Psp help

[Mp100]

Hi all,

My dad is 79 and was diagnosed with PSP in early 2013. He has deteriorated significantly in the past year or so.

He now almost never speaks and his vision is badly impaired. He is still walking with a frame.

However it can take him many minutes to move from his stairlift into the kitchen or anywhere downstairs.

When he sits he now does so with a pronounced lean to the right and he also appears to drag his right foot when moving around.

He also falls regularly - particularly when he is in bed. He also tends to move around in bed and my mother sometimes finds him facing the wrong way or even with his feet up against the wall.

Recently he has all but stopped eating - taking very small amounts of food - although he does eat biscuits and cake. He also refuses his medication and my mother (his primary carer) is finding it increasingly difficult to manage his pills. He often chokes while eating and drinking - he does drink regularly from a beaker of water so generally isn't dehydrated. The reduced intake of food has led to a dramatic loss in weight.

He was seen my an eating specialist a week or so ago but none of their recommendations have helped.

The family are increasing distressed by his condition and I wondered if anyone could offer any advice and guidance about it.

Thanks

[Pentland]

Hi. I am very sorry to read about your Dad. As he is losing so much weight has anyone suggested it may be time for a feeding tube? I have no personal experience of this but I know a number of people on this site care for someone who has to be fed like this. It may be worth an enquiry. Sorry not to be of more help.

Margaret

[Mp100 in reply to Pentland]

Thank you very much for your reply. The eating specialist made no mention of a feeding tube at this stage.

[easterncedar]

I am sorry for your father and mother and the rest of the family. It seems as if the main symptoms of PSP are all hitting your father at once. My sweetheart also is eating less and less, and I feel that he will just fade out this way. Knowing this doesn't stop me from trying to coax him to eat more, I'm afraid. He is largely unable to walk now, although as recently as Friday was able to insist on getting up and going, with me supporting him, for a little way.

The hospice nurse last week gave me a booklet about dying, and one of the first indicators is refusal of food, especially meat at first. From this point it's three months at the outside, it says. I think we have much less. I have decided against artificial feeding.

Good luck to you and yours, ec

[Mp100 in reply to easterncedar]

Thanks for replying. We really don't know what stage my dad is at currently. Hopefully this is just a phase.

[Kevin_1]

Hi

Welcome

Are you in the UK?

It sounds like you need to activate support networks... get help.

If you are in the UK I can give you information which might help.

If not say what country you are in and there are folk here with a lot of experience who I am sure will help.

It sounds like you need to get support and services in.

I'm sorry... It does sound tough.

Warmly

Kevin

[Mp100 in reply to Kevin_1]

Hi and thank you for replying. We are on the London/Essex borders. We have contacted the area PD nurse, our PSP Association area contact and the local Hospice unit (who have previously seen him as a day patient) and hopefully we can get hin assessed.

He has been seen recently by his GP but we need to get him seen by PSP specialists.

[Kevin_1 in reply to Mp100]

Hi Mp100

It sounds as if you have got things moving.

You need to ask the GP to refer him to a Neurologist. It sounds like your withing shouting distance of the UCLH. Professor Morris is a specialist in PSP / CBD. If asked your GP might refer you there.

All the best

Kevin

[Mary613]

My mom just saw a speech pathologist about swallowing issues. Her choking has been mostly on liquids. They recommended thickening all liquids with thicken up - a powder sold at medical supply stores. We have also started giving mom her pills in spoonful of yogurt - rather than with water - which has been a great help.

[Mp100 in reply to Mary613]

Thanks for your reply. Unfortunately my dad has got wise to yogurt trick!

[daddyt]

You'll find plenty of advice and support, the pool of combined PSP, CBD experience is second to none...I'm sure find some practical advice.

[Mp100 in reply to daddyt]

Thanks. Just wanted to thank everyone for replying. It has meant a lot to me.

[1RobK]

Mp100

The disease Sucks!

Everything your describing I've experienced with my mom. My mom responded to sinimet, even better when she was moved into a care facility that administer it on a regimented basis.

The anxiety, moving around in bed was explained to me a few weeks ago in the hospital as a desire to nest, find a comfortable place to rest. Hospice recommended Lorazepam, this took the edge off. Mom should have had it recommended sooner then later as she had been restless for some time.

Last November my mom had a Peg installed as she was losing weight to fast, and started declining to the point of being incoherent. It took two weeks to build herself back, she was 72. We had the talk requarding the peg just prior, as the care facility suggested.

I have to tell u, I saw my mom slow down eating, her body was shutting down. They say the body produces enzymes that makes one feel satisfied on less food, it does.

The problem we had after the peg, was the anxiety caused mom to move around enough that it got her in trouble, falling out of bed, nurses found her feet higher then her head when she got ahold of the bed control while on a min 15 minute watch, last, she managed to position herself laying flat across the bed with her feed off. Both times they feel that some of the feeding had worked it's way into her lungs. The last time she was on lorazepam which seemed not to work as well in her very late stage.

Read the posts on Pegs, have the discussions with your dad, it isn't easy, I told my mom I was selfish to suggest the tube seeing how hard it was for her in the hospital, it did extend her life 5 months with no quality.

I'm sorry

Rob

[Mp100 in reply to 1RobK]

Hi Rob - thanks for your reply. We are seeing our PD nurse next week to get an assessment. Unfortunately my father is still taking very little food.

Our GP advised against a feeding tube for the same reasons that you highlight above.