Advanced stage?

[whiskey50]

Hi my dad was diagnosed last year. Like many was first diagnosed with Parkinson's disease. Every few months he seems to deteriorate. I won't say he's displayed symptoms for many years prior to diagnosis. He can no longer walk, speech is greatly affected , eye movement has changed dramatically, food needs minced up on level 5 and liquids thickened. Regards family really would like to know what is going to happen next?? Is he at the advanced phase of the disease?

[OllieFisher1]

My father has been like that for a year now......He deteriorates, then recovers. I understand when they stop eating, or aspirating on food, is when things start going downhill. All the best.

[Kelmisty]

Hi,

My mum isn’t quiet as advanced yet, but she isn’t far behind really as she definitely deteriorating at a regular pace, from my research it’s isn’t that simple, whilst they are describe elements of the illness they can’t give you answers of how quickly, how long, what definitely will happen due to the rareness of the condition(s).

This in my opinion is part of the cruelty, the scary unknown for both patient and family.

❤️

[bbr49]

My husband is sadly all of the above - he is now in full time care but I go and feed him twice a day as his eyes no longer move up and down and they focus out to the one side. He was diagnosed 6 years ago but many signs before that. He is now sleeping a lot - they can even bed bath him and he doesn’t wake. It’s such a horrid disease.

[Lizzigator]

Hello whiskey50,

Firstly, I am so sorry that your father has this horrible disease and that as a family you have to witness; it truly is a harrowing journey to watch a loved one travel.

I have spent the last 5 years caring for my mother who died just before this last Christmas. The best comments and advice I can give based on my experience is that each journey through the disease is bespoke to that person despite there being common symptoms and mile stones.

For the last 2 years of my mother’s life she could not walk, and food was puréed and drinks thickened. She lost her speech for the last 6 months too. Finally her swallowing stopped and that is when she entered the ‘end of life’ phase for 10 days.

I kept looking for the end of life phase so that I could manage my expectations and emotions and those of my family, but the disease is insidious and each time you think the end must be nigh, they recover slightly and soldier on.

There really isn’t a sign post on how long each phase is and it purely depends on how strong your Dad is and his strength of character.

The only advice I can give is just to keep caring for your Dad like each day is his last day.

I hope that this might go some way to helping you, and I send you my my well wishes to you.

Libby

[jeannette1964]

my mum was same aspiration pneumonia got her in end bless her to be truthful it was a blessing good luckxxx

[Jodi999]

I'm sorry your dad has this horrible disease, my mother in law seems to be at a similar stage. Can't walk, hardly talks, double incontinent for over a year, soft food only, choking on water, keeps at least 1 eye closed a lot. I've been thinking the same as you but it just seems the suffering keeps getting worse. She was diagnosed april 2020 but had been falling occasionally a few times before. From reading other people's stories I think we can only look at it day by day. There's good and bad days but the bad seem to be getting the upper hand at this point.

[AliBee1]

Hi, What Lizziegator has said to you says it all. The progression of this horrible disease is different for everyone. Have you phoned the Helpline at the PSP Association as they will probably be the best people to talk to apart from those on this forum. Big hug. Love AliBee

[captainsdaughter]

Hi,

My father was also diagnosed last year and deteriorated quickly between July-October last year to the point he couldn’t walk, was urinary incontinent and was struggling with food. At that time we collectively decided he needed full time nursing care so he moved into a nursing home. I didn’t think he’d make it to Christmas but he’s still with us. Although he does need more help than in October the speed of deterioration doesn’t seem as fast. I’m the same as you, trying to predict how close to the end we are but the disease is so unpredictable it’s virtually impossible. My sympathy is with you going through this too.

[bichonbear1]

Hi, what we have learnt through our journey is that the unpredictability, steep decline and then plateau are some of the cruelest elements. Mum had a steep decline March of last year and since then has been unable to move, has double incontinence, has severe cognitive issues and relies on care and support with everything. This time last year we thought we would be lucky to have her with us for another 6 months. A year later and mum has not had any further decline but we have had some scary hospital admissions for infections and we nearly lost mum to sepsis just before Christmas. We are making the most of mum being with us, her strength of character and inner resilience is incredible. We have a close family, a tight network of friends and the carers are mums new friends. Singing, watching the birds in the garden, laughter and getting mum out and about in a specialist wheelchair (even if a quick stroll between care sessions around the local park) are what I believe are helping keeping mum at this plateau (keeping the soul and spirit alive). We are making the most of the moments as one day that unpredictable nature of the disease will take hold but we are desperately trying to not let that inevitability rule and all our lives become a waiting game. A little bit of life’s normality is going a long way. Mum is doing incredible and I admire her so much along with my dad who cares for my mum so amazingly. They never thought their 60s would be like this. Sending you best wishes.

[wear1947]

Hi, give a look to Rodizio Rodizio contributions. Good Luck. Hugs!