Any info would be appreciated.

[mwv1]

Hello all. This site has provided me lots of info that I couldn’t find elsewhere. My mom has psp and has gotten to the point where she falls daily. She and my dad live in an independent apartment, but the time has come for a change. She recently fractured her L1 in a fall, and is in terrible pain. I am with them several times a week,but this is wearing my dad out,. does anyone know if the cumulative effects of each fall is an issue with PSP? I just have no idea where we are on the horrible path.

[Ratcliffe]

I always felt that whenever David had a bad fall, that it seemed to nudge the PSP on to the next stage. As others pointed out to me, it was more likely that PSP had moved on, causing the fall.

The two do seem to go hand in hand.

Is the apartment one of these assisted living places where they have wardens etc? If not, then that might be an idea so that they can press a call button if anything happens.

[mwv1 in reply to Ratcliffe]

Thanks so much for your reply. 😀

[Birdman34265]

Hi, mwv1 the falls that your mother has is part of the psp progress , always backwards and will get worse i am sorry to say, psp affects the

Ballance part of the brain,the progress of psp is different from person to another,my wife Kathy is in her 4th year and is now in a wheelchair,she

fell backwards into the wall ,i think from a walker to a wheelchair was about 18months.the progress of my Kathy was

cognitive decline

eyes , looking left and right only

balance ,falls

In a wheelchair , movement slowing down

speech is difficult , cognitive decline worse but can remember

This disease is a terrible ,i am 71 years old and looking after her

is a hard job,i wish you all the best on your psp journey

Peter and Kathy

[mwv1 in reply to Birdman34265]

Thanks so much for your reply. 😀 I’ll keep you in my prayers

[shasha in reply to mwv1]

MY WONDERFUL HUSBAND IS 82 AND IS LOOKING AFTER ME SO WELL -- I HAVE HAD THIS DISEASE dianosed in 2010 ( ALTHoUGHI Had it long before that) SO I AM DOING WELL …. THANKS TO MY DARLING HUSBAND

[Heady in reply to shasha]

Shasha, my darling! How are you? What a wonderful surprise to see your name pop up! How is life in sunny Wales?

Sending big hug and much love

Lots of love

Anne

[shasha in reply to Heady]

HELLO MY DARLING == HOW ARE YOU ? WE ARE VERY HAPPY IN WALES AND ARE SO GLAD WE LEFT FRANCE ESPECIALY WITH ALL HIS BREXIT RUBBISH ..

MUCH LOVE TO YOU TOO

SHA SHA xxxx

[Melhukin]

My dads falls got worst every time he fell. Starting with the gentle backward falls back into his chair after getting up to quite bad falls that took him to hospital for stitches and he was often covered in bruises. He even broke my mums foot.

Frames were used around the house for him to stay mobile but he would still fall backwards with his frame. In the end my mum couldn’t manage at home with the caring needs and he’s been in a nursing home these past 2 1/2 years.

[mwv1 in reply to Melhukin]

Thanks so much for your reply. 😀

[Tippyleaf]

Sounds like you mom and dad need daily carers to support them. It must be very frightening for your dad ( and mom) Seeing a loved one fall makes you feel guilty and frustrated and there is so little you can do other than watch them and be at the ready.

Hope you can all get some support in the interim ask away here lots of hands on experience on this site!!

Love Tippy

Love Tippy

[mwv1 in reply to Tippyleaf]

Thanks so much for your reply. 😀

[Sonic47]

From my experience,now is the time to go all out for all the help u can possibly get re funding, neurological nurses, occupational therapists ,gp, neuro consultant, social worker etc etc... Don't wait bcos sadly it only gets worse & harder. Shout loud & long about needing help as it's the only way to get it.

[mwv1 in reply to Sonic47]

Thanks so much for your reply. 😀

[LuisRodicioRodicio]

Hi mwv1!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method.

By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.

Hug and luck.

Luis

[mwv1 in reply to LuisRodicioRodicio]

Thanks so much for your reply. 😀

[Kaylewis]

Yes we found with mum the only way was to say no more walking and we did everything by wheelchair to keep her safe, sad but was the only way.

[PSomani]

Hi. Sad to hear on the development of PsP for your mom.

My mom has PsP and the start was a series of fractures with one being in the spine about 5 years ago. Eventually over the period every fracture resulted in an overall downfall of the condition - the fractures immobilise the patient for anywhere from 6-8 weeks and the disease kind of takes over faster on account of inactivity of that limb etc . That’s why doctors will recommend a lot of physical activity for PsP patients.

You may want to look at putting grab bars / extra rails esp in the bathrooms.

A walking stick or walker may be a option to consider if the balance is posing a big issue presently.

Anshuman

[mwv1]

Thanks so much for your reply. 😀