Just found out: Thank you all for this very... - PSP Association

PSP Association

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Just found out

Daruka profile image

Thank you all for this very special association. I am is OZ in the country and have just been diagnosed. Feel like a rabbit with a car light stunning me. Or as we say down here a stunned mullet. It's a scary time bit I'm going to do my best to keep my self positive

Chris from OZ

23 Replies

Hi Chris from Across the Ditch! I live in NZ. You must be pleased you are 'out in the country' with Covid gathering momentum in the big cities! Hope you and your family are in a safe place.Welcome to this haven! Am so glad you found it. Sorry for your diagnosis, but this is definitely a lifeline for you, and you will not be alone. You can rant here and we all understand the frustration, anger, fear and bewilderment you face!

Often, that frustration comes from doctors who have never heard of PSP CBD or any similar diseases because they are so rare. Download the guidelines on PSP that are available here and they can learn from them.

You will find the posts of great help, the people on here are so supportive. There are others here who have PSP and similar brain diseases and they also post for as long as they can.

There have been posts from OZ in the past so you may find help from them that are relevant to OZ. Even so, a great deal of the advice and knowledge here is useful no matter which country you live in.

Get someone in your support group to also sign up, because there is also a lot of help and support for carers too!

When you are ready, add a little more about yourself so we can get to know you better!

Big hug!

Jen XXX

Daruka profile image
Daruka in reply to honjen43

Thank you so much, I'm so glad to have found this site. In a way it was a relief to get a diagnosis as I have had symptoms for a couple of years. Just need to get my head around what I need to do

honjen43 profile image
honjen43 in reply to Daruka

It's just like any other life limiting diagnosis when you step back.Make a will, get your affairs in order, make a bucket list - and get on with enjoying life. Push yourself to the edge of your abilities. Keep fit and do plenty of exercise. Tell your family you love them - no matter what is in the future!

Hugs

Jen xx

Daruka profile image
Daruka in reply to honjen43

Thank you so very much

tasha1944 profile image
tasha1944 in reply to Daruka

We are also in Oz where they don’t seem to know very much about PSP. I have learnt so much from this site. We are near Coffs Harbour, NSW. Where are you?

Daruka profile image
Daruka in reply to tasha1944

Hi we are in Tamworth. No one seems to know much here except my neuro. I'm seeing an amazing exercise physiologist who in just two weeks has enabled me to feel better a mild improvement in balance

tasha1944 profile image
tasha1944 in reply to Daruka

Yes balance exercises are so important. My husband has had PSP for about six years but was treated for Parkinson’s for four. He is having lots of falls and I am looking into getting something to help him get up off the floor or ground.

Daruka profile image
Daruka in reply to tasha1944

I'm finding the exercise physiologist great.i feel much safer

Dear Daruka

Welcome - I echo Jen’s suggestions . This is a tough adjustment to make - getting your head around this diagnosis. But this community will be here for you and their support and friendship invaluable. No question is to daft or trivial and we all learn from each other.

Love Tippy

Thanks so much, I have a great family and friends to support, it's just " what the...."

Hi Chris. I'm pleased that you found this site. I'm also from regional OZ. Ballarat, Vic to be precise. My husband was eventually diagnosed with PSP in 2016 and passed away in April 2019. I didn't manage to link up with any other PSP patients here, so found this on line group really helpful and informative. Like many others I still read posts and have occasionally responded to peoples posts. It is helpful to be able to ask questions and even sometimes to vent, as PSP is relentless and members of this group understand it so much better than doctors. It is good to know that you have supportive family and friends as it can and no doubt will be a challenging road you walk. Chris may I ask if you are a Christopher or a Christine? Or maybe something else? Thoughts, prayers and hugs for you.

Lynne

Daruka profile image
Daruka in reply to nayook

Hi Lyn, its Christine!!. I guess Im in denial mode at the moment. Thanks for your comments.

I echo what everyone else has already said. This group was a huge support to me on my Mum's journey. I hope you & your family find it as useful. Keep up the positive attitude, it makes a difference. :)

Hello Aussie Christine. I am also a Aussie. This is only the second time I have seen someone post from Australia.

I joined this group about twelve months ago when I had become so frustrated with the lack of knowledge and support for PSP in Australia.

This group of wonderful people have been so helpful to our family. I still read the posts as my dear mother, who had PSP passed away two months ago.

We live in country Victoria, unfortunately most health professionals had not even heard of PSP.

What part of Australia do you live in???

You will find a lot of support and knowledge on this site.

Take care and I am sending you a huge hug.

Carolyn

easterncedar profile image
easterncedar in reply to Goroos

Peterjones (his user name, not his real name) was a wonderful member of this community for several years. He was from Queensland. If you can, check the archives for his posts. He was very funny and very dear. If you look for his "replies" rather than his "posts" you will find a treasury of his writing. So many good stories.

Sorry you had to find this group, but, you'll glad that you did. I have PSP as well - 8 years now. I know from experience just how difficult it is to wrap your head around the diagnosis. The sooner you come to accept the dx - the better. Three pieces of advice. 1. Stay positive, there is research into a treatments-cure through clinical trials currently underway. 2. Exercise, Exercise, Exercise 3. Hope.

Get all your legal affairs in order and of the way. Enjoy your life while you can, changes will come around... and not for the better. Make a bucket list, but be careful it can be pricey. Learn all that you can about the disease, become the expert, 95% on the medical field haven't even of PSP. Advocate and raise PSP-CBD awareness, these will give purpose. Become the Warrior. Read up on the older posts, there are volumes of experience already shared, and some still to be written. Keep On, keeping on.

Tim x

Daruka profile image
Daruka in reply to daddyt

Thank you,

Hi Daruka!

I'm sorry PSP/CBD/ etc. has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Hi Daruka so sorry about your diagnosis however no two people are alike and when you read all about it you probably won’t get everything that you read about my husband was diagnosed in 2013 he’s had PSP since and before then We’re in Oz too near Perth but originally from UK

Hugs to you

Hi Chris! My wife was diagnosed with PSP in early 2018. My advice would be to get as much physical and social therapy as possible. Guided physical therapy can help slow the progression as can social therapy with activities and games that keep the mind active. Do you have access to a neurologist who can monitor your progression, prescribe medication, and inform you of local resources (e.g., Parkison's Support Group) you may be able to access?

This is a tough diagnosis and you will need all the help you can get from your immediate family and friends. Take it one day at a time. However, get your will, power of attorney, "personal directives" sorted out now. Don't wait. Finally, do all the things you wanted to do but never got around to, and tell people who have been a big part of your life, how much they mean to you.

Daruka profile image
Daruka in reply to Dosco

Thank you

Dear Christine, I am so pleased that you have had such a lot of welcoming and good advice given to you as a result of your post. You are now part of an International family that no one wants to be part of, but which is so very very knowledgeable and supportive. I remember one night in the UK where I was getting no where with our phone emergency service, that I asked a question and received a reply almost immediately from Canada. It was like a lifeline.Big hugs and good luck. AliBee xx

I am so thankful, everyone one now looks at me as I'm going to break. It's great to know other people who understand

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