Sharyn Update - PSP

[jimandsharynp]

Hi, just an update on my wife Sharyn who as PSP. When we saw the Neurologist last he and Sharyn and I didn't think the Carbadopa/Levadopa she was taking was working. She was on it, things didn't change, then off it, things didn't change. We thought there might be some VERY sight benefit that maybe we weren't seeing so she went back on it. That was a year ago. The neurologist said "Lets get off it and try Amantadine" we agreed. So we gradually reduced the amount of Carba/Leva to zero over a week. Surprise! Shock! Sharyn went totally bad. She went from being somewhat stable to hardly being able to stand and walk. I quickly emailed the neurologist asking what to do. He and we agreed to not try Amantadine and get back on Carba/Leva which we did, a small dose for starters. Well it made the best improvement you could imagine. So we are now very happy again. Just shows that this PSP is sometimes a trial-and-error type of deal. I understand that Carba/Leva sometimes only works for a period of time with PSP patients but a least it's working for us now. I abreviated to Carba/Leva after spelling it out the first time above.

Jimbo

[SharonAB]

Please pass on my support to your neurologist. It is great to hear from you about people working together. Keep enjoying life.

Regards, Alana - Western Australia

[jimandsharynp in reply to SharonAB]

Alana, Yes the neurologist we see at the University is the best in many ways. He never rushes in and rushes out. He'll spend as much time as we like with us. I find the University staff and doctors VERY professional and much prefer them to our local neurologist and staff.

Jimbo

[JoJo-K]

That's great news for you guys, so pleased you have something that IS making a difference. So pleased for you both, it's 6.30am here in the UK and your news has put the biggest smile on my face :))

Love & best wishes to you both

Jo xxx

[jimandsharynp in reply to JoJo-K]

Jo Jo Thanks. It's 11:30am here in Sunny Florida (USA) and your well wishes are greatefully received.

Jimbo

[capsey31]

Delighted for you and your wife that you can see the results of taking this drug. I am getting on to my Father in law's neurologist this morning to ask him to prescribe this drug for him. Fingers crossed it will be available in the UK.

[jimandsharynp in reply to capsey31]

Capsey, Yes Sinamet spelling may be incorrect is Carbadopa/Levadopa with an extra drug to help it get into your blood quicker instead of just wasting away in the stomach. It's widely used for Parkinson's and sometimes works for PSP patients. Give it a try and see if it will help with mobility.

Jimbo

[jillannf6]

hi jim and sharyn

good news that it is makign a difference to sharyn

it is available in the uk too - tried it btu to no avail!

LOL JILL

[shasha]

IT IS VERY INTERESTING TO HEAR OF SOMEONE ELSE WHO IS BENEFITTING FROM A PD DRUG - I TAKE MODOPAR , 2 TABS IN THE MORNING IN BED TO HELP MY LEG PAIN

[mrsfarringdon]

Hello everyone

Its good that this med is working; like I wrote the other week about me dad since they uped the dosage of this" med " he has a new lease of life good for him " nightmare" for us he just wants to walk everywhere something he couldn't do before so he has to be watched all the time I hate it when he falls it hurts me more than him . I hate seeing him all bruised . Now having problem with him sleeping but doctor said has nothing to do with uping the medication just waiting to hear from specialist if they can give him anything to sleep any ideas ? Love to you all x

[jimandsharynp in reply to mrsfarringdon]

What dosage of Carbadopa/Levadopa (Sinamet) is he on?

Jimbo

[mrsfarringdon in reply to jimandsharynp]

Hi. Jim

Dads now on 275 mg three times a day: as I said such a difference; may be its going to be just a high til his body gets used to that then he may come back down with a bang. A few weeks ago he couldnt do much now he was standing up on his bed the other night but fell off backwards hit head on radiator more bruises and cuts . Must go dad calling x

[JudyJ]

Thank you so much for sharing this; how scary, tho, that must've been for both of you; what a close call. You are such a great advocate and careful watcher of Sharyn. God Bless you both.

Judy J

[jimandsharynp in reply to JudyJ]

Judy, Thanks. Don't go walking near a football field, with that helmet they might recruit you.

Jimbo

[JudyJ in reply to JudyJ]

LOL; I needed that.

[Hidden]

As someone has said it is all trial and error and what works for one may not for another. One reason for this could be that there are variations of PSP and CBD which are sometime governed by Lewy Bodies cluttering the nerve pathways in different areas of the brain. We live in an area ignorant of PSP and Mum was given Madopar (Levadopa ) with 2 weekly increases over 6 weeks when she peaked and was maintained very well on 10 tablets a day spread into 3 doses for about 2 months when someone who did not understand mum's problems decided to trial her on a dementia medication which sent her spiralling downhill and seemed to knock out the effect of the Madopar.. When she came off the dementia medication it took 2 weeks to get back her movements and she never got the strength back in her neck. I think that the variations of the illnesses are what make it so difficult to find a common treatment or cure.

Take care and make sure you always get in writing what effects any medication might have and read it carefully. We were told that we should look out for changes for the worst but not that they may be really slight to begin with and build up. By the time we realised it was the weekend and we were not able to get permission to take mum off the second medication and she went a further 2 days of rapid decline before we could get support.(we needed permission a she was in a care home and it is to protect patients from interference of her medication.)

[jimandsharynp in reply to Hidden]

Thanks for the information. It may help one of us along the way.

God Bless,

Jimbo

[bubbie in reply to jimandsharynp]

hi there, glad to hear that sharyn is doing better thank god. alan tried cinemet and levadopa but it was terrible for him, he now takes stalevo and amantamine and that at least works a little bit. no improvement in a very long tome. it is so so sad for him and me. hope u continue to get good results. bubbie

[jimandsharynp in reply to bubbie]

Bubbie, My heart goes out to you and your hubby. It's a real struggle for patient and caregiver.

Jim P