Posts - PSP Association | HealthUnlocked

PSP Association

9,604 members•11,541 posts

All posts for July 2014

Harry Thompson 8 May 1940 - 13 July 2014

The end was peaceful and calm with his family at his bedside. I am so thankful that he is at last released from this cruel and unforgiving disease. For all...

The end was peaceful and calm with his family at his bedside. I am so thankful ...

dorothy-thompson

•10 years ago

37 Replies

Confused

My husband has just been diagnoses with PSP. How do I approach him about this diagnosis that is going to affect both if us?

My husband has just been diagnoses with PSP. How do I approach him about this d...

Marion1946

•10 years ago

15 Replies

Dentist / teeth

Hubby needs a tooth (maybe more than one) removed. At the moment he is not able to open his mouth more than about 1cm. Has anyone had experience with this?...

Hubby needs a tooth (maybe more than one) removed. At the moment he is not able ...

MaddyS

•10 years ago

11 Replies

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

I feel levadopa is not working for me and making me worse. If I ask to come off it will I have to go into hospital?. I have probable cbd.

Hi everybody . I have heard from a lot of you that levadopa has not worked for you and I feel this is happening to me . I have had nearly 24 hours off it today...

Hi everybody . I have heard from a lot of you that levadopa has not worked for y...

CheekyChops1973

•10 years ago

20 Replies

Birthday greetings

Hi Alana, happy 50th birthday to you. I hope you can make some time to do something really special for yourself today, despite all the obstacles. Thinking of...

Hi Alana, happy 50th birthday to you. I hope you can make some time to do somet...

Hidden

•10 years ago

13 Replies

Someone needs our support!

I don't know if I am meant to do this, but hey ho!!! A lady in Australia, who we all know is 50 today!!! She is really having a hard time and feels very much...

I don't know if I am meant to do this, but hey ho!!! A lady in Australia, who w...

Heady

•10 years ago

19 Replies

When will this end my dear lord?

I am totally frustrated at how much this disease can make someone suffer! My mother has had PSP for eight years and still there is no respite and now her...

I am totally frustrated at how much this disease can make someone suffer! My mot...

ritak

•10 years ago

25 Replies

My brother is 59 diagnosed with PSP 2012. Complaining of leg being dead. Is this the start of the walking problems?

horserace34

•10 years ago

8 Replies

I would like to know what stage of PSP I am in. My doctor doesn't say anything about that. I diagnosed with PSP three years but have had

symptoms for nine years. My speech has gotten really hard to understand. I can't write and I can barely walk. Walking slow, balance is poor, lots of falls. Use...

symptoms for nine years. My speech has gotten really hard to understand. I can't...

patandlinda

•10 years ago

10 Replies

End stage?

I think maybe my husband is coming to the end of his life. He is very poorly ,unable to eat and drink and unresponsive.I thought I had shed all the tears and...

I think maybe my husband is coming to the end of his life. He is very poorly ,un...

Hidden

•10 years ago

22 Replies

Wondered if anyone with cbd , msa or PSP has also had melanoma.?

I had melanoma up to about five years before my cbd diagnosis. Anyone had similar experiences ?

I had melanoma up to about five years before my cbd diagnosis. Anyone had simila...

CheekyChops1973

•10 years ago

6 Replies

MY QUESTION IS THIS : IF YOU HAVE PAIN WHAT DOES IT FEEL LIKE ?

MY PAIN FEELS LIKE MY HEAD IS SUPPER HEAVY AND IT WILL GO DIRECTLY TO THE CENTER OF THE EARTH ! ALONG WITH MY OTHER PAINS THAT IS ABOUT THE WORST.

MY PAIN FEELS LIKE MY HEAD IS SUPPER HEAVY AND IT WILL GO DIRECTLY TO THE CENTER...

edkor

•10 years ago

4 Replies

Has anyone tried Vitalstim for dysphagia?

I recently read a Patricia Richardson interview where she mentioned Vitalstim instead of a PEG tube. Has anyone tried it? Christine http://www.vitalstim.com/

I recently read a Patricia Richardson interview where she mentioned Vitalstim in...

Christine47

•10 years ago

2 Replies

husband with cbd diagnosis

i have been reading the blogs and questions. wonderful resource. so glad to have found this site. we are in the united states.....seeing a neurologist in...

i have been reading the blogs and questions. wonderful resource. so glad to ha...

dragon1840

•10 years ago

8 Replies

do any caregivers witness a greater problem with your loved one after someone comes to visit,Madeline is in stage 4,no speech etc etc.Rollie

nomansland

•10 years ago

30 Replies

My husband has parkinsonism psp. How do you know what stage they are in? He is having sinus stinging, and a doctor put him on Glycopyrrolate

mthteach

•10 years ago

20 Replies

Hi , has anyone experienced dyskinesia's while on stalevo or levodopa in general ?:)been on levadopa for a year now .

I'm almost sure I am having these daily in my foot and is making my symptoms worse then they should do ! Not sure if stalevo is really working for me but been...

I'm almost sure I am having these daily in my foot and is making my symptoms wor...

CheekyChops1973

•10 years ago

9 Replies

Is a Damaged trachea (windpipe) associated with psp, msa or Parkinson's My mother has had a near death experience and will power has saved h

My mother went into hospital with breathing difficulties in tue and we were not worried. However her condition deteriorated so much so that the doctors asked...

My mother went into hospital with breathing difficulties in tue and we were not ...

YipYapStaam

•10 years ago

7 Replies

Mum has PSP and is stuck in hospital, what options do I have, regarding hospice and care homes? Her needs are too high for all care homes!

Hi, my mum has very advanced PSP and has been in hospital for over 4 months and has nowhere to go now. There is no reason for her to be there. She went in for...

Hi, my mum has very advanced PSP and has been in hospital for over 4 months and ...

She_Is

•10 years ago

5 Replies

Polineuropathy

Is someone knows about the polinuropathy join, axonal and diesmilizante (I can not find this word in English) This condition affect nervous and muscles. Thank...

Is someone knows about the polinuropathy join, axonal and diesmilizante (I can n...

gmunsot

•10 years ago

14 Replies

Getting used to the new normal

"Constant change is here to stay" they say and, heaven knows, that's something those who have PSP and their families are more than a little aware of. Every...

"Constant change is here to stay" they say and, heaven knows, that's something t...

hmfsli

•10 years ago

19 Replies

I am applying for CHC for my husband and we are at the second stage. A "team of professionals" will be coming to make an assessment.

I know in my heart we will be unsuccessful but has anyone got any advice/ideas/experiences that I can use to strengthen our claim?

I know in my heart we will be unsuccessful but has anyone got any advice/ideas/e...

denmob

•10 years ago

28 Replies

A Frustrated Carer!

I sent my wife to a respite centre for a week. She had previously attended this centre and "enjoyed" it, and I had a measure of confidence in its standards....

I sent my wife to a respite centre for a week. She had previously attended this ...

Hidden

•10 years ago

37 Replies

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Posts - PSP Association | HealthUnlocked

PSP Association

All posts for July 2014

Harry Thompson 8 May 1940 - 13 July 2014

Confused

Dentist / teeth

I feel levadopa is not working for me and making me worse. If I ask to come off it will I have to go into hospital?. I have probable cbd.

Birthday greetings

Someone needs our support!

When will this end my dear lord?

My brother is 59 diagnosed with PSP 2012. Complaining of leg being dead. Is this the start of the walking problems?

I would like to know what stage of PSP I am in. My doctor doesn't say anything about that. I diagnosed with PSP three years but have had

End stage?

Wondered if anyone with cbd , msa or PSP has also had melanoma.?

MY QUESTION IS THIS : IF YOU HAVE PAIN WHAT DOES IT FEEL LIKE ?

Has anyone tried Vitalstim for dysphagia?

husband with cbd diagnosis

do any caregivers witness a greater problem with your loved one after someone comes to visit,Madeline is in stage 4,no speech etc etc.Rollie

My husband has parkinsonism psp. How do you know what stage they are in? He is having sinus stinging, and a doctor put him on Glycopyrrolate

Hi , has anyone experienced dyskinesia's while on stalevo or levodopa in general ?:)been on levadopa for a year now .

Is a Damaged trachea (windpipe) associated with psp, msa or Parkinson's My mother has had a near death experience and will power has saved h

Mum has PSP and is stuck in hospital, what options do I have, regarding hospice and care homes? Her needs are too high for all care homes!

Polineuropathy

Getting used to the new normal

I am applying for CHC for my husband and we are at the second stage. A "team of professionals" will be coming to make an assessment.

A Frustrated Carer!

Search posts

Latest poll

What are your main concerns as a carer?

Topics

Archive