Lack of Mobility

[Jockyspaniel]

My brother has just been diagnosed with PSP and been in hospital for last 3 months. He is 70 and had poor mobility for over a year before going into hospital after a fall. He has been essentially bedridden for 3 months and a little confused at times. Just wondering if he will get back on his feet with some rehab and what stage we are in for this horrible disease? Whatever drugs he is getting ( Lepodova? ) has helped a little but not sure if this is short term relief. Apparently he is too young to go from the neurological ward to a medicine ward for the elderly! He lives alone and concerned he won’t be able to return to his former home. Any experience or advice greatly appreciated.

[slimweiss]

Hi

My husband was just diagnosed with PSP (Lewy Body Dementia). From what I've read, once the falls and hospitalizations start happening, that indicates a more severe stage. Life expectancy is 5-7 years after diagnosis. Pneumonia is usually what causes death. My husband was incorrectly diagnosed in 2019 with Parkinson's and was treated for that but he continued to decline pretty quickly. Fortunately he is pretty mobile and has a great appetite. He has fallen several times with one fall causing a fracture of a vertebrae and he recovered pretty well after a kyphoplasty procedure to cement the fracture. No falls recently. this is a horrible disease with no great treatment options. I'm so sorry that your brother has this. I wish I had good things to say about it.

[Jockyspaniel in reply to slimweiss]

Thank you so much for your honest assessment. As you say this condition is truly horrible. Just difficult to get a true understanding of the pathway ahead. ❤️❤️

[OllieFisher1]

Hi. Your situation has some similarities to mine except the durations seem different. You may click on my profile and read my first posts and it may resonate. Not sue what you mean by poor mobility, but my father prior to his hospitalisation was slow but independent. Was in hospital for 5 weeks, then home for two to see if he would improve in his own home. That lasted 2 weeks and he had to go to a hospital wing in a resthome which will be one year in June. While he does have days of improvements, the trajectory now is that he is more weak and sleepy. He talks quietly and struggles to find the right words. He needs help with everything and needs the use of a wheelchair to go from A to B, and resthome often use mobility aids for showering and toileting as well as a hoist to move him sometimes. No answers but am hoping he doesn't suffer on too long.

[Jockyspaniel in reply to OllieFisher1]

Ollie- Thanks for your reply. My brothers condition is that he needs to be hoisted out of bed and not used his walking frame for at least 3 months. I am not sure if he will respond to any physio in hospital and is constantly complaining of aches and pains. Although he is confused at times, the real issue is the fact he is essentially bedridden. Guess I am just waiting to see what the hospital/social services say about where he goes as no longer an acute patient in the Neurology Ward.

[OllieFisher1 in reply to Jockyspaniel]

My father was confused in hospital a lot. He was in such a delierium during that time, that he no longer remembers any of it, nor being home for two weeks. He never even had a walker before his fall. It was like he just fell off a cliff. He was given a shower stool about 2 years before his fall or descent so to speak and only first used it when he was discharged from the Neuro ward and was home for two weeks. Certainly needs at least two people to be full time carers if he goes home, otherwise it sounds like your brother will have the same fate. Dad is in a resthome very close to my mother, so gets a lot of home visits which really helps him, so if thats an option it has a lot of benefits.

[Kelmisty]

Hi!

My Mum has PSP & CBD but the neurological physio told me that the exercises she’s been given are only to try to delay her not being able to walk. At the moment she is deteriorating all the time and can only really just get up and move around with a frame. Her coordination is awful and I’ve been told they expect her to be immobile by the end of the year. They think she’s had this around 4.5 years now.

My Mum currently lives in a extra care flat (warden on site 24/7) but whilst she doesn’t want to go to a care home in the future I might have to insist as it’s going to be for her own safety. As from what I’ve been told the thought process of being able to get up and go won’t reduce but when she does she will fall.

Mum also has carers in the morning and lunchtime assistance to the restaurant as she can’t use her left arm/hand at all. I then go five times a week to do everything carers don’t and spend time with her.

It’s not an easy illness and your brother will need care.

[Jockyspaniel in reply to Kelmisty]

Kelmisty —- Sounds like we are in a similar situation. I do think my brother will need care although he is hoping to return home but to be honest he will not be able to cope on his own. Just a little concerned that he might be sent home with a care package with health visits 4 times a day. Don’t think this will be adequate for his needs. Challenging times ahead I fear.

[Kelmisty in reply to Jockyspaniel]

My advice, be prepared to fight everything, so many services don’t understand the illness and make sure you get power of attorney sorted or someone has it.

It’s taken months for my Mums to come through which it just has.

Another way of seeking support might be to reach out to your local hospice, I’m in Kent and mine has been amazing helping mainly me with the carer side of things and paperwork e.g higher rate attendance allowance, disabled badge.

It’s a tough road ahead, I can’t lie, I’m exhausted as I work full time too. But she’s my Mum and I need to do it.

[Jockyspaniel in reply to Kelmisty]

Great advice. Yes just managed to fast track a POA in 10 days in Scotland. Also applied to back date Attendance Allowance although this is now suspended as brother been in hospital for 3 months now.