PSP disease: Hello everyone. I am new to the... - PSP Association

PSP Association

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PSP disease

roxiemcgregor profile image
20 Replies

Hello everyone. I am new to the site. I am a support person for my room mate who has PSP. I have taken comfort in reading so many posts. It is so helpful to know that many of you are experiencing the same things I am as this disease progresses.

Best

Roxie

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roxiemcgregor profile image
roxiemcgregor
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20 Replies
abirke profile image
abirke

Greetings from America, Roxie. A support person for a room mate....wow that's some roommate! It's good that they have you and it's good you found this site it will help in so many ways.

When was your roommate diagnosed? If you have any questions , ideas , answers, or just want to scream we are hear for you. Your roommate may also like to hang out here so be sure and tell them about this site.

Again welcome and may your journey with PSP lead you to a deeper and richer perspective on life.

AVB

Peace I leave with you, my peace I give to you; not as the world gives, give I to you. Let not your heart be troubled, neither let it be afraid. John 14:27

For God hath not given us the spirit of fear; but of power , and of love , and of sound mind... II Timothy 1:7

Noella21 profile image
Noella21 in reply to abirke

Welcome to this site. You are an amazing roomate. You may be our first. Welcome to our site . We are glad you found us. We are better carers together. We sometimes may cry ,celebrate and rant and always support each other no matter what happens. You are a special person and we are here for both of you.

abirke profile image
abirke in reply to Noella21

Thanks Noella! But yah Roxie is an amazing roommate...And we are better carers together...I like that that should be our motto...Better Carers Together!

:)

AVB

roxiemcgregor profile image
roxiemcgregor in reply to Noella21

Thanks its great to know that I am not alone on this journey.

in reply to roxiemcgregor

It can be a very long journey and a hard one but you have always someone to get everything off your chest. Love to all on this amazing website Nette

roxiemcgregor profile image
roxiemcgregor in reply to abirke

Thanks for your reply. My roomie not well enough to be on here. I have told him about it. I'm looking for insight on staging of this disease as I understand there is not staging so hard to say where he is at with the progression.

abirke profile image
abirke in reply to roxiemcgregor

No staging is not clear cut enough to have them. Sometimes the patient may even rebound a bit and we are so happy. But as a rule 6 to 9 years after diagnosis....7 to 11 years at first signs of something amiss!

Tell me whats going on in your picture? My weak old eyes cannot see these tiny little pics.

:)

AVB

roxiemcgregor profile image
roxiemcgregor in reply to abirke

Picture of my dogs when we were out for a hike in the forest. I had two black labs , they have passed away in the last year 18 months. I have one dog who is part husky and Rottweiler. She is a very friendly lovable dog.

My roomie was diagnosed in 2010

abirke profile image
abirke in reply to roxiemcgregor

I had a beautiful picture of my husband and dog on a hike.....I lost the picture when I changed phones....

what are your roomies symptoms? Does he have a name or a nickname we could call him? Alot of people go by their first initial....My husbands name is B for Bruce....

I will relook at your pics with new meaning now! thanks

AVB

roxiemcgregor profile image
roxiemcgregor in reply to abirke

My Roomie Is Blake.

abirke profile image
abirke in reply to roxiemcgregor

Another "B"

BindiLeech profile image
BindiLeech in reply to abirke

as am I Anne!!!! XX

york profile image
york

Welcome to the site and we are here for you and your room mate. If you have any worries or just need us to listen don't hesitate to ask there is always someone to give you a hug an ear or advice.

roxiemcgregor profile image
roxiemcgregor in reply to york

Thanks so much.

cabbagecottage profile image
cabbagecottage

Well done you for caring

D0ttieL0ttie profile image
D0ttieL0ttie

Hi Roxie

Where are you based? Whenever you or your room mate need to post be assured there will be one of here to respond.

roxiemcgregor profile image
roxiemcgregor in reply to D0ttieL0ttie

Thanks. We live in Sudbury, Ontario

D0ttieL0ttie profile image
D0ttieL0ttie in reply to roxiemcgregor

We are in the UK, but we are all here for each other world wide xx

Noella21 profile image
Noella21 in reply to roxiemcgregor

We are in Alberta . We are just a text away. A lot of our issues are similar word wide. Not enough help that is easy to access. Everything is a struggle. There is encouragement, support and good advice. Hugs

Duffers profile image
Duffers

Welcome rosie from harrow, London. Great people on this site. No question too big, small or awkward. Good luck. Marie

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