C-ya’ll

[Rhonda838]

I think I might be too early along for this site everyone one is dieing already I’m not ready to talk about that yet! Sorry folks... I know I’m going to be there one day but for now these stories really just bum me out!

Rhonda Caples

[Brenive]

Your never to early too to learn from this site , fore warned is fore armed.

[raincitygirl]

Rhonda, as with all of us, you must do what supports your health and life the best. For you it may be just focusing on the positive, and getting out to do all you can right now. If you need psp knowledge you know where to come!

All the best in your journey

Anne G.

[doglington]

Anne G speaks wisely, Rhonda.

When you are ready to hear more, you know where we are. Good luck.

Love from Jean x

[Benny22lovesus]

Bless your heart , this disease is frightened .Take a break when you need one .

[Rhonda838]

None of the brain 🧠 tests can tell you anything... sry

[DeDeDickson in reply to Rhonda838]

When I first heard of PSP, I was told there wasn’t a test that could prove the diagnosis. So when the doc ordered an MRI and then told my husband that it was definitely PSP, I found out about the hummingbird. Google “hummingbird as it relates to PSP”. There is a test that can show the disease in brain stem.

[Rhonda838 in reply to DeDeDickson]

Sry DeDe but my neologist two of them told me there isn’t any tests that can prove either psp, pd or any other. neological problem..in other words it’s cant tell the difference between psp or an old stroke ..

[DeDeDickson in reply to Rhonda838]

That is interesting because when they told us the MRI showed PSP, they also said that it showed a recent stroke, which was a total shock. When we went back to the doctor and had a chance to look at the screen, it was two different views ... the hummingbird and the assumed stroke.

I’m all for second opinions. We will see our primary neurologist in April and are scheduled for another visit to a well known hospital in May. I’ll let you know what additional information we get.

[Rhonda838 in reply to DeDeDickson]

Plz do

[Rhonda838 in reply to DeDeDickson]

Where dis you say you live? SC?

[DeDeDickson in reply to Rhonda838]

Yes. Are you in the States?

[Rhonda838 in reply to DeDeDickson]

Yes. Georgia... northern

[Donnasue1 in reply to Rhonda838]

Go to another Neurologist..because it is so rare not all doctors are familiar with the disease. Which is why I recommend going to a university hospital where they are conducting clinical trials.

[Kevin_1 in reply to Rhonda838]

Hi Rhonda

I really understand that this site can be too much to bear.

We were lucky enough to see a Professor specialising in PSP and CBD at UCLH London. He does a lot of research on these illnesses. It's an international level centre of excellence collaborating with the top centres in this country, the U.S. and elsewhere.

To paraphrase him - Yes these illnesses can be diagnosed with a very high level of certainty. The MRI scan as part of the confirmatory diagnostic suite. Essentially the modern diagnostic procedure is called differential diagnosis. Many different tests are done and each piece of evidence rules out other illnesses until all you have left is the illness that fits all of the results.

Liz spent two whole afternoons doing one set of tests and then two days in hospital going through batteries of them.

I hope you don't mind me saying this. Its important that folk here get the correct info.

You don't have to read the posts BTW - You can post if you want to clarify something or just let folk now something and ignore all else.

Hoping to see you here again one day.

I do wish you the best with this awful illness.

Warmly

Kevin

[daffodil48 in reply to Rhonda838]

my husbands MRI also showed the Hummingbird shape which changed our diagnosis of PD to PSP

[enjoysalud]

I was a caretaker for my son who was DX first with PD and almost three years later with PSP. So, I think I understand your response.

The PD site is filled with suggestions that seem to help those with PD. The majority written by the person with PD.

(I reside in Los Angeles, CA, USA, and so did my son.....we are the state being sued by the Trump administration for our lack of cooperation over immigration).

THIS PSP site, at first, seemed only to share the decline of the PSP and written by the caretakers.

My son died May 4, 2017, and I have had much more time since his death to EACH day skim the sharing and read more carefully those that I think will help me.......dealing with my grief and helping me understand better PSP.

There is much HELPFUL information here.....ESPECIALLY on the pharmaceutical TRIALS being conducted and the EXPERIENCE OF THOSE PARTICIPATING.

THERE is hope. However, those trials were not brought up to my son by his NEURO......possibly because most the trials are being conducted by health facilities (health insurance) affiliated with research universities. HOWEVER, one does not have to have health insurance affiliated with a research university to be accepted for the trial.

One HUGE trial, being conducted by BIOGEN, is being offered all over the world....in Japan, UK, Austria, Canada, Korea, Spain, etc etc etc. There are others.

I would urge you to at least skim the titles. There is much information. Even if you can't or chose to not participate you can share it with your Neuro, WITH HOPE that in your lifetime with PSP there will be medical HELP.

With good thoughts and prayers for you.......Margarita

[raincitygirl in reply to enjoysalud]

Well said Margarita PS: I recently visited your beautiful state (one of my favourites) and one of the things I admire about CA is your strength! Stay strong...

Anne G.

[enjoysalud in reply to raincitygirl]

Mil gracias...........I do feel so fortunate to live in Los Angeles, home to my birth.

[Donnasue1 in reply to enjoysalud]

Good advice Margarita. Have you visited with your PSP friend at U of LosAngeles. The drug companies do not care if you are insured they need volunteers as the disease is so rare.

[enjoysalud in reply to Donnasue1]

Hi Donnasue it was your post encouraging participation in clinical trials (after you shared how your husband seemed to be improving) motivated me to write my response to Rhonda.

Yes I met with a person from this site at UCLA (University of California at Los Angeles). It was a wonderful visit, a reunion of 2.

I learned lots. In addition, seeing that my alma mater has grown and keeps growing.

Best, Margarita

[Donnasue1 in reply to enjoysalud]

Thank you for staying involved and helping others who are living with this terrible disease. As a care giver, your spirit is remarkable. Hope your new friend has a positive reaction to the medication. From what I understand the drug will be opened to the public sometime in the summer.

[enjoysalud in reply to Donnasue1]

Wow, THAT is fabulous news. Have they gotten result already? Where can I read about it?

Time to close my computer and crash.

Many blessings, Margarita

[DeDeDickson]

Rhonda, I can so definitely understand your feelings if you are the patient ... or even the caregiver.

My husband was recently diagnosed with PSP (less than two months ago) after having had a Parkinsons diagnosis for six years.

I would love to take each day as it comes and not look for declining symptoms ... but I do find myself gravitating to this site to learn more and also to join in with some pretty awesome folks. However, I do not then share much of anything with my husband. He doesn’t need to know/worry about where his path is taking him.

Come back when you feel it’s comfortable with you!

xoDorie

[Hidden]

“Dance. Smile. Giggle. Marvel. TRUST. HOPE. LOVE. WISH. BELIEVE. Most of all, enjoy every moment of the journey, and appreciate where you are at this moment instead of always focusing on how far you have to go.”

We are here if you need us.

Dee

[Katiebow]

Understandable Rhonda, different people deal with things in different ways. I am carer for my husband and he didn't want to know anything and would have done the same as you intend. I personally have found this site a great source of information and support but I'm the carer not the PSP sufferer so may have felt very different about reading all of the posts if that were the case. You may feel ready later on through your journey but at the moment enjoy your life and embrace every opportunity that comes your way, I wish you all the best.

Kate xx

[Megabrew88]

Rhonda, I understand where you’re coming from having had the same sentiments 5 years ago.

You’ll know where to come for information, help and support when you think you’re ready.

This is an amazing group with genuinely sympathetic and supportive ( and experienced) people.

[Heady]

We will always be here for you. For now, just concentrate on what you can do, not what you can't, get your bucket list finished, see the world. Most of all, LIVE!!!

Sending bug hug and much love

Lots of love

Anne

[easterncedar in reply to Heady]

Can I have a bug hug, too?

[Hidden]

Understandable. The one thing I get from this site is how variable everyone’s progression is with this disease. I read this site for what could possible happen. The only way to truly know what exactly happened is an autopsy on brain tissue.

[easterncedar]

Dear Rhonda,

I do understand! There has been some discussion about separating the posts of those who are post PSP, as it were, so as to keep the space more welcoming to other folks. i have also wondered if there could be a way to foster conversations among folks with PSP in some way separate from those of the caregivers, although many of us caregivers have to speak for our loved ones.

In my experience over the many years here, the community changes with time as new folks join and the subjects are rejuvenated, concerns aired, and connections made and cohorts of shared experience are formed, evolve and move on. Kind of like a school.

I am sorry that this doesn't feel like a supportive place for you now, but I'm glad that you have spoken up. I am sure many folks just silently back away.

If anyone reading this is feeling like Rhonda is, I'd like to encourage you to speak up, post, take this place over and find your cohort. Making friends who are sharing your experiences is the whole point!

Love to all,

Easterncedar/Sarah

[enjoysalud in reply to easterncedar]

Hi, I did not participate on this site to meet new friends, but did meet one.

I joined to learn...about the disease, about the challenges, about things that had helped and not helped. The support I see extended on this site warms my heart. We each get to speak our own truth/experience. Fortunately, they differ.

I am indebted to all that has been shared on this site.

I find the mix of newbies (caretakers and diagnosed) adds greater depth and breadth to the discussion. I do NOT read each and every posting, but to do try to skim all. In sadness I now have more time.

Margarita

[Donnasue1]

Not so Rhonda, you can learn a lot about caring for yourself during every stage of the disease. I find the people on this site are all about living, but are not naive to the fact that we all must eventually die, care givers as well as PSP patients. Be advised there is help out there.

[smallshaw]

I know what you mean Rhonda. I am in the same boat!!!

Chin Up you are so young.

Love

Margaret

[Rhonda838 in reply to smallshaw]

Hi Margaret, whats with you?