Posts - PSP Association | HealthUnlocked

PSP Association

9,266 members • 11,356 posts

All posts for May 2014

My husband is going through a very difficult stage at the moment due to swallowing difficulties and constant coughing. Last night was

particularly bad for him a he was coughing up something which I can only describe as white foamy phlegm. He was very uncomfortable and disturbed all night...

particularly bad for him a he was coughing up something which I can only describ...

dorothy-thompson

•10 years ago

6 Replies

What do you do when your PSP family member can't call out loud enough for you to hear them from another room?

Here's what I found worked for my dear wife Sharyn and I. First I placed a bell (type hotel desks have) by her bed and chair. That worked for a very short...

Here's what I found worked for my dear wife Sharyn and I. First I placed a bell...

jimandsharynp

•10 years ago

7 Replies

Is there anything to be thankful for in PSP?

The answer is yes. Example: My dear wife Sharyn never acted out in anger which is a common thing in PSP. She never had uncontrollable laughing which is...

The answer is yes. Example: My dear wife Sharyn never acted out in anger which...

jimandsharynp

•10 years ago

23 Replies

Want to take advantage of all our features? Just log in!

online party for sunday 25 may 2014

are you up for an online party sunday 25 may at 7pm UK time ; 1 PM USA eastern time and i am not sure what item it will eb in the west of the uSA = Another 6...

are you up for an online party sunday 25 may at 7pm UK time ; 1 PM USA eastern ...

jillannf6

•10 years ago

6 Replies

My dad was diagnosed with PSP a little over 2 years ago after 2 major falls down the stairs at my parents home.

He had many broken bones, contracted MRSA but fought through it all and currently resides in a nursing home. I've read on many of the threads concerning the...

He had many broken bones, contracted MRSA but fought through it all and currentl...

Hidden

•10 years ago

5 Replies

does anybody no why they tell you its psp then move you on to some one else they say it may be that my husband was diagnose with this

but he has gone worse all the symtoms are there especually the falls im at my witts end it seems like they dont care is anybody else experiancing this

but he has gone worse all the symtoms are there especually the falls im at my wi...

laila123

•10 years ago

42 Replies

How dangerous is sedation or general anesthetic?

My guy is set to have a procedure that it usually done under anesthesia, but can be done, with some discomfort of course, with local anesthetic only. I have...

My guy is set to have a procedure that it usually done under anesthesia, but can...

easterncedar

•10 years ago

15 Replies

Medication

My husband is taking Aricept, I don't know if it is making him more drowsy, he sleeps most of the day. Has anyone tried stopping it and if so any improvements?

My husband is taking Aricept, I don't know if it is making him more drowsy, he s...

Pippalina

•10 years ago

6 Replies

My mum June ( shown in picture) has had Psp for 6 years she can not walk talk eat or drink . Lately she has developed fluid in her one hand

( right side ) and both feet ! Can anyone tell me why ? Thankyou everyone on here for your posts which I find invaluable x

( right side ) and both feet ! Can anyone tell me why ? Thankyou everyone on her...

elizalou1710

•10 years ago

10 Replies

Has anyone got experience of a stair-lift?

Hidden

•10 years ago

15 Replies

Nottingham Support Group

I went to the Nottingham Support Group this morning and it was brilliant to join with other people in a way I've never really done before. I would encourage...

I went to the Nottingham Support Group this morning and it was brilliant to join...

HannahDaykin

•10 years ago

4 Replies

We cannot straighten my father, any advice, he is bent double in his wheelchair

My father is in the latter stages of this dreadful illness (PSP). Of late when he is in his wheelchair, he is bent over, his head touching his knees, and we...

My father is in the latter stages of this dreadful illness (PSP). Of late when h...

millicenthatton

•10 years ago

6 Replies

Please can a Tick Box be added to all questions and comments... That way we can show support to each other. As I read but am afraid

To put my true feelings down incase they might upset someone... Just a tick would show we are not alone on this horrid journey... valeriewilsin78@yahoo.co.uk

To put my true feelings down incase they might upset someone... Just a tick woul...

Brighteyesxxx

•10 years ago

13 Replies

Some PSP symptoms compared to a child......

Recently on this forum, a few have mentioned how caring for their loved one with PSP is somewhat like caring for a child. I thought I would make a quick list...

Recently on this forum, a few have mentioned how caring for their loved one with...

Hidden

•10 years ago

26 Replies

Geoff has died!

My darling Geoff died 12th April. He contracted pneumonia on the Monday before and fell asleep. Thank god his suffering is over and I send love and wish...

My darling Geoff died 12th April. He contracted pneumonia on the Monday before...

Hidden

•10 years ago

17 Replies

Death Certificates

I know many have recently lost a loved one to PSP or CBD, so I apologise for any possible insensitivity on my part as I discuss this subject. Raising awarenss...

I know many have recently lost a loved one to PSP or CBD, so I apologise for any...

Hidden

•10 years ago

13 Replies

PSP & Manchester 10k and the Kelly clan

My son and daughter, plus brother and nephews and nieces are going to running the manchester 10k in aid of PSP, if you would like to support them to raise...

My son and daughter, plus brother and nephews and nieces are going to running th...

Thekelly5

•10 years ago

1 Reply

The fight begins into why my father in law was refused CHC

It will be 2 weeks tomorrow since my father in law passed away from this cruellest of diseases. We had a beautiful service for him on Thursday and I vowed to...

It will be 2 weeks tomorrow since my father in law passed away from this cruelle...

capsey31

•10 years ago

31 Replies

Considering PEG feeding?

Here's an audio recording from the CurePSP.org site that will answer many many questions about PEG feeding including how it's done and the Pro and Con of a...

Here's an audio recording from the CurePSP.org site that will answer many many q...

jimandsharynp

•10 years ago

6 Replies

Not swinging from the chandler yet!!!

Hi, just put S on Coconut oil. One tablespoon a day, tried it first with his breakfast cereal, now mixing in a coconut yoghurt at lunch time. It's been three...

Hi, just put S on Coconut oil. One tablespoon a day, tried it first with his br...

Heady

•10 years ago

17 Replies

Does anyone have any imput/comment on this? As everyone says, diagnosis doesn't change anything, but it helps to structure the future.

My husband was diagnosed with Agent Orange induced Parkinson's in 2009. In December 2013, the neuro said that she felt there might be some conmorbitant PSP...

My husband was diagnosed with Agent Orange induced Parkinson's in 2009. In Decem...

mommajo

•10 years ago

8 Replies

Walk of a Drunk Sailor?

Does anyone recall their psp gait as being like that of a drunk or was it more like a sudden collapse and fall. In other words did they tend to stay upright...

Does anyone recall their psp gait as being like that of a drunk or was it more l...

mcfly

•10 years ago

16 Replies

Frustrated! No one knows for sure what my husband has.

For the last 3 years my husband has been told first that he had "left sides Parkinson's", then it was "PSP", then "CBD", those all from UNMC in Omaha, now we...

For the last 3 years my husband has been told first that he had "left sides Park...

Hidden

•10 years ago

11 Replies

Is this the final stage I wonder

Mum declined so much in days sleeps alot terrible thrush in her mouth but keeps spitting medicine out I tell mum it won't clear up but still spits it out eats...

Mum declined so much in days sleeps alot terrible thrush in her mouth but keeps ...

blackcushion

•10 years ago

3 Replies

The struggle is over, the fight was difficult the warrior strong.

My heart is broken. My dear wife Sharyn passed on to a much better place at 8:52pm yesterday. After hours of difficult breathing her breathing returned to...

My heart is broken. My dear wife Sharyn passed on to a much better place at 8:5...

jimandsharynp

•10 years ago

62 Replies

New clinical trial pyruvate, creatine, niacinamide

If any one is in the trial, pls share your first improvements ....

clairev

•10 years ago

4 Replies

Co emzyme Q10 , Lithium, alpha lipoic acid, L carnitine

anyone has been taking these and noted some improvements?

clairev

•10 years ago

5 Replies

My saliva is getting thicker and I have developed a cough. Is this the prelude to more choking? I have had PSP for 4 years and I am 69.

LyndaEllis

•10 years ago

11 Replies

Peace at Last

2 days removed from my father's passing. We have all been over at the house as we prepare are for his services. I went to the rear of the house by myself, into...

2 days removed from my father's passing. We have all been over at the house as w...

jwalls

•10 years ago

17 Replies

Final stage and waiting

Just a brief update. My dear wife Sharyn has taken a downward step. Hospice says her body is shutting down getting ready for death. She is not in any pain but...

Just a brief update. My dear wife Sharyn has taken a downward step. Hospice says...

jimandsharynp

•10 years ago

38 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for May 2014

My husband is going through a very difficult stage at the moment due to swallowing difficulties and constant coughing. Last night was

What do you do when your PSP family member can't call out loud enough for you to hear them from another room?

Is there anything to be thankful for in PSP?

online party for sunday 25 may 2014

My dad was diagnosed with PSP a little over 2 years ago after 2 major falls down the stairs at my parents home.

does anybody no why they tell you its psp then move you on to some one else they say it may be that my husband was diagnose with this

How dangerous is sedation or general anesthetic?

Medication

My mum June ( shown in picture) has had Psp for 6 years she can not walk talk eat or drink . Lately she has developed fluid in her one hand

Has anyone got experience of a stair-lift?

Nottingham Support Group

We cannot straighten my father, any advice, he is bent double in his wheelchair

Please can a Tick Box be added to all questions and comments... That way we can show support to each other. As I read but am afraid

Some PSP symptoms compared to a child......

Geoff has died!

Death Certificates

PSP & Manchester 10k and the Kelly clan

The fight begins into why my father in law was refused CHC

Considering PEG feeding?

Not swinging from the chandler yet!!!

Does anyone have any imput/comment on this? As everyone says, diagnosis doesn't change anything, but it helps to structure the future.

Walk of a Drunk Sailor?

Frustrated! No one knows for sure what my husband has.

Is this the final stage I wonder

The struggle is over, the fight was difficult the warrior strong.

New clinical trial pyruvate, creatine, niacinamide

Co emzyme Q10 , Lithium, alpha lipoic acid, L carnitine

My saliva is getting thicker and I have developed a cough. Is this the prelude to more choking? I have had PSP for 4 years and I am 69.

Peace at Last

Final stage and waiting

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive