No more meds for my husband!!!

I usually don't respond, I just read everyones posts but I would like to say a big Thank You to all that have talked about the medication Dr's put patients on. My husband, has either PSP or CBD and I think he has both but the Dr says you can't. Anyway, he has been on Corbadopa/Lopadopa (not sure how to spell) for 3 yrs. I've been reading posts on this sight for about 4 months and all I ever see is that very few of you patients take any meds. I ve been telling my husband for the last 4 months that he needs to get of of that medication. Yesterday he had his 6 month appointment and now his Dr says let's get you off of this medication. Thanks to all of you. You guys know more then my husbands Dr. Suz-USA

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17 Replies

  • My husband has co-morbidities so he takes medicine for his high blood pressure and his atrial fibrillation. But he also takes an anti-depressant. My thought is how could he not be depressed when he can do virtually nothing but watch TV or listen to a book and yet his mind is all there. He sleeps an inordinant amount of time. When he is not asleep but just lying there, I wonder what he thinks about. If I ask him, he just says "nothing."


  • I am sorry to hear about your husband. My husband is on an anti-depressant too. I really don't think that is helping him at all. He was also taking something to help him sleep better but he is off that and will be having a sleep apnia test at the beginning of Febr. He is tired all the time but can't sleep. So we are working on that. Thanks again for your response. I had a friend tell me I should be careful reading peoples blogs because some things might not be true. I have faith in this group. Take care everyone and have a good 2014!

  • hi there I`d love to know if you get some thing for you husband to help him sleep ,my husband cannot sleep .even before he was dignosed he did not sleep he was working and now i know it was very hard for him,the doctor will not give him sleeping tablets as he said he might stop breathing while he is asleep . christine

  • Dear Oops54,

    Though not tried by my husband, one day I was asked by a doctor if anyone with PSP had tried melatonin as there are trials that megadoses are helping with some other neurological illnesses(?). Perhaps worth asking about or researching.

    Also gather some people find CPAP (?) machines to be of great value. My husband had tests regarding sleep pattern, restlessness, lack of sleep etc and one was highly recommended to him - He refused to try so cannot report on success but I've read of others who have found one to be 'literally' a life saver.


    Alana - Western Australia

  • thankyou sharon .we have tried melatonin and it did not work,nothing seems to work I give him a panadole, I my self has a CPAP machine I don`t have sleep apnoea but I am also a restless works for me I can now sleep for three to four hours before i wake , and the best thing is mostly i don`t have to get up to the toilet . as for maurice he would not be able to use this machine as his neck is way back like he is looking at the ceiling oh I hate this disease .Christine Ballarat.

  • Dear Oops54, And there's more...

    I written a bit of a spiel about some makeovers I did around the home on previous postings- and some of what I call strange changes John made that made him sleep. For example a large screen TV with loud movies on in his bedroom made him sleep when the rest of housewhold were tearing their hair out. Perhaps they are worth loooking at???? (or maybe not?)

    Also John goes to any number of physio time sessions of different types where possible that physically exhaust to sleep (though I am sure he still truly switches off and sleeps!)

    I pretty much gave up on so many things from total exhaustion - in the end I had to look at what I could handle and being totally sleep deprived all the time didn't cut it with me... It was non-survival - I do hope you call on any support you can get to also give you yourself the sleep we all need,

    Regards, Alana - Western Australia

  • Dear Sluxford,

    I just read your note about your friends advice regarding blogs and what we read on the Internet. Though you will find a write a fair bit on this site - I agree with her and you (if that makes sense). It's strange what PSP has done to my way of thinking - in one breathe I'm not into 'new media' networks, as I'm doubtful & untrusting of so much of what I read - Basically I do wonder what someone is trying to sell me. However, so far what I find with this site - it seems pretty well 'monitored' and 'real' people get to talk about their 'real' life situations and for that it is of great value.


    Alana - Western Australia

  • Alana, you are correct. I think if any inaccurate posts were made just about everyone would respond quickly with corrective advice. Jimbo

  • Glad he is getting off them. Long term use of Carbadopa/Levadopa can be worse than anyone can believe. Google it for yourself. Jimbo

  • Thank you for your response Jimbo. I fell very strongly about getting my husband off that medicine. Now, my next goal is getting him to sleep better. He is only 52 and will be done with work by Jan. 31, 2014. Way to young to have to retire. We r both extremely scared of what the future holds. We just try to live one day at a time.

  • Wow, way too young to get PSP. Your circumstance is different than most. You have the right idea of a day at a time. It helps you get through. Perhaps he will qualify for disability or extreme circumstance and Medicare. Exhaust all the possibilities before deciding on an approach. If you pick disability it may stop some ability for much needed medical care later on. Think ahead and choose wisely. Good luck. Jimbo

  • The PSPA mag "PSP Matters" received today has advice to go for DLA (Disability Living Allowance) in the UK as soon as possible - if it is eventually awarded, backdated to first application. For the under-65s.


  • Good, may be your answer. Jimbo

  • Hi Sluxford,

    I'm new to this site, but in reading I was surprised to see someone else who's spouse was so young. My husband is 55, though his neurologist is still at the uncertain point, he is leaning towards PSP or CBD. He has exclude pretty much everything else. My husband has had problems for about 3 years. His started out with mostly cognitive problems. Looking back though, his balance was slightly off. Now his balance is off pretty much all the time. He has trouble swallowing, his vision is effected, he has no strength in is arms or hands, the list goes on. the only meds he is on is Cymbalta for his depression, and Ambien CR to help him sleep. He is on nothing else, and refuses to go on anything else. (which is ok with me.) He tried something for the cognitive problems, but the side effects weren't worth it. Sleep does not come easy. Without the Ambien there is no sleeping at all. with it he gets maybe 4 hours a night. He did a sleep study, but never fell asleep, even with the Ambien so nothing showed up there. I still am able to work. He had to quit work about 3 years ago for a back injury, so he went on disability then. That has saved us so far. With the way his health is now, no way he could still be working. He was in construction. It is VERY scary what the future holds. I'll keep working as long as I can. I worry about him a lot while I'm gone. We keep in contact during the day at least every hour. (email or phone). I have very kind neighbors who are supportive and willing to help. We are still blessed to have some "normal" hours in our day, although they are getting fewer. Good luck in your quest for sleep for your husband. My prayers are with you.


  • My husband is 54. He had to retire 3 years ago. Just got diagnoised with PsP one year ago. I am taking a leave of absence from my job in two weeks. My husband is falling more. He fell 4 times in two weeks and I was not home either time. It takes him about and hour and a half to get some where so he can work his way to stand up. He is just so weak. 3 weeks ago I called him from work and never got an answer. I came home and he was on the floor. He had been there for over an hour. That broke my heart. I made the decision right there to quit work. Just trusting God to get us through financially. My husband has been getting disability for two years now. When he started having problems with this he got diagnoised with post concussive syndrome. But ends up being PSP. I am trying find a home based business to bring in some income. Thinking about gift baskets. The only thing that helps my husband to sleep is a muscle relaxer. He has them for his rigid neck. He doesn't want to take them very often but when he does he sleeps good.

    God bless you and your husband. My prayers for you both.

  • Sounds like at this point it's best to be home. I'm sorry to hear this. My husband holds on to everything when he walks. Thankfully his path around the house there are things to hold on too. When he goes outside is when I worry the most. Was your husbands first symptoms mostly cognitive? That's the most frustrating thing so far for my husband. He can be talking or thinking just fine, then all is lost in a second. He has a lot of hand and cramping. Stiffness only comes if he's been sitting too long. So far his neck isn't ridged. I'm thankful for that. I hope you can find a home base business that will work for you. Gift baskets sound like fun. God will put you where you need to be.

    My prayers are with you.

  • Hi LynnO

    Thank you for the information. My husband has a physical with his GP at the end of January. I will ask him about Ambien and Cymbalta. He is also scheduled for a sleep study and sweat test in February. Will see how that goes! His neurologist thinks he has PSP and the neurophysiology dr thinks it's CBD. Not sure what the difference between the two really are. They are both horrific! We haven't applied for disability yet but I'm thinking I should get on it as soon as possible. I heard it takes a while before you are accepted. I'm still working so that helps. Not sure what the future holds. We are a little scared. This sight has been good for me. Very informative! Take care and God Bless! Sluxford USA

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