PSP help

[Rudywarrior]

my brother has recently been diagnosed with PSP after being wrongly diagnosed with Parkinson’s for three years. Can anyone help with what to expect. I know everyone is different but i hate googling and would like some first hand experience on what to expect- many thanks

[David750]

Hi Rudywarrior, if you have not already done so please register with the PSP Association (pspassociation.org.uk) by phoning their Helpline so you can talk to someone who can answer your questions. I found it greatly beneficial to contact the Helpline when I looked after my wife with PSP. All my very best wishes.

[Kelmisty]

Hi

This illness can act slightly different in each individual depending on how it effects them but the main elements appear to be similar/ the same.

My Mum is 71, she has PSP and CBD (sister illness), estimated 7 years in. She moved into a carehome end of August, as still speak on a good moment but sometimes words are confused, can still swallow on a good day, but coughs and splutters more, can’t walk at all, can sometimes stand and assist with transfer on a good day, one hand works ok but she has dystonia down the whole left hand side of her body which is painful. This weekend she has developed a UTI but appears that incontinence has increased dramatically so has wet the bed overnight whilst asleep.

It is heartbreaking looking after her for three years and having to get her into a care home as I couldn’t do it anymore - but it is the right thing for her as it’s embarrassing and upsetting for her.

Some people get dementia type elements too my Mum hasn’t and she aware of everything - this upsets me the most.

Contact the PSPA they are great, local hospice, neurological community team if you have one via the GP for a Parkinson’s nurse, OT, physio, dietitian.

Some difficult conversations need to be had about future care, DNR, peg feeding, all things the medical professionals/ hospice can help with.

The best way someone described it to me in illness I knew, was it’s like motor neurone with Parkinson’s and potentially dementia thrown in.

Please note this is my experience, others will be different.

X

[mumnme in reply to Kelmisty]

oh Kelmisty, your mum sounds exactly the same as mine.

The home is trialing the urine wicking machines, which avoids her trips to the toilet overnight and any falls. purewickathome.com/all-prod...

My mum is aware as well and coughs when drinking. Dystonia down left hand side. No balance, can only lay down or sit in wheelchair and being upright makes her head feel too heavy to hold up.

I too looked after her at home but due to working full time and her increasing needs, I have had to place her in a aged care home. A constant exuberant cost to myself.

I just hope my job continues and her suffering ends and she can be at peace. A recent trip to the neurologist, he said she is in the final stages and gives approx a year to live.

It is heartbreaking to see the decline in her, she was such an active person. I too am tired and exhausted from the strain of it all, full time employment, daily visits and management of her affairs.

Take care, everyone. x

[Kelmisty in reply to mumnme]

Yes very similar, know the feeling of full time working and caring + everything else.

Will look into the purewick thing never heard of it. Thanks x

[Tulipstaffie]

Hi, as you know everyone’s journey is different. My 78 year old husband is 3 years in and now uses a walker. He suffers with extreme apathy and barely speaks and when he does it is quiet and slurry. He does occasionally fall and there is no rhyme or reason when or why. He rarely what’s to leave the house unless it’s for an appointment. There are moments of clarity and humour which I cherish.

I found to try not to think or worry about what might happen (not always easy). Just take each day at a time. As mentioned join here.

[Pinkcamelia in reply to Tulipstaffie]

Sounds exactly like my husband. Except he has had numerous falls.

[Kiwitch]

As one of the previous responders said - join PSP association they are very helpful. My husband was diagnosed with PSP 3 years ago after 4 years of being told he had frontal temporal dementia.

He has been in care for two years now BUT without PSPA would not have got funding for his care.

He has refused a PEG and has DNR in place

All very difficult conversations but as he continues to decline everyone knows what is wanted

[timbowPSP]

Hiya .... I am 82, male, with PSP diag 6 yrs ago, still active and social but no driving, and mobility decreasing. Have kept a record of meds, exercises, therapies, and advice offered and given. Comprehensive and now 7 pages. Happy to email u a copy if you send me ur email address, as too bulky to send on this platform. V best wishes TimbowPSP

[Dance1955]

hi warrior so sorry for your brothers diagnosis I just want to say it’s very complexed and every one is different but not much educational out there

With my husband I treated the symptoms and I researched equipment and medication and asked doctors for what he needed not what they thought he needed !

Trust yourself ( or whoever is caring for your brother's) instinct you will know him better then any doctor

He will need someone to advocate for him

He may need thickener for drinks if he’s coughing and choking he may need a special walker designed for Parkinson’s called a U -step walker

Eye drops for dry eyes as these patients don’t seem to blink eventually he may need puréed food and atropine drops under the tongue half an hour before meals to stop the coughing and choking

These are some of the things I researched and used and they worked basically the doctors followed my instructions as they said they is “no treatment and no cure” don’t be afraid to take control as that’s what we have to do

As kelmisty said it’s like Motor neurone Parkinson’s and potentially dementia thrown in

I totally agree I am in Australia I didn’t get much help or support from any professionals including doctors nursing homes or hospitals so much ignorance with this disease I’m sad to say 🙏🏻

[Rudywarrior in reply to Dance1955]

Thank you for your reply really helpful and i will try some of the things you suggested. Such an awful disease and with no guidance or help makes it even more unbearable. Ill defo try the drops and thickner - appreciate you help x