Posts - PSP Association | HealthUnlocked

PSP Association

9,266 members • 11,356 posts

All posts for December 2018

I love you Dad

Dear All, this is my favourite picture of my beloved Dad with my daughter when she was little. He passed away on the 21st Nov but we didn’t have the funeral...

Dear All, this is my favourite picture of my beloved Dad with my daughter when s...

Didalju

•5 years ago

11 Replies

CHC

We have again been turned down for CHC being told John does not have primary health need. It looks like he needs to be at end of life to qualify. Been a bad...

We have again been turned down for CHC being told John does not have primary hea...

Dickenson2

•5 years ago

12 Replies

CBD palliative care

Mum was admitted to hospital yesterday with suspected UTI. Had two lots of antibiotics, high temp, high heart rate and has not woke up. I sat with her all...

Mum was admitted to hospital yesterday with suspected UTI. Had two lots of anti...

17052011

•5 years ago

18 Replies

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Year on

Hi So many new names appearing every time I check in on you all, but still many familiar from many months ago. It is a year yesterday since my my darling man...

Hi So many new names appearing every time I check in on you all, but still many ...

Julieandrog

•5 years ago

18 Replies

All we want for Christmas

If you've already purchased or are considering buying either one, or both of these books please consider leaving a review. Book reviews are incredibly...

If you've already purchased or are considering buying either one, or both of the...

daddyt

•5 years ago

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Happy Solstice and a Peaceful New Year

Sending love to all of my friends and comrades here. Here's a picture from Niagara Falls, my home town, where the mist freezes on the trees so prettily.

Sending love to all of my friends and comrades here. Here's a picture from Niaga...

easterncedar

•5 years ago

33 Replies

I know it is Feel Good Friday but ...

I am trying so hard to be positive but not doing a terribly good job of it at the moment. Nigel developed a bug that was only resisitent to IV antibiotics so...

I am trying so hard to be positive but not doing a terribly good job of it at th...

AliBee1

•5 years ago

28 Replies

Made it!!

Can hardly believe it but I actually have 2 nights away!!! You may recall I planned a 2 night respite break starting today but care agency on Friday announced...

Can hardly believe it but I actually have 2 nights away!!! You may recall I plan...

Tippyleaf

•5 years ago

22 Replies

drugs

drugs and psp

pandyjohn

•5 years ago

6 Replies

One year on

Tomorrow is the first anniversary of my Dad’s funeral. He died on 4.12.17. from PSP and it will be the last of many ‘firsts’. By strange coincidence the sale...

Tomorrow is the first anniversary of my Dad’s funeral. He died on 4.12.17. from ...

JR61

•5 years ago

7 Replies

Ordering Nilotinib

I tried to order Nilotinib, sold as Tasigma in many countries. I asked my hospital consultant= if she was prepared to prescribe if and she said no. So I have...

I tried to order Nilotinib, sold as Tasigma in many countries. I asked my hospit...

pandyjohn

•5 years ago

3 Replies

Spent time with contestants of The Voice!

This just made mom’s week! The contestants of The Voice were staying at our hotel in Burbank, so she got to meet several of them. Happy Momma! Making memories.

This just made mom’s week! The contestants of The Voice were staying at our hote...

bazooka111

•5 years ago

1 Reply

California sunshine

I decided to take my Mom with me on a business trip! It was great! She loved staying in Burbank, and then we went to see the ocean! Smiles all day! One day at...

I decided to take my Mom with me on a business trip! It was great! She loved sta...

bazooka111

•5 years ago

5 Replies

Xmas Present

This may seem a silly question. But what can we buy for my Mum with PSP for Xmas. She can’t move anymore and sits in her wheelchair all day, just wondered if...

This may seem a silly question. But what can we buy for my Mum with PSP for Xmas...

Wardy01

•5 years ago

19 Replies

I managed to capture a sunrise today...........

With the camera on my window cill ............. I am going to miss these views so much next year when I move into a 24hr care home. I still hope to manage to...

With the camera on my window cill ............. I am going to miss these views s...

Bargiepat

•5 years ago

29 Replies

Remembering with a Hummingbird

Ratcliffe

•5 years ago

11 Replies

PSP drug update.

Not sure how many of you in the USA were asked to be interviewed by a drug company? 4 people at my local PSP support group were selected, my wife and I were...

Not sure how many of you in the USA were asked to be interviewed by a drug compa...

grafixapn

•5 years ago

3 Replies

Cbd and head/eye pain

Hi all Am a carer for my mum who has been diagnosed with cbd about 2 years ago but had symptoms for at least 3 years before. She is non-verbal now mostly so...

Hi all Am a carer for my mum who has been diagnosed with cbd about 2 years ago b...

elvira4u

•5 years ago

6 Replies

Hummingbird Sign

I've read all I can find on the hummingbird sign/PSP, but I can't find out WHEN the hummingbird sign is visible ?? Husband had four MRI scans over the last 5...

I've read all I can find on the hummingbird sign/PSP, but I can't find out WHEN ...

Khartt

•5 years ago

7 Replies

Sorry for to add

Forgot to put picture on heads gone Suex

Suebatt

•5 years ago

8 Replies

Another way for hummingbird

Hi All thought I would share this with you as you might like this as I do My sister made the gazebo so I could put the bird in with a small urn for some of...

Hi All thought I would share this with you as you might like this as I do My si...

Suebatt

•5 years ago

4 Replies

Responding to why your doctor hasn't contacted a neurologist that is willing to share his knowledge using a drug that slows down PSP

I received replies to my post about the lack of your doctor's contacting my wife's neurologist due to the high cost of the drug. The cost of the drug is...

I received replies to my post about the lack of your doctor's contacting my wife...

grafixapn

•5 years ago

4 Replies

Crushing tablets - guidance please

Dear All I have booked 2 nights of respite for next week- I am really tired - usually up 8-10 times per night - hubby has not slept for more than 90 mins on a...

Dear All I have booked 2 nights of respite for next week- I am really tired - us...

Tippyleaf

•5 years ago

16 Replies

Carers versus Sufferers

I have noticed that most of the replies I have had to various posts have come from people who are caring for someone, or who have already lost them to the...

I have noticed that most of the replies I have had to various posts have come fr...

pandyjohn

•5 years ago

37 Replies

Pain killers

Hi can anyone taking morphene let me know if they are taking other pain killers with it besides paracetamol, Colin is still suffering with pain and morphene...

Hi can anyone taking morphene let me know if they are taking other pain killers ...

Helen119

•5 years ago

10 Replies

One year today

It is one year today that my hubby passed away after a four year PSP battle. It has been a long and difficult year and not a day goes by without me thinking...

It is one year today that my hubby passed away after a four year PSP battle. It...

Zeberdee

•5 years ago

6 Replies

George

I didn’t finish the other post but would like to day I didn’t think it would, hope you are ok, just would love to see him one more than to tell him I loved...

I didn’t finish the other post but would like to day I didn’t think it would, ho...

Yvonneandgeorge

•5 years ago

18 Replies

Merry Christmas

I would like to thank you all for being there for me, Amanda was my life line she keep my sane, thank you Amanda love yo to the moon and back again beautiful...

I would like to thank you all for being there for me, Amanda was my life line sh...

Yvonneandgeorge

•5 years ago

42 Replies

Merry Christmas Jillann!

So glad to see your 'likes' and know you are still in touch with us 👏 Hope your Christmas is good and full of love! ❤️💚❤️💚. Anne G.

So glad to see your 'likes' and know you are still in touch with us 👏 Hope your...

raincitygirl

•5 years ago

7 Replies

What you need to know if you are new to PSP

Many have found out that it takes seeing the right doctor before you learn that you have PSP. It took 3 years for my wife who was seeing a Neurologist before...

Many have found out that it takes seeing the right doctor before you learn that ...

grafixapn

•5 years ago

1 Reply

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for December 2018

I love you Dad

CHC

CBD palliative care

Year on

All we want for Christmas

Happy Solstice and a Peaceful New Year

I know it is Feel Good Friday but ...

Made it!!

drugs

One year on

Ordering Nilotinib

Spent time with contestants of The Voice!

California sunshine

Xmas Present

I managed to capture a sunrise today...........

Remembering with a Hummingbird

PSP drug update.

Cbd and head/eye pain

Hummingbird Sign

Sorry for to add

Another way for hummingbird

Responding to why your doctor hasn't contacted a neurologist that is willing to share his knowledge using a drug that slows down PSP

Crushing tablets - guidance please

Carers versus Sufferers

Pain killers

One year today

George

Merry Christmas

Merry Christmas Jillann!

What you need to know if you are new to PSP

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive