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PSP Association
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PSP care Philippines

Hi everyone my name is Jonathan Torreon I'm from Philippines, I am taking care of my mother who was diagnosed with PSP last 2016. Here in my country it is really difficult for PSP patient as there are no community or support group for PSP, so I am here hoping to learn more about PSP and also to know about your experiences while taking care of your love once. I know it is really tough for the patient and also for the people who take good care of them but life goes on and lets just treasure every moment being with them. God Bless us all.

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Hello Jonathan;

So sorry to hear about your Mom's diagnosis. Has she been ill for long? You will find a lot of great information and very caring and supportive people here for you. Do ask any question you want, and use the search window on the upper right hand corner of the page to look up previous posts about problems or questions. There is information going back at least 6 years here, and it is valuable to read!

You are not alone - Welcome to the family here :-)

Anne G.

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hi anne, thank you for the message. She was diagnosed 2 years ago. My dad is also taking care of my mom.

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Welcome, Jonathan.

You'll find plenty of support here.

Do you have help caring for your mother ?

Jean x

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Hi Jonathan, Welcome!

I see your mother has been diagnosed with PSP. That in itself is a help, that there is a doctor there who understands what PSP is!

You have found in this site a great source of information, advice and sympathy, all of which you will need as time goes on. Even your doctor may find it helpful.

Gather your family together and work out how best to help your mum. You may not have access to all the equipment available in bigger countries, but you will find ways to make her comfortable so that she can enjoy her life while that is possible. If you are in the city, that maybe easier.

Think possitively and practically! Use this site to think forward and plan that way forward. Being forewarned is to be forearmed!

Keep in touch.

Hugs

Jen xxx

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Jonathan welcome. Nobody wants to be a member if this site but you will get a lot of help and advice from everyone. Not to mention support when things get bad as sadly they will. The people on here are wonderful.

When my husband was in hospital the last time, one of the nurses who was so nice came from the Philippines. I was always glad to see him as he was very kind.

You are very good to care for your Mother. If you need help advice or just company someone is always here. People here from the UK, USA, Canada, Ireland, South Africa, India, Australia and now The Philippines. I am sure I have missed somewhere. Sorry for whoever I have missed out! So there is usually someone online Jonathan.

Marie x

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New Zealand!

Hugs!

Jen xxx

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Jen

How could I forget? I have never been to New Zealand but used to work with someone who has gone back home. I also have friends who have a son living there! So I won't forget again...promise!

Marie x

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Thank you for the message Marie. God Bless

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Welcome to the best site ever, find out more here than from your doctors x

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Malaysia here

Angeline

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Angeline you have been too quiet that's why I forgot Malaysia! 😕 How are you keeping? Are you coping alright?

Hugs to you.

Marie x

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It has been a physical and emotional roller-coaster ride from day 1. Since diagnosis by 'The' neurologist in town we were basically left to deal with it on our own. Only a few here ever heard of PSP. We have had to transfer mum from Kota Kinabalu to Kuala Lumpur where she is now in the care an Extended Care Hospital where she has been for a year now. Diagnosed in early 2013 we are in the 6th year now.Its been heart-breaking.

Glad to know that we are not alone in this struggle and grateful to be able to learn from the others in this forum.

Tq and GBU

Angeline

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Sorry to learn of your Mom's diagnosis. In my area in Missouri most doctors have never heard of this disease. I learned so much from the experience of other's in this group. Everyone is here to help in anyway. God Bless you and your Mom.

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Welcome, Jonathan🙂How wonderful you are able to care for your mother ~ I care for my husband at home. We are managing OK. I need to walk with him even with the walker at all times. I can get him in the car. He enjoys his monthly retirees meetings with his Plumbers Union and we are still managing to get into the grocery store - It is not easy, but, we do it. He can drive the 'Amigo' carts. I count how many times he bumps into the counters to gauge his progression and Wish he does not lose this pleasure.

Is your mother walking? How are you handling your days? Alicia

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