I was sorry -- and surprised -- to read in today's Wall Street Journal that singer Linda Ronstadt's doctors have determined "that I don’t have Parkinson’s but something called progressive supranuclear palsy. It can’t be treated with medication."
Wow.
She recently gave a talk here (Northern Calif.) about her career with film clips and she seemed as sharp, interesting and funny as ever.
That’s bad news. PSP can be more damaging and more difficult to treat than PD. Hopes and Prayers to Linda. — JG
There is NO treatment.
There are many patients on this forum who are bravely dealing with PSP and have stories to share.
My husband recently passed from PSP, after suffering with this terrible disease for ten years.
May he Rest In Peace ✌️
Dang.
My son was first DX with Parkinsons, Jan 2015, and three years later re-DX with PSP. He died May 4, 2017. It's a HORRIBLE disease....one of 6 PRIME OF LIFE BRAIN DISEASES (PSP, MSA, CBD, ALS, FTD, CTE). His first symptoms appeared March of 2014..........DOUBLE VISION, SLURRED SPEECH, and HEAVY FATIGUE. Life expectancy is generally 3-7 years, although some live longer, some die sooner. HOW VERY SAD.............
Why does it take them so long to diagnose it? That happened to my mom too. She was diagnosed with Parkinson's, and moved from San Diego to Washington state to be close to her sister. But the doctors there concluded what she actually had was Lewy Bodies Dementia. I asked my doctor whether PD turns into PSP or LBD and she said no, that they are entirely separate diseases.
Because it’s so complex. See my link
The symptoms, in the beginning, are so similar to Parkinson’s. Sorry about your Mom.
This is not good to hear. Linda is a wonderful singer and i wish her all the best as she faces the challenge of PSP.
May she be surrounded by family and friends and supported and loved as she bravely fights on.
This proves that even wealthy people can get healthcare that makes diagnostic mistakes! It’s not just us little peons who suffer from professional mistakes! Sad to hear of this! I’m holding my breath on my own PD diagnosis. My cousin died a year ago, THOUGHT to be PD, but in three years he died at 53 with CBD, another PD variant, much more deadly.
When you are at your regular meeting with your Neurologist and he asks you to do some things with your hands in front of your face tapping your fingers together , and looking up then down and then walk . He is looking for first indicators of a set of diseases often referred to as Parkinson's Plus which includes Progressive Supra-nuclear Palsy. My neurologists have done this for over 15 years and and at the end always say yes it is Parkinson's , and I breath easier, I have the easy one . I also thought that if it was not PD ,it would have been diagnosed earlier but apparently I still could be at risk , because the tests continue . Several of my friends from the PD support group have been re-diagnosed.
So the next time that your feeling down because you have PD, think about why I agree with the Great Mohammed Ali and Michael J Fox when I say say :
"I am a lucky man" Michael J Fox
"Live everyday as if it were your last because someday you're going to be right.” Mohammad Ali
Say it ain't so.
Linda Ronstadt's last concert was in 2009 and she's has said she saw symptoms a few years before that, even though she was not diagnosed until 2013, but still, while I do not know anything about PSP, I cannot help but wonder why it took so long to figure it out? Is that common?
It is common
It’s very common for this terrible disease, PSP to be misdiagnosed. My husband was diagnosed with anxiety, depression, Parkinson’s, FTD and then PSP. He lived for ten plus years with PSP. The last four years were horrible, it strips you of everything.
Let's have a moment of silence -- while she sings Blue Bayou.
On the thiamine FAQ page that Art /Easilly collected from direct replies by Dr. Costantini to this forum, in question and answer #56, Dr. Costantini states that HDT/thiamine/B-1 has shown benefit in other neurological disorders. Under the circumstances and given the nature of PSP, it certainly seems reasonable for Linda Ronstadt to consider looking into HDT/thiamine and its safety profile, if she hasn't already done so.
Here is a link to that HDT/thiamine/B-1 FAQ page :
My husband Dave was first diagnosed with PD in 2011,then in 2018 was told he also has PSP, double the fun, with a little Dementa thrown in for giggles and laughs. He has a very positive attitude, since medication for tremors did not seems to help, he now is off all medication. See no doctors except for our family doctor. And is enjoying life since we have moved to the country, here in beautiful valley outside of Merritt BC.
So sorry to hear that !! At least with pd there is some light!! A fine singer.
That’s so ironic and true. I never would’ve thought that I would see a “positive” in the disease.
Hi Becky;
You are still here 
How are you doing?
It seems like more and more people, famous ones, like Allan Alda are coming down with PD.
I myself have gone from PD to no PD to Parkinsonism.
It has been a long road!
I hope you are doing well, and I would love to hear from you
Lovingly, Eva
From a caregiver
News from The Scripps Research Institute .
Rytary switching, tips from your success?
Good news
Good news from Annovis (for Alzheimer's)
