Mum has been in hospital for 10 weeks recent diagnosis of PSP

[Laneybop]

My mum is 84 years old and has recently been diagnosed with PSP after the humming bird image was found on a SPECT scan , all other scans came back clear. My mum woke one morning having lost all power to her legs , she was unable to sit without falling over and her upper body was so rigid she was unable to feed herself. She is still able to swallow and has no issues with her eyesight although they have started giving her eye drops. She is now been given Levodopa and they are gradually increasing her dosage . She’s now able to move her legs , so much so she can walk with her zimmer with the nurses assistance . She can feed herself again and can sit in a chair . I am aware that Levodopa can help in the short term . My question is , has anyone else had any success with using Levodopa and how long did the benefits last ?

[Tippyleaf]

Dear Laneybop

My husband took Sinemet plus ( part of the Levoadopa family) throughout his illness with good effect. He was convinced it made no difference and and one point insisted on weaning this down - he was virtually catatonic without it. He had very classic PSP . Some people with PSP respond but the majority of people from what I have read on this site seem not too - fingers crossed for your mom that it helps.

Love Tippy

[Laneybop in reply to Tippyleaf]

Thanks Tippy , my head is all over the place and being the ever optimist I’m just trying to hold onto anything that even offers a glimmer of hope.

Take care,

Love Laney

[AnneandChris in reply to Tippyleaf]

I agree Tippy. Chris was on Sinemet and it really did help. x

[doglington]

My husband also took Sinamet throughout. I don't know if it helped but he did believed it did. He had classic PSP. Jean x

[allotmentartist]

My husband is taking it he got diagnosed in August 2016 he is still mobile with help I don't know how he would be without them as he has never refused them good luck with your mum its a shock when you first find out, so sending a big hug xx

[ConcernedEx]

Where there’s life- there’s hope.

Do whatever you can to stay positive.

Everyone’s different with medications. I know my ex stopped his levadopa

But if it’s working for your mom- then everyday is a gift.

Good luck- hold on- it’s a jumpy road that no one wants to be on.

My best feeling is to letting loved ones know they’re not alone and very much loved.

[Marilyn_cbd12]

Hello. My husband found that Sinemet was definitely helpful for several years in reducing stiffness in his limbs . When severe stiffness later developed in his neck it did not help with those muscles. Overall it was the only medicine that gave him any consistent benefit.

Marilyn

[daddyt]

I am still on Sinemet... have been for six years. In my case, I believe it makes a huge difference, although some days I question it. Many have no positive effect with the drug and go off of it. However, my MDS says that when the drug is reintroduced, patients have had better results.

Tim