I'm looking for help

[GIJAN]

Hello, More than a year ago I was diagnosed with ps p. before that I was treated for Parkinson's disease. and now there are two opinions, one that Parkinson's disease, the other psp. Maybe there is a test that determines what kind of disease it is? Please advise what should I do. Thank you in advance

[Sharsuk]

Hi GIJAN, My husband was treated for Parkinson's since 2019. March this year, we consulted a movement disorder specialist. He was diagnosed as having PSP-PAGF. The consultant asked us to get an MRI which confirmed it.

[GIJAN in reply to Sharsuk]

Thank you for your advice

[Sun-flowerwearer]

Hi GIJAN, My husband was initially diagnosed with Parkinson’s Plus as they felt it could be Parkinsons but some of the symptoms were not typically Parkinsons. He didn’t have a tremor for starters. It took 9 months from the first neurologist visit to receive our diagnosis. As PSP is an incurable progressive disease that shortens lives drastically whereas Parkinsons can often be managed and many people live into very old age they have to be cautious and careful about making the diagnosis. I have read that more than 60 percent of PSP sufferers are initially thought to have Parkinson’s as in the early stages there is a lot of overlap in symptoms.

For my husband it was the Monocular tests done on his eye movements at the Eye Infirmary that helped them firmly diagnose. I am not medical but his eyes are kind of fixed in place and he can’t move his eye balls up or down or track movements without moving his head…. It’s much more complicated than that but there are specific tests the eye experts can do that point them to PSP.

[GIJAN in reply to Sun-flowerwearer]

Dear Sun-flowerwearer,

Thank you for your advice

[Sjacob]

My husband was also diagnosed with Parkinson’s first, but within 1 year his vision (double vision), speech (unclear and muffled, now can’t speak at all), and balance (can’t walk without support at all), were all impacted. That’s when they diagnosed it as PSP. Parkinson does not progress so fast and almost always has tremors which was not the case with my husband. Also levadopa had no positive benefit on my husband. Levadopa works wonders with patients with Parkinson’s. Those were the key differences in my husbands case. My husband also has a fixed gaze now, can’t move his eyes at all.

[JarvisMarvis]

we had to pay for a DAT scan, which confirmed PSP

[Redjune1]

Hi GIJAN, my husband was told it looked like Parkinson’s but was never diagnosed with it. After an mri and a DAT scan he was told it was MSA and started on Cocaroldopa. The medication didn’t work and a year later he was told he most likely had PSP which seemed a better fit as he had such problems with his eyes.

[Troubleandstrife]

My husband's neurologist determined PSP by prescribing a course of Sinemet-Levodopa Cardidopa medication which can help relieve symptoms for those with Parkinson's but has no effect on PSP symptoms. But they eye-movement symptoms were the real determining factor in the end... I believe.

[easterncedar]

Hi, GIJAN. I’m sorry for what you are going through. It was an odd gait that suggested PSP to my guy’s neurologist initially. Trouble moving the eyes and the episodes of falling backwards are also symptoms that distinguish the disease. An MRI may show what is described as a “hummingbird” pattern or shadow on the brain. Lack of response to Parkinson’s medication is a strong indicator as well.

The diagnosis can be a shock. The progression varies a lot, and there’s no certainty about how any person may experience the disease or about the time you have.

Physical therapy can be a big help in maintaining mobility. We had good results from a program specifically designed for Parkinson’s, called LSVT Big.

I hope you have some support. Please stay in touch. This community is a great source of information and understanding.

[GIJAN in reply to easterncedar]

Thanks for the answer and explanation

[Epace]

my husband also diagnosed with parkinsons in 2015 moving forward Christmas his blood pressure became a major issue and I stopped working to look after him, parkinsons meds have never worked he went into hospital for tests lots of eye, cognitive tests and levodopa challenge unfortunately all pointing at PSP. Stopped all parkinsons meds only on midodrine for blood pressure, still wobbly but bit better. Still the odd wobble catching him in the shower at moment also trying to sort driving licence not easy subject to tackle 🙈

[LuisRodicioRodicio]

Hi Gijan,

I regret that you are immersed in this type of ailments. In this chat you will find support and suggestions to make this trip as smooth as possible.

To my knowledge 10 types of PSP have been described. The most frequent types are PSP-RS (Richardson syndrome-around 55%) and PSP-P (Parkinsonism-around 30%).

I have a table with some detail to help distinguish the different types of an "Excel-xls" document.

Simplifying a lot PSP-P does NOT present abnormalities in eye movement and the application of Levodopa gives positive results in symptoms such as "bradykinesia and rigidity".

If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really helps for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

This link could help:

parkinsonslifestylemanageme...

On August 2021 PSPA launched an interesting information about systematic exercises: “Tips for staying with PSP&CBD”.

pspasssociation.org.uk/app/...

I send you a reference through the internal chat.

Hug and luck.

Luis

[GIJAN in reply to LuisRodicioRodicio]

Thanks for the answer and explanation