillannf6

Hi Jill

No I was born in the Uk near manchester :-) but live in Australia since I was 5. No mum's speach is not affected at this stage, just the lack of being able to walk, the stiffness in her joints and the fact that if she slides forward on her wheelchair has not got the strenght to straighten herself up. Even needs assistance with this. Yes I tell her to ring me anytime of night to inform me of her day what time they administer her, her night time nerve pain medication as this is very important in keeping her comfortable. The other night it was an 1 1/2 hours past her due time as far as im concerned not good enough. So I have the big high racky of the home ringing me tomorrow as I put in a formal complaint in as there are quite a few issue's i'm not happy with. So I will see how it goes.

Lots of love and thank you Jill x

Saran profile image
Saran

Hi Gail hope your coping okay. My dad too had this cruel disease but like previous conversation take steps now and talk to your mum about peg etc carer

When my dad was diagnosed back 5 years ago I didn't believed the condition. Starting to read on Internet about the steps that happens like falling cant talk walk write hold things can't go toilet by themselves etc my dad was too late for peg because he had pueominua.

My mum was my dad carer and but we had a carer for the morning and evening to put dad to bed and get dressed. It was very hard to see them go through this pain. I wish there was more awareness on tv about this disease so people don't get misdiagnosed . Take care all you can do is give your mum lots if love and make them feel they are not alone. How you feel is very normal sometimes we think why us but gods in control he know best. Take care

X s

gazza63 profile image
gazza63 in reply to Saran

Thank you sweet heart, yes unfortunately I'm unable to care for mum as I myself am not well, I have a lung disease and it robs me of my weight so even with carers I would be unable to look after her...yes I speak with her nightly as she can ring me at any time of the night if she has concerns or things are not given to her on time like her nerve pain medication rather than wait till I get in to see her as her memory is not good like I told her rather know then and there so I can log the times etc...Thank you sweet and my heart goes out to all sufferers and their families is a horrid disease. xxxx Take care from Australia x

Saran profile image
Saran

My dad was Asian Indian incase there are people who want to share or need help in punjabi x

concernedfamily profile image
concernedfamily

Hi Gail,

I know how you are feeling as my mum was diagnosed with PSP in October 2012! A very difficult time as I am struggling to find out what stage my mum is at!! No one seems to want to commit to giving me much information at all. One piece of advice I was given was to discuss this with a doctor and my mum so that her wishes could be upheld about medical intervention such as peg feed etc. I know that my mum would not want all these things as she has been treated for Parkinson's disease for many years now is prone to falling has broken her back and wrist and she herself feels that this is another step in the wrong direction! The PSP nurse for your area will advise you I found ours to be a great source of information and very supportive so join the PSP Association and they will contact you and can advise on anything that is worrying you. Good Luck to you and your mum xx

gazza63 profile image
gazza63 in reply to concernedfamily

Thank you sweet will do that, as I have contacted the parkinson disease centre as that was what I was initially told she has however have since found out it this psp. It explains a lot especially her rapid decrease in movement since reading today regarding the final stages.. I just hope she does not suffer for too long...Good luck to you too sweet, my thoughts are with you, your family and your mum xxxx

gazza63 profile image
gazza63

thank you everyone for your kind thoughts and input. Much appreciated I will take on board your advise and follow through. Again thank you very much and love to you all in this long journey that we as family and to the sufferers of this horrid disease xxxxx

ddspan profile image
ddspan

Hi Gail,

Almost everything has been said already but by these responses I hope you feel less alone. My Dad is in the final stages the only thing they are doing is keeping him comfortable with meds and right now he says he's not in pain. His aspiration pneumonia did not respond to 3 rounds of antibiotics and then IV antibiotics it has only gotten worse. Thankfully before he got to this point he let us know he did not want a PEG and he signed a DNR. As hard as it will be we (his family) will respect his wishes. He cannot walk, talk, barely eats but must be spoon fed even coffee and cannot see.

This is a horrible disease and I only pray that one day no other family/sufferer will ever have to go through this again. We must try to raise money and awareness to help find a cure or medications for this disease.

To Jillian and Peter and any other sufferers on this board Big hugs you are courageous and admirable people in the way you are dealing wit your disease.

To family members such as you Gail remember you are not alone. This board has helped me more than anyone can know. So to all of you Big Hugs!! and Thanks

DeeDee

vero11 profile image
vero11

hello all angels in earth above..... i was reading every single word said in this blog... i just was told my mommy has this terrible disease last week. :"(. first she was diagnoaed with cerebella strok but things continue worsy , as soon doctor told me this is a progressive and rare disease that was all i was told aboutPSP.i started searching and more i learn about it the most and now it the most scare i am. my mum looks like she is in the 4th stage i guess whit the info i have acumulated from internet... now i join some pages like curepsp.org. and start talking with families thru this media. my mommy brain is clean she rememmber everything but she is not able to walk, talk, do things by herself... now she is totally dependent... ironic!!! she was a nurse al her life, helping many people and now she is trapped in her own body... she is very strong even she is suffering... i am the only child.... im really scare about the road to come. but i really treasure each moment with her... until when. idont know, no body knows only the one who hold all us now. i will be so much involved helping organizations to speak loud about this so goverment can be more interested and involved helping financially and i will pray everyday for a eventually cure to be discovered for this people fighting and all families watching their loves with this much suffering. love u all .

peterjones profile image
peterjones

hi gail regarding the peg feeding i would \go to someone who is qualified get in touch with psp they will give you a correct and better understanding of peg feeding basicly you are fed through a tube but i wont go into that now some people want it and some do not thats why you should talk to your mother now while she can communicate with you as to what she wants i know that this is not always easy but im sure it will be better in the long run and you will have done your bit\\\ best wishes to you and mum peter jones queensland australia

gazza63 profile image
gazza63

Thanks Peter for that input I would suspect mum would not want to go this way, she has suffered long enough, with a serious car accident 15 years ago that they did not say she would survive, which she did after 3 months in hospital, and to be honest a lot of these symptoms I think have been blamed on the damage that was done to her in the car accident hence why we have had no proper diagnosis. Hence when she started getting the stiffness/freezing, dizziness, falling and breaking bones etc was but down to the front lobial grey matter damage she sustained in the accident. Hence why when she was put back into hospital with severe spasms then another stiffening when they were trying to shower her I put my foot down and advised the hospital that she was not to go back to the home until we had an answer one way or the other, as they were going to send her back out after a couple of days and treat her as an impatient. Thats when I said no you keep her there and run the appropriate tests required. Hence now we have the answers in one way it is a relieve that we now know what she is dealing with, but very heart renching to know what she is going to have to endure hopefully she won't have the slow, slow progressive strain and she can go with at least some dignity not that she has much left now..god bless xx Gail

gazza63 profile image
gazza63

Thanks Dee Dee, all your imput is great, I am one of three children but as per usual it always seems to fall onto the girl, mum seems to trust me the most but we were very close in her younger years...She hasn't lost her speech yet or being able to tell me what goes on at the home but we have a plan in action that if there is an issue and i'm not there rather than wait till i go there she now rings me so I can document it. So at least I still have that in my favor at this point in time I spoke with her on the phone last night and told her that I needed to talk to her over the weekend..The question I have for everyone do I tell her what is down the line for her and how bad it is going to get???? How do you tell someone that as she is not aware at this point in time what is down the road to come :-( ....Thank you everyone xxxx

bobt profile image
bobt

Hi Gail

So sorry to hear about your mum. It all sound very familiar, my mum was not diagnosed until it was too late, about 6 months before she passed away.

I think it is very important to get her wishes regarding peg feeding, end of life choices NOW while she can still communicate ..... my mum was in hospital 5 weeks before she died, we will never know what her wishes would have been regarding feeding etc, in the end it was too late to peg feed her, she was too week, we had to take the decision to withdrawn andy medication, (anti-boitics). she had UTIs one after another in her last weeks.

I'M SORRY TO BE so blunt but really think you need to discuss these things with you mum.

My mum died on 22 February 2012.

I wish you all the best, and try to be strong for your mum, I cannot tell you lies, it will be bloody hard to get through, but you will I'm sure, in the end my mum died peacefully in her sleep. .....

Bob

x

gazza63 profile image
gazza63 in reply to bobt

HI bob,

Do not apologize for being blunt, that is how I work as well, yes not going to be easy by all means but i will take all her wishe's into account on this issue I just don't want her being kept alive suffering and i'm sure she would not want this also. However will be discussing certain issue's with her on the weekend. When I go and see her.. thank you all for your help it makes it a lot easier to know we are not alone ....Have a great weekend everyone and again thank you for your imput...Love Gail x

jillannf6 profile image
jillannf6

hi gail

again

i think you need to get hyoru mums wishes formalised - i have done htsi and have a LASTING POWE ROF ATTORNEY AND ot go wiht that an A4 SHEET with myh wishes on

in fact i hav ejus tbeen diagnosed iwth breast cancer (caught soon and the non invasive type) and will be havign a lumpectomyh first week in decemnber

i hav ealway sbeen upfront about my PSP and know roughlyh wha twill happen altho it si difficult ot believe tha t i will los eall ability ot commuinciate or do anythingfor myself

i htink i hav eht eslow sort s(liek pet erjones in australia ) and am still in stage II

hte psp website will guid eyou on thsi

lol jill

:-)

dllera profile image
dllera

Hi Gail. Welcome to the site but I am very sorry for why you need to be here. My father suffered with PSP for 10 yrs. All I can offer is my experience. I don't want to scare you but we had a terrible experience with our care home - in fact I am currently in legitation - I am in the States so I'm not sure what the regulations are where you live but you should understand what they are and also determine what the expectations are in the level of care. In our experience -our expectations are way off from what my father received. Some things to consider - I do think it is important to talk about end of life and DNR measures with your mom while she can communicate. It is also very important to establish Power of Attorney. I followed my dad's wishes to a tee and I have not one regret. You have a life to live after PSP so you don't want to spend it feeling guilty and wondering if you did the right things. I have attached information about PSP and demand that the care home and anyone in contact with your mom reads it. PSP can be very frustrating for carers (and of course patient too) if they don't understand some of the symptoms. Most PSP sufferers end up needing 1-1 24/7 care - what will the home do to ensure her needs are met? Keep a watchful eye on medication administration -read the logs and ask questions. You mom needs to be rotated several times a night and needs to be kept very clean if she is unable to use the bathroom. We ended up brining my dad home to live with me and I hired a staff of caregivers - -I was fortunate to have the means but this does not mean that PSP sufferers in care home shouldn't get excellent care. There are several folks on this site that have had amazing experiences - I would post another question on how they found a good care home and see if anyone can help you with how to evaluate.

Here are the links I spoke about

pspinformation.com/disease/...

pspinformation.com/disease/...

Best of luck to you -

Danielle

Walking18 profile image
Walking18

Hi

I read the whole of your message thinking my sister must have written it as it is a like for like account of my mums story😳it was only when I got to the bottom and saw your name I realised it wasn’t.

My mum had to go into full time care June 21 after a fall which ended up with her hospitalised and in kidney failure ( she had been laid on her bedroom floor for 10 hours as her lifeline she had took off before bed so was out of reach) it was a very hard decision however it was basically took out of our hands as the doctor said there was no way we could carry on as we were at home.

My dad passed in April 20 and so mum was in a ground floor flat on her own but with carers going in 4 times a day as her mobility had declined. I had asked her GP on numerous occasions for her to be assessed as something wasn’t right ( her gaze was fixed, her gait had changed, and she was choking a lot as well as increase in backwards falls ) after repeated requests he sent a junior colleague out to take her blood pressure and some bloods - of which I never heard back about and when I rang I was told by receptionist I wud hear back if they were abnormal)

She started sending carers away after they had done very little but then ringing myself and sister all hours of the day and night crying and saying she had either fallen or had an accident. We were at the end of our tether no one seemed to care, no one wanted to help!

It was only when she was admitted in kidney failure that a lovely registrar sat me down and asked if I had noticed anything change in mum - finally someone was listening and pretty soon after we were given the diagnosis. Shocking as it was we now knew what we were dealing with.

Once we had the diagnosis I contacted PSPA who have been a godsend - they sent me a whole load of literature for care staff and GP although I have no doubt none of them have been read!!

Every carer in the home that I have asked either says mum has Parkinson’s or they are unsure what she has which infuriates me! The home came highly recommended by friends who work in social care it is small and homely and most of the time ok but it’s annoying that despite an information file being left in her room no one is aware of how she is affected by this awful disease.

Her speech has become really slurred and almost impossible to understand she has been given a chart used by stroke sufferers with a large alphabet on so points to letters to spell words.

We have input from speech therapist who visits about every 3-6 months to assess swallowing etc, there’s a movement disorder nurse who turns up once maybe twice a year and other than that we are left to it.

Since her fall she has complained about pain in her left leg that she was laid of for 10 hours and this is becoming increasingly bothersome to the point now she’s crying and distressed most days I’m in. I have repeatedly asked her GP ( I now have 4 unanswered emails to him and every time I try ringing the surgery I’m in a queue of 30 people😡) I have rang the local hospice to ask if they can get involved in her pain management and was told they can but need a GP referral! I was assured by the home that her case was presented at MDT mid Aug and a referral had gone in.

After still not hearing anything I emailed the manager of the home last week about it ( so I have a paper trail) and was told she would chase it up. When I was in yesterday visiting mum I felt like the manager was avoiding me so managed to catch her as I left to ask if she had chased it up …. Apparently it’s been lost and the hospice never received a referral😡😡 so angry we are back in a situation where it feels she was given a diagnosis and is sat on a shelf awaiting her fate. The care system is a shambles I dread to think what happens to people who don’t have any relatives to keep an eye on things!

Out of desperation I left a message on a Facebook post for the hospice and someone messaged me last night ( I had sent a heartfelt email to them a few weeks ago out of desperation but he no reply ) apparently my email must have been filtered out as spam so they are looking into it this morning and promise to follow it up. I do hope someone can offer some help as it’s so distressing going in to visit and having mum screaming and wailing begging me to take her to hospital and get her leg removed as she can’t stand the pain any longer.

Sorry about the long message but just wanted you to know you aren’t alone it’s a hard road but this group has been invaluable on my darkest days x

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