Posts - PSP Association | HealthUnlocked

PSP Association

9,227 members • 11,328 posts

All posts for April 2014

Holding on to Hope

Hope comes in many forms, from the fingers-crossed-for-luck superficial hope to the deep and abiding Hope that faith brings. It is not a static thing but...

Hope comes in many forms, from the fingers-crossed-for-luck superficial hope to ...

hmfsli

•10 years ago

16 Replies

I lost my husband on April 5th after a 4 year battle with the horible, cruel disease that is PSP.

My beloved husband Malcolm who very sadly died at home with myself and my 3 daughters by his side. Unfortunately his passing wasnt peaceful or how we were...

My beloved husband Malcolm who very sadly died at home with myself and my 3 daug...

elizabeth57

•10 years ago

14 Replies

My dad died 3 weeks ago at home from 4 year long battle with PSP.

Can't believe my dad is gone, he was only 65 and suffered for so long. PSP is a evil disease which took everything from my dad, his speech, ability to swallow,...

Can't believe my dad is gone, he was only 65 and suffered for so long. PSP is a ...

maddie27

•10 years ago

8 Replies

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Hi Strelley Is there anyway of knowing what form of PSP someone has? Eg. PSP RS / PSP P could a neurologist know

Hidden

•10 years ago

19 Replies

¿Qué significa PSP?

gmunsot

•10 years ago

46 Replies

forced to move right after my husband's death

As if it weren't enough that my husband died on April 8th, 2014 from CBD, my mother passed in January, 2014 of Parkinsons, and my father suddenly in July,...

As if it weren't enough that my husband died on April 8th, 2014 from CBD, my mot...

dragonladynaps

•10 years ago

16 Replies

What type garment works best for a man who is barely mobile?

Cardigans instead of jumpers works best, what about trousers etc?

MaddyS

•10 years ago

15 Replies

What type garments work best when patient is barely mobile? (Woman)

jimandsharynp

•10 years ago

5 Replies

What helpful techniques work when using a Hoyer lift? I can work the lift but have problems getting sling in place.

jimandsharynp

•10 years ago

2 Replies

When patient is not mobile and can barely stand do you cloth them each day and if so what?

jimandsharynp

•10 years ago

6 Replies

Has anyone got experience with Botox for excessive salivation? It has been a suggestion as other things don't work well

Hidden

•10 years ago

5 Replies

My husband was diagnosed with CBD in 2011. He died 4/8/14. His first true symptoms were Gran Mal Seizures 12/31/09. Why so little time?

My husband had been followed for a couple of years following migraine headaches by a neurologist. In 2009 that neurologist turned him over to his partner who...

My husband had been followed for a couple of years following migraine headaches ...

dragonladynaps

•10 years ago

4 Replies

caregiver for my husband of 15 years who died of CBD on April 8, 2014, having been diagnosed only since 2011.

I was the caregiver for my husband until his death. He was first diagnosed with Lewy Body in 2010 and a year later with CBD. He also suffered from having...

I was the caregiver for my husband until his death. He was first diagnosed with...

dragonladynaps

•10 years ago

4 Replies

Has anyone used the expertise of a Neuro physiothapist? My son is convinced that it would help his dad with his rigid limbs and probably

His general health. Dorothy Thompson

dorothy-thompson

•10 years ago

12 Replies

My wonderful Father in Law passed away this morning

Sadly my father in law's battle with this terrible cruel disease finally ended this morning with his devoted wife Barbara holding his hand. He was a wonderful...

Sadly my father in law's battle with this terrible cruel disease finally ended t...

capsey31

•10 years ago

22 Replies

CBD Diagnosis

Hi everyone , Just wanted to introduce myself to you all. I was diagnosed with Parkinson Plus Syndrome in July 2013 .My consultant said it was either MSA PSP...

Hi everyone , Just wanted to introduce myself to you all. I was diagnosed with ...

CheekyChops1973

•10 years ago

20 Replies

My dad suffers PSP what kinds of social/physical activity or group is available? I hate seeing him deteriorate in his recliner chair daily

I want him to he able to engage in something and get involved. He is too young to let this get to him

I want him to he able to engage in something and get involved. He is too young t...

daughterinpain

•10 years ago

11 Replies

Naturopath, what is it and does it do any good?

Hi, I have read about Naturopath in some body's blog. Never heard of it! Anybody any experience of it and what can they do for my husband? I am presuming...

Hi, I have read about Naturopath in some body's blog. Never heard of it! Anybo...

Heady

•10 years ago

20 Replies

Is it common to have stomach problems with PSP? Not the bowel problems or UTI's, but stomach pain. My husband has had severe stomach pain.

He has a peg tube, but also can eat some pureed foods, yogurt and puddings. Had an upper GI done, it showed nothing wrong. The tube is fine, as I suspected. It...

He has a peg tube, but also can eat some pureed foods, yogurt and puddings. Had ...

laroux

•10 years ago

19 Replies

Refused CHC today for my FIL has anyone got any advise how I can appeal?

My Father in law has advanced PSP and can no longer do anything for himself. His wife is his main carer with the help of 2 calls a day to get him up washed...

My Father in law has advanced PSP and can no longer do anything for himself. His...

capsey31

•10 years ago

20 Replies

God's Will Be Done

Bill passed peacefully from this world this morning at 8:00. His labored breathing and his high fever slowly left him after only two and a half days. And now I...

Bill passed peacefully from this world this morning at 8:00. His labored breathi...

carolinesimmons

•10 years ago

28 Replies

Seen By Neurologist

Hi all I saw my neurologist last Wednesday - he was 2 hours late due to phone call to Govmnt about some drug but of course not one fro PSP he ordered an anti...

Hi all I saw my neurologist last Wednesday - he was 2 hours late due to phone ca...

marytea13

•10 years ago

9 Replies

Incredibly fast turn around!

This is particularly for NannaB or anyone it can help. On Good Friday my husband was stable and actually took communion from his Hospice Chaplain. Sunday was...

This is particularly for NannaB or anyone it can help. On Good Friday my husband...

carolinesimmons

•10 years ago

15 Replies

Hi everyone my husband was diagnosed with psp about 18 months ago he gets urine infections all the time and has to be hospitalised he has

A catheter also his arms and legs have gone rigid fingers are all curled in just seems to have gone so fast enjoy reading all aspects on this site makes me...

A catheter also his arms and legs have gone rigid fingers are all curled in jus...

Kris1983

•10 years ago

7 Replies

Hi every one just diagnosed on Easter Saturday got letter don't know what to do am I surppose to have special meds or stay on ones I have

Got nurse coming soon but advice needed now thankyou y the way 48 years old

Flakes12

•10 years ago

33 Replies

Activities

Hi, I work for a local charity and we visit people with sight loss. A gentleman I am due to visit next week has PSP and it has severely affected his sight. His...

Hi, I work for a local charity and we visit people with sight loss. A gentleman ...

forkeith

•10 years ago

8 Replies

Bad weekend

Very trying weekend with mum I know mum can't help it and it breaks my heart to see her like this refusing food and will only eat puddings, arms have gone...

Very trying weekend with mum I know mum can't help it and it breaks my heart to ...

blackcushion

•10 years ago

22 Replies

Eating poorly? Anyone had an issue of PSP patient not eating when swallowing is not a major problem, just small swallowing issue.

You cant force a person to eat so what do you do? Patient doesn't show signs of depression. Tough to figure out.

You cant force a person to eat so what do you do? Patient doesn't show signs of...

jimandsharynp

•10 years ago

19 Replies

Hi all,my dad passed away very peacefully this morning,we took him from the hospital away from the blood tests etc,

It was to distressing for him,there was nothing they could do,and pu him on the Liverpool pathway,he came home,and with help from the McMillan nurses,he died...

It was to distressing for him,there was nothing they could do,and pu him on the ...

Robin20

•10 years ago

16 Replies

Should I be concerned, my sister is now fully dependant and has started coughing when she eats(choking

nannygoon

•10 years ago

3 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for April 2014

Holding on to Hope

I lost my husband on April 5th after a 4 year battle with the horible, cruel disease that is PSP.

My dad died 3 weeks ago at home from 4 year long battle with PSP.

Hi Strelley Is there anyway of knowing what form of PSP someone has? Eg. PSP RS / PSP P could a neurologist know

¿Qué significa PSP?

forced to move right after my husband's death

What type garment works best for a man who is barely mobile?

What type garments work best when patient is barely mobile? (Woman)

What helpful techniques work when using a Hoyer lift? I can work the lift but have problems getting sling in place.

When patient is not mobile and can barely stand do you cloth them each day and if so what?

Has anyone got experience with Botox for excessive salivation? It has been a suggestion as other things don't work well

My husband was diagnosed with CBD in 2011. He died 4/8/14. His first true symptoms were Gran Mal Seizures 12/31/09. Why so little time?

caregiver for my husband of 15 years who died of CBD on April 8, 2014, having been diagnosed only since 2011.

Has anyone used the expertise of a Neuro physiothapist? My son is convinced that it would help his dad with his rigid limbs and probably

My wonderful Father in Law passed away this morning

CBD Diagnosis

My dad suffers PSP what kinds of social/physical activity or group is available? I hate seeing him deteriorate in his recliner chair daily

Naturopath, what is it and does it do any good?

Is it common to have stomach problems with PSP? Not the bowel problems or UTI's, but stomach pain. My husband has had severe stomach pain.

Refused CHC today for my FIL has anyone got any advise how I can appeal?

God's Will Be Done

Seen By Neurologist

Incredibly fast turn around!

Hi everyone my husband was diagnosed with psp about 18 months ago he gets urine infections all the time and has to be hospitalised he has

Hi every one just diagnosed on Easter Saturday got letter don't know what to do am I surppose to have special meds or stay on ones I have

Activities

Bad weekend

Eating poorly? Anyone had an issue of PSP patient not eating when swallowing is not a major problem, just small swallowing issue.

Hi all,my dad passed away very peacefully this morning,we took him from the hospital away from the blood tests etc,

Should I be concerned, my sister is now fully dependant and has started coughing when she eats(choking

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive