Posts - PSP Association | HealthUnlocked

PSP Association

9,728 members•11,604 posts

All posts for October 2019

Joint pain?

Sandy has complained of joint pain off and on. He thinks he's coming down with something but so far it hasn't developed into a cold/virus. Is anyone else...

Sandy has complained of joint pain off and on. He thinks he's coming down with s...

•5 years ago

Ng tube complications in psp disease

My mother is suffering from PSP disease for last 7 years, first diagnosed in mid 2012 by Dr. Sunil Pradhan. Probably she is in her last stage now. PEG tube is...

My mother is suffering from PSP disease for last 7 years, first diagnosed in mid...

•5 years ago

Larry died this morning.

I woke this morning around 5 hearing Larry call me in my dream. I got a call from hospice half an hour later that he died around that time. I went over with...

I woke this morning around 5 hearing Larry call me in my dream. I got a call fro...

•5 years ago

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Still Hanging in There..

Hi all Its been a long time since I have been on here. Mum is now in her 10th year of CBD and is in the advanced stages. She is unable to move or communicate...

Hi all Its been a long time since I have been on here. Mum is now in her 10th ye...

•5 years ago

Still holding on

My beautiful mother has managed to keep going despite no fluids for 5 days. It’s her youngest granddaughters 17th birthday and she has stuck around. Her...

My beautiful mother has managed to keep going despite no fluids for 5 days. It’s...

•5 years ago

Trent Barton are looking for a charity partner

Just to let people know Trent Barton are looking for a new charity partner. I have attached the information. Mum sadly died on 9th September from PSP and I...

Just to let people know Trent Barton are looking for a new charity partner. I ha...

•5 years ago

Donations from Amazon

I am just writing this as my daughter found a news item from AndrewP on Twitter, advertising people who place orders with Amazon, that if you log in via:...

I am just writing this as my daughter found a news item from AndrewP on Twitter,...

•5 years ago

Larry Update

Larry is failing rapidly now. His nurse thinks he may die later this week. He was to have come home today from respite care. Taking a cue from the advice on...

Larry is failing rapidly now. His nurse thinks he may die later this week. He wa...

•5 years ago

Depression in CBD and Speech therapy in non native language

Dear all, It's my first time posting here, there is so much i want to say as this has been the most difficult year of my life, but i will try and keep it to a...

Dear all, It's my first time posting here, there is so much i want to say as thi...

•5 years ago

Joyful news in the midst of it all!

I just have to share with you all that we had our first grandchild (baby girl) two days ago. She is and will continue to be such a gift to our family,...

I just have to share with you all that we had our first grandchild (baby girl) t...

•5 years ago

Memorial Service and Feeling Sad

Today I have felt really sad, I went to a memorial service for Steve and all the other people that had passed away in the QE hospital over the last year. I...

Today I have felt really sad, I went to a memorial service for Steve and all the...

•5 years ago

Larry is failing

Larry’s cousin Diane went to the hospice today to see Larry. A nurse stopped her before she left to say Larry was failing. He may have a few weeks left. I knew...

Larry’s cousin Diane went to the hospice today to see Larry. A nurse stopped her...

•5 years ago

Wheelchair Accessible Van

Is there anyone in the Toronto area that has a van that is 'wheelchair' accessible for sale...I am looking for one for my sister who has CBD..She is in a Long...

Is there anyone in the Toronto area that has a van that is 'wheelchair' accessib...

•5 years ago

Be the first to reply

Mum is gone

Hi everyone, my mum Margaret had just lost her battle and breathed her last breath on 25 oct 2019 after almost 7 years from first diagnosis. It has been a...

Hi everyone, my mum Margaret had just lost her battle and breathed her last brea...

•5 years ago

Is anyone taking lion's mane for their PSP?

Is anyone taking lion's mane for their PSP? Just seen a very interesting video where mycologist Paul Stamets is interviewed by Joe Rogan. There have been some...

Is anyone taking lion's mane for their PSP? Just seen a very interesting video w...

•5 years ago

Perfect Day

I consider this a super success! Mom absolutely loved this experience, and everyone was so very accommodating! Making memories as long as I can! 2 hour...

I consider this a super success! Mom absolutely loved this experience, and every...

•5 years ago

All aboard!

So today is the day! Bucket list ✔️✔️ Mom listed months ago that she had never been on a train, and her favorite time of years is fall foliage .... Bam!...

So today is the day! Bucket list ✔️✔️ Mom listed months ago that she had never b...

•5 years ago

Respite report

I think the respite people are a little panicked. I have had a call from them both days Larry has been there. I am having to reassure them. Larry is groaning....

I think the respite people are a little panicked. I have had a call from them bo...

•5 years ago

Thankful for Friend(s)

This is a forum that will forever be a gift to me ... now and for whatever the future holds. I find myself drawn to knowing how you are all doing ... blessings...

This is a forum that will forever be a gift to me ... now and for whatever the f...

•5 years ago

Appointee

Hello all has anyone applied to be an appointee with the DWP please. What is the process and what is discussed in the visit please. Thank you in anticipation

Hello all has anyone applied to be an appointee with the DWP please. What is the...

•5 years ago

Wheelchair car for sale

Hi! Is there anyone out there caring for someone with PSP or similar that needs a car that can accommodate a wheelchair? My father is selling a Renault...

Hi! Is there anyone out there caring for someone with PSP or similar that needs...

•5 years ago

Poo has finally gone.

Just a brief update, after 5 weeks of constipation and a load of Enemas we finally had a nurse say it was impossible and has removed it manually. Very...

Just a brief update, after 5 weeks of constipation and a load of Enemas we final...

•5 years ago

Another UTI

Mum had another UTI that resulted in a hospital visit. They seem to be hitting her full force. Is this something that’s likely to be common with CBD sufferers?...

Mum had another UTI that resulted in a hospital visit. They seem to be hitting h...

•5 years ago

Respite Care

Larry is off for five days of respite care. I need the break but it broke my heart to see him loaded into the ambulance and taken away. Came into the house a...

Larry is off for five days of respite care. I need the break but it broke my hea...

•5 years ago

Afternoon Naps & Pillow Talk

I have found the joy in her new normal ... she doesn’t necessarily sleep every time, she rests ... so, I rest with her. Yesterday, we shared some special...

I have found the joy in her new normal ... she doesn’t necessarily sleep every t...

•5 years ago

Rivastigmine (improvement?)

The doctor increased Rivastigmine to help with cognitive functions. We went from 4.6 mg patch to 9.5 mg patch. We started the new dosage last Saturday so...

The doctor increased Rivastigmine to help with cognitive functions. We went fro...

•5 years ago

Drooling starting

Hi my wife off 79 yrs who has probably started with PSP 5 years ago ha suddenly started drooling .Could anyone with experience off this please post a reply....

Hi my wife off 79 yrs who has probably started with PSP 5 years ago ha suddenly ...

•5 years ago

I feel Charlie slipping away

Hello all I’m pretty sure I know the answer but I come to all of for advice, Charlie has had MSA now for 13 years now yesterday and again today all he wants to...

Hello all I’m pretty sure I know the answer but I come to all of for advice, Cha...

•5 years ago

Choosing me.

Today I have decided I have done all I can do. My husband is in a loving nursing home. His PSP is slow... With lots of ups and downs. I have decided to allow...

Today I have decided I have done all I can do. My husband is in a loving nursing...

•5 years ago

Boris

Hi I’ve just joined this . My husband was diagnosed over 4 years ago and progressed slowly at first but has speeded up these last several months . It’s grim...

Hi I’ve just joined this . My husband was diagnosed over 4 years ago and progres...

Sunsetboulevard

•5 years ago

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