Yay! Finally...a PSP diagnosis.

[journeyofjoy]

Who would ever think you'd be happy to get a PSP diagnosis? Well, we are. Maybe "happy" isn't exactly the right word, but at least relieved.

After waiting and wondering, testing, being observed, ruling out two other diseases (which he has but which are not the culprits) and assuming it was PSP or CBD, it's good to know what my husband (and I) are facing. We both feel relieved, like we can get on with life now. Of course, they're right about 50% of the time, but we'll take it.

I am determined to make the best life possible for us, as long as we can. Thankfully, my hubby has a grateful attitude. Remarkable really. Stays upbeat and grateful most of the time. We're both looking forward to our first grandbaby in the fall. So blessed to have this baby coming to bring joy into our lives at this special time.

I'm so thankful for all you people out there who have gone before us and who are going through this challenge right now.

All the best to each of you, Joy

[Hidden]

Dear Joy

I smiled when l read this because it brought back memories of my mom. After years of searching & numerous doctors & tests... Mom too was happy when she was finally diagnosed with PSP. I was baffled & asked her why...

She shared that she had felt her many doctors, family & friends thought she was making up symptoms just to get attention. She wore the Title of PSP proudly... as we searched to find out what PSP was...

This is good forum and will aid you & hubby in many ways along your psp journey.

Sending you & hubby hugs, Granni B

[Hidden]

After a year and a half of tests by one neurologist who was clueless as to what was going on I took all the results to another neurologist who was a movement disorder specialist. She gave me an answer of atypical Parkinson’s on the first visit then refined it to PSP on the second visit. The second neurologist had been a physical therapist before she went back to school to become a neurologist. I think she must have seen a number of people as a physical therapist like Larry.

[SewBears]

The first time a doctor mentioned CBD and ruled out several other possibilities we were relieved too. It’s like suddenly everything makes sense. It was just nice to be able to put a name to it. Yay! And 50% accuracy is about right because each time we see his doctor he scratches his head and second guesses what it is. Now we’re treating symptoms and having some positive results so it’s all good.

Keep being positive and enjoy welcoming your grand baby into the world. Congratulations!

[doglington]

It's not good news but you know its progressive. So plan for the inevitable and also live in the moment. Make memories. Keep a sense of humour . It will be needed.

Stay with us.

Love Jean xx

[Doublereeder]

Hi Joy, My mum and I smiled too at the diagnosis of PSP given to her a few months ago. The relief of knowing that there were reasons for little things that made no sense but you wouldn't see a doctor for and explaining to professionals that "something's not right". So it was blissful ignorance for a few hours until we could research it. But like you, the initial relief as we try and get on with life trying to understand what we're coping with.

Congratulations on your grandchild news, what a lovely event to look forward too.

[Bhakthan]

PSP is such a vengeful disease, it breaks down even the strongest! It progresses in its evil intentions until it shuts down the senses one by one and we have to bear it silently and helplessly until it takes away your loved one leaving you devastated! I have recently lost my loving, caring wife.

[WelshRugbyDaughter]

I think many of us have feelings of relief on diagnosis, particularly when it can take years and years to actually get an answer, six in my mother's case. And it's great that you and your husband have such a positive attitude. Make the most of every moment, and don't forget that there are people going through the same ups and downs on this site who are only too happy to share experiences and lend a shoulder. Much love C x

[Ettavb]

I get it! I too was happy to have it identified (CBD for my mom). Mom on the other hand, fired the doctor (3rd one🤪). She yelled at me and called me up on the phone and screamed at me that I was wrong. For years she denied the identification/naming of it; frequently telling others things like “I have A-Fib”. Telling people that I was wrong, and that I wanted her to have CBD (as if I had some bizarre contorted neurosis). It has only been in the past year (4 years after dx, and after 15+ years of having symptoms) that she has not vehemently denied having the condition or attempting to auto-correct anyone else for saying she has it. I’m a planner though and like to know what I’m dealing with. Only yesterday I was able to share with her that it was the disease that made her feel off balanced, (and the reason for so many catastrophic falls she’d had back a number of years ago), or made her feel as if she wasn’t straight in her bed of wheelchair - when she actually was.

So, in addition for being grateful for having the nomenclature, I’d say too - that grateful attitude of your husband is also a blessing (and your first grand baby too!)

[ncgardener799]

We are joining you in finally getting a diagnosis for my husband,it is also PSP-four years of tests and Dr's. We too are relieved that the symptoms have a name, while we are struggling to come to terms with all that diagnosis brings. We are trying to regroup and plan for the future- as best we can, while still making a strong effort to live life the best we can for now. This form is wonderful for support and information-I am grateful to all who share their stories and offer advise.

[LuisRodicioRodicio]

Hi journeyofjoy!

I'm sorry PSP 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.

This disease manifests itself 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.

By private mail I can send you our particular experiences on PSP-RS that we hope you can find useful.

I am not a phisicyan. The information I can to send you through this private mail is a compilation of our own experiences and of the people who participate in the PSP chats. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.

Hug and luck.

Luis