Delayed psp diagnosis : Hi my name is joe... - PSP Association

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Delayed psp diagnosis

Jantebi
Jantebi

Hi my name is joe. My dad was diagnosed with psp 8 years into his condition . He is still with us but is in really bad shape. Based on my research of psp I now understand why his diagnosis was delayed..

I would love to do anything I can to prevent this from happening to anyone! Both the psp and the delayed diagnosis!!

Such a shame!!

Joe

15 Replies
oldestnewest

Hello Joe

PSP is totally horrible, for the one with it and the carers.

But, you will know all of that and more.

I guess I am just saying welcome to the community here and that, if you don't already know, there is a wealth of acceptance and experience here.

Having said that you probably have much experience and lessons hard won, so please share.

Best to you and your Dad.

Kevin

Teeker
Teeker in reply to Kevin_1

Hi Joe welcome to this PSP family group. We all learn from and support each other. My husband was also mis diagnosed with Parkinson's for 8 years and was diagnosed with PSP 6 months ago. It was quite a shock because we had not heard or knew anything about PSP. Everything I know about it is what I learned from this support group. My husband can still do somethings for himself, but I notice small daily changes. We try to do as much as we can together and take one day at a time. I hope that you will be able to vent and moan as much as you want on here. Everyone is a good listener and we are all in the same boat. Huge hugs to you a nd your dadxx

Jantebi
Jantebi in reply to Teeker

HI Teeker

Thank you for sharing your story.. While we visited many doctors through out the process many gave us some advice that in my opinion is valid for early PSP patients. That advice is to keep active, stretch and try to keep young! If you are not already doing so I strongly suggest you put your husband on a daily exercise routine.. It will slow the regression..

I wish you lots of luck with your husband!

Joe

ninalulu
ninalulu in reply to Teeker

sorry , i m trying herbal remedies

Jantebi
Jantebi in reply to Kevin_1

HI Kevin

based on what i learned , its just bad luck...

It all started 1 day in NYC when my dad told me something is wrong.. He felt extremely unbalanced.. and then began the falling to the side and the mood changes .. He became extremely frustrated...

He is not at home with a feeding tube....

The hardest part of it all , is that he is aware of everything that is happening!!

How do we get the word out so those who have this horrible condition can plan accordingly???

Have you visited the PSP office in NYC? I would love to and meet the great people running it!

Joe

Kevin_1
Kevin_1 in reply to Jantebi

Hi Jantebi

Thanks for coming back.

It sounds like you are well down the PSP road. Dreadful road it is too. I hope it is going as well as it can be for you and yours.

I live a little far from NYC... Just outside London. :)

The PSP Association is doing exceedingly well in getting the message out over here. I expect the (superb) U.S Cure PSP is doing the same, but the U.S is a whole lot bigger and their job will be more onerous.

NYC has always been a great place for things happening :)

I'm glad you have access to the NYC PSP Office. Things like that make a whole lot of difference.

That' the bit that gets to me, "The hardest part of it all , is that he is aware of everything that is happening". Its cruel.

We are lucky - We have access to one of the top Neurology Centres in the UK. We won't be seeing the Prof. for another 5 weeks (appointments every three months).

Having aid that one of the great things about this site is that there is an immense international pool of information. We learn so much from that.

Best

Kevin

Mogi2002
Mogi2002 in reply to Jantebi

Hi Joe,

Where is the PSP office in NY? I am on Long Island.

Thank you

Jantebi
Jantebi in reply to Mogi2002

Cure psp

404 5th Ave.

3rd floor

Never reached out just saw this info on Facebook

Mogi2002
Mogi2002 in reply to Jantebi

Thank you, I will look into it.

I'm in coastal VA and am interested in this too. Please share what you find out. Thanks!

MndOvermnky has a lot of good sites and papers and research stuff he talks about to continue the health or study the health of the patient....Kevin_may have studies though he is very helpful more with the UK's medical system. CurePSP.org may help and so may PSPA have useful info on research or new meds ....Mostly as you know theres not much to in the way of medicine to delay the progression.....

The thing we are going to do is donate B's brain to CurePSP organization. There is a form they will send you that you and your dad can fill out...though dad doesn't need much more than a signature .....and Bs signature is illegible, but it's his. So when the time comes hopefully we will have everything in place....For us, thats the best thing that we can do to help find a way to prevent this horrible disease from happening to any other family.....

It is a shame but we must stand above PSP and not let it win! Thank you for thinking about others in this way

AVB

We are both leaving our brains for PSP research as they need healthy brains too. Xx

Amen to that, my mother in law was sent to an ENT specialist, had a brain scan, acid reflux test, sleep apnia test, had her thyroid operated on and many many more tests, all with no results. It took me changing her GP (the previous one was incompitent) to mine and she immediately noticed her shuffling gait and sent her to a movement specialist. There she was diagnosed with MSA, then later with CBD.

From my understanding, these disorders are rare, it may not seem so from all the people on this site, but they are.

Most GP's are not familiar with PSP,CBD, MSA and the rest of the ism's we know all to well.

Hugs

Paola

Hi guess we were fortunate bitter sweet with the diagnosis of PSP, my brother was seeing his Dr. starting to have symptoms he ordered a MRI the scan was not read right so after 8 months we took him to a Neurologist he looked at the brain scan looked at his eye,s looked at the scan again and then noticed shrinking in parts of my brothers brain and diagnosed him withPSP had never heard of that before, have done a lot of reading on it and thought oh my this is not good, my brother was always very active it has now been 6 years from running doing flips in the air to some one who cannot hardly see, wheel chair bound , can't move his legs , can't talk, write talk, I can go on but we are all there with are loved ones. Sorry Joe it took so long for you to find out your dads diagnosis it's such a terrible disease. Praying for your dads comfort and yours. Take care. Nettie

Jantebi
Jantebi in reply to Tttp

Thank you so much and thank you for sharing !! Wishing your brother all the best!!

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