i hate PSP

my mum was diagnosed with PSP 3.5 years ago, and it has progressed so so quickly, i wonder where the time has went, it is unfortunate now that she has been given days left which is so not fair, this is such a nasty illness, we are all mortified how quick it has progressed

[Kelmisty]

No words to answer your questions but this illness is crap.

Sorry

[Eaton7]

as a PSP widow I fully understand your feelings, it is such a devastating illness. I hope that through your mum’s final days you get the chance to be close to her and demonstrate the love between you, even though that may only be by holding her hand or stroking her brow. It will be hard but you will gain strength from supporting her in her final days.

Afterwards you will need to take time to adjust before, eventually, the time will come when can look back beyond these recent years to remember the person that you always knew and loved.

[Leosta]

Unfortunately that's how it happens. PSP is a vile disease. Thinking of you. Take care. 🙏

[LittleOllie]

Hi, we are going through the same right now. My mom has been bed bound since Monday, stopped eating and drinking. It's the most awful disease Ive ever come across. All we can do is try to make her comfortable and she's not in any pain. I'm trying to support my dad who has cared for her for the last 7yrs with this nightmare. 😞

[brandysuki]

my wife is suddenly deteriorating and is almost unable to walk, she is falling every day and had to visit hospital yesterday after a head bleed. I am now finding it almost impossible to pick her up. Any advice would be greatly appreciate.

[Sun-flowerwearer]

.. I am so sorry to hear Hidden and Little Ollie are coping with the final days of their loved ones. It’s so hard to predict when the end is coming. My husband stopped eating and had two bouts of pneumonia in recent weeks and GP and Hospice felt time was short but he has started swallowing ensures so I think we have longer to go. Emotionally it’s shattering as I am constantly stressed and checking on him. He doesn’t move or speak but he’s breathing and drinking ensures.

Brandysuki falling over with this disease is inevitable. The only way I’ve managed is to have eyes on my husband continuously. If my back is turned the psp impulse control kicks in and he tries to stand and falls. He can’t stand or walk but somehow they find a way to launch themselves into space. I have carers come in for a couple of hours each day so I can walk my dogs, go into the garden, go out but otherwise fir the other 22 hours a day I never leave his side. I have his hospital bed in the lounge and a single bed for me beside it. If he falls I’m able to lift him as he’s lost a lot of weight and im quite strong but it’s very stressful. We do have a sara steady for transfers from bed to recliner and at one point the OT gave me a gait belt but I didn’t feel that was helpful. The Sara steady was fantastic.

Love to all x