PSP Association
5,167 members7,172 posts

Hello from Australia...Kim

Hi everyone

I joined this site 2 months ago and have been reading everyday

It is heartbreaking. I have been with love of my life for almost 40 years.We have 3 adult daughters and 1 beautiful grandson. We lived in the same home in Sydney for almost 40 years.

Approximately 2 years ago my energetic hard working hubby announced that we were selling and moving out of Sydney cos he could not work or keep up with maintenance of our very large home.

We sold and while the sale was going thru my middle daughter announced that she was having identical twins. We had sold and could not turn back so we moved 1.5 hours north of Sydney

My daughter went in to early labour at 25 weeks. 2 tiny little boys were born. 770grams and 558 grams. The little one Ethan passed 25 days after he was born. A tragic time for our family. Aiden is now almost 2

Around that time we noticed a big change in Barry (hubby) 63 years old

His eyes seemed vague and he walked slowly. We saw a Neurologist that diagnosed him with stroke and dementure. Barrys memory was perfect so I questioed it. An MRI showed calcification and he appeared to have had ashimic attacks

We went back to the Neuro and each time Baz would be worse..slower, speech slurring and his blank blue eyes

The neuro then sent us to a Geriologist and as soon as Baz walked in she started firing questions at him and doing various tests on him

Every test was a yes etc. She announced that Baz had PSP. This was prior to Xmas.

Baz is now very rigid on his right side and very sore in the right shoulder. He has had numerous falls and he is extremely emotional..incontinent, constipated and coughs every meal or drink

I dont know anyone in this area and have found it very hard to cope. We now have an OT and a speech pathologist who visits

I am not too sure how advanced Barry is but I want to make the rest of his life full of love and lots of Happy moments

We just came home from a 2 week vacation in Sth Africa (his dream). It was hard but we had lots of help

I hope I haven't babbled on too much. I just felt it was time to say Hi ❤

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Hi Allan924,

Welcome to the site but I’m sorry you have had to join us. You have had a traumatic couple of years. You are doing the right thing by trying to fulfil your husband’s dreams. I did the same and made many happy memories despite the horrors of PSP.

A few weeks ago another carer/ wife joined the site and asked if anyone lived near her. She mentioned Newcastle and I think she said she lived near the lake south of Newcastle. I took notice as I was there on holiday from the U.K. at Christmas. She said she has registered to be on the “people near me” page. If you click home at the top of this page and look to the right you should see the “people near me” box. I can’t remember how we registered and if I look now, I’ll lose what I have written but it may be a good idea and helpful to know someone near you. I found folk near me and have made good friends who have been, or are going through what I did as a full time carer.

Very best wishes

Nanna B

XxxX

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Thankyou NannaB I will do that. Newcastle is only 45 minutes from here

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👍🏻 XxxX

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Hey Nanna

The lady is Caz49 and she lives in suburb that we were looking for a home..just near my sister..

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Amazing! All the folk I have had personal contact with from this site are such lovely people, I hope things go well for you.

XxxX

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So sorry to read your husband has been diagnosed with PSP. You will be amazed at the amount of information and help you get from all the super carers who are looking after their loved one’s on this site. Others will tell you there is nothing wrong with babbling; ranting or feeling totally frustrated we all need to let of steam at some stage. So sorry you and your husband have to be on this PSP journey. My very best wishes to you both. Jxx

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Welcome to this site. You sound shell shocked by the last couple of years. I remember how hard it was to get past the disbelief. To realise I had lost my energetic husband.

It is comforting to realise you are part of a big "family " who know what you are suffering.

Love from Jean xx

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Hi Allan924, I'm only new to this site too as my husband was only diagnosed on 2nd March, 2018. This site is a fountain of information which will be very helpful as time goes on. I read all of the posts all of the time and have worked out that everyone is different which doesn't help me work out what will come next. We take one day at a time and be thankful for the time together. TJ will be coming home on Friday after 10 days in John Hunter Hospital with aspiration pneumonia and three weeks in Toronto Private for rehab. He has to have a new wheelchair with more support and a commode which we are waiting on being delivered. As he had a fall in which he dislocated and fractured C6 & C7 vertebrae leaving him an incomplete quadriplegic 2 1/2 years ago, this has masked a lot of the early signs of PSP. This makes it hard to know what lies ahead as I haven't come across anyone else with similar problems.

We live in Speers Point, Lake Macquarie - the north most place on the Lake and am happy to share our experiences as far as doctors, hospitals etc. if you need any help.

As I always say, stay strong and tell them how much you love them every day.

Caz49

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Welcome Allan924

These are things that may help you if have not already done so.

Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.

Do your research,do ask here,so many knowledge people here with first hand experience.

Try to stay ahead of this disease, look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.But most important,take care of yourself.

Dee in BC

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Thanks Dee

We have lots of mobility helpers. Shower chair..over toilet seat...4 wheeled walker...3 wheeled walker and an electric scooter. Barry doesnt use the scooter now. I think he has lost confidence

We do not have DNR or Enduring Power of Attorney. He was a bit funny about it a few months ago but now I am seeing rather a fast decline things will have to be sorted..

I took Baz to the pool for some physio and he could barely lift the rigid right leg ans he says his shoulder is also very sore. It was worrying to say the least and he has coughed/choked a lot today.

Anyway we got through another day and we are both still smiling...

Thankyou to everyone for you advice anf kind words x Kim and Baz

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Hi there, Marg H from Barnawartha Vic, hubby has had P.S.P. for 8 years plus now, went into a nursing home 8 weeks ago in Albury, we are Grey Nomads, travelling for 8 plus years now, Leon had 7 great years on the road, I am now house/pet sitting in and around Albury/Wodonga area, it is a horrid illness, I don't know how Leon has lasted this long, he is down to 55kgs, can no longer talk, eat, pivot transfer, however his brain is amazing, better than mine, I joke that I want it transplanted to me when he choses to go to another world. I feel for you

Hugs xxxoo

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How great to have travelled !! You must have some wonderful memories !!!

Jean xxx

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That we have, Leon wants his ashes spread somewhere in Tassie, like I do also.

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Wonderful that you have been able to travel. We will go to Tasmania soon as Baz has always wanted to go..

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Tasmania is absolutely amazing, we went for a planned 2 months and stayed 11 months, that was when I 1st noticed something amiss with Leon, I will live there one day, absolutely the best State in Australia

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Kim,

You have not babbled on. Sometimes when I feel at the end of my rope, I post here and find a wealth of support and knowledge about this cruel disease.(PSP/CBD).

Your story is much like many of us. Where doctors misdiagnose this disease because of its rarity. My wife had similar symptoms and was misdiagnosed with early onset aleiheimers at 53. It was not until last year that we found a specialist that through imaging tools has diagnosed her with CBD, which better matches her symptoms. Unfortunately there is no cure for this disease, only continual decline.

You are doing the right thing by surrounding yourself with family(especially grandchildren) and friends. Push to do as much as your husband is capable.

Post here whenever you feel overwhelmed. You are not alone. Your friend,

Bobby

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Thanks for the kind words Bobby. This site will be my home for a while and I look forward to making new and supportive friends...x

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I have 3 grandsons in Melbourne. So I am an Aussie want to be. My wife is unable to travel now, so we rely on them traveling and FaceTime to keep up with the boys.

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Welcome Kim!

Did you also see the post Australians by Nayook about 16 days ago? Hope you make contact with lots of Ozzies.

Warmly,

Anne G. in B.C.

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Thankyou Anne..I will have a look..cheers Kim

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