My husband can move pretty well through the day (with occasional episodes of freezing) once the drugs have kicked in. But at night and in morning he is almost rigid and sometimes the bed lever is no help. It can take an hour and a half to get out of bed. Over several months the DA's have been nearly halved because of side effects so this might be a reason for this problem. Do others have such contrasting mobility between day and night. The last pill is taken at 7.30 and he tried a low sinemet dose at night and that was no help. Any ideas?
I don't get an hour of it , but I certainly have this problem of being awake, but not really being able to do anything about moving around.
I have found that taking my meds late, late at night helps. Even 3.30 am!!
It's horrible though.
Best wishes
I have found that taking my meds late, late at night helps. Even 3.30 am!!
It's horrible though.
Best wishes
I'm sorry you have this problem too and thanks for replying. 3.30 isn't a great time to be awake and taking pills so you have my sympathy. I wondered if you have tried aids like a pillow lifter and if so whether it helped ?
Best wishes
Hilda
Best wishes
Hilda
Hello Hilda,
Sorry you got this problem. My h has absolutely the opposite problem. He is pretty bad for mobility in evening and we go to bed quite early and then by 11 or midnight his mobility improves, even tho the meds must have worn off by now, and then his mobility is pretty good until about 10 am after meds and after breakfat and then difficulty all day, improves by 4 and then off again later '
by the was wat is a pillow lift? sunrray
Sorry you got this problem. My h has absolutely the opposite problem. He is pretty bad for mobility in evening and we go to bed quite early and then by 11 or midnight his mobility improves, even tho the meds must have worn off by now, and then his mobility is pretty good until about 10 am after meds and after breakfat and then difficulty all day, improves by 4 and then off again later '
by the was wat is a pillow lift? sunrray
Hello Hilda,
I have very little mobility during the night, which is rather unfortunate because I'm awake for most of it! I've recently been advised to try taking one extra Madopar slow release 125mg at bedtime. It might be helping slightly,but I wouldn't say there's a lot of difference. I just hope that eventually we'll find the right combination of pills and the right routine for me, I hope things can be sorted out for your husband as well.
In the meantime I hope it halps to know that there are people who understand the problems and sympathise.
All the best, I'll let you know if I find a solution.
Leogirl
I have very little mobility during the night, which is rather unfortunate because I'm awake for most of it! I've recently been advised to try taking one extra Madopar slow release 125mg at bedtime. It might be helping slightly,but I wouldn't say there's a lot of difference. I just hope that eventually we'll find the right combination of pills and the right routine for me, I hope things can be sorted out for your husband as well.
In the meantime I hope it halps to know that there are people who understand the problems and sympathise.
All the best, I'll let you know if I find a solution.
Leogirl
Hilda,
After reading your post again, I wonder whether your husband has been given any Madopar dispersible to try. In the mornings I can barely move unitl I've taken a dispersible tablet (it takes about half an hour to work). I'm allowed up to three of these tablets a day depending on whether I need them or not, obviously I try not to take them if I don't have to, but Ive recently been having quite a lot of trouble with my tablets wearing off during the day and very often the dispersible tablets are the only solution.
Hope this might be helpful to you.
Leogirl
After reading your post again, I wonder whether your husband has been given any Madopar dispersible to try. In the mornings I can barely move unitl I've taken a dispersible tablet (it takes about half an hour to work). I'm allowed up to three of these tablets a day depending on whether I need them or not, obviously I try not to take them if I don't have to, but Ive recently been having quite a lot of trouble with my tablets wearing off during the day and very often the dispersible tablets are the only solution.
Hope this might be helpful to you.
Leogirl
Hello Hilda,
Sorry your husband is having these problems at night, as I don't know how long your husband has had pd for its a bit difficult to make comment, but my husband has had pd for almost 30years and as you can imagine his medication is very frequent in fact he has sinemet 125 every hour from 6am-10pm plus 4mg rapinerole and 3 madopar dispersal prn, he also has 4 Quetiapine and one Aricept which helps to clear the mind even though he has not got dementia.
Before he started on these tablets he was given slow release sinemet to help him through the night which was taken at 10pm, eventually because of his on/offs he was given a apo pump which was a god send and smoothed out the days really well but he eventually had to go on the pump at night as well, he started on the pump for the day about fifteen years ago and then the 24 hour pump about seven years ago, this eventually caused him to suffer from paranoia and psychosis so was taken off the pump all together. He does have some impulsive compulsive behaviour now and behavioural problems but it is not surprising fater 30years of drugs as well as the pd.
7-30pm seems very early for your husband to be taking his last tablet so it may be helpful for you to ask the consultant if he could have one for later as well, what we have learned about pd it is all about the good management to get the best quality of life possible. Even though my husbands has many problems he is still able to go to college two days a week from the nursing home he is now in (much to our great sadness) but I could not manage him at home any longer even with 24hour care. Sorry this is a bit long winded but it may help, also a good web site to look at to help understand pd is the dopaminergic pathways on wikipedia it explains a lot and I am sure will help you.
kind regards
vivian
Sorry your husband is having these problems at night, as I don't know how long your husband has had pd for its a bit difficult to make comment, but my husband has had pd for almost 30years and as you can imagine his medication is very frequent in fact he has sinemet 125 every hour from 6am-10pm plus 4mg rapinerole and 3 madopar dispersal prn, he also has 4 Quetiapine and one Aricept which helps to clear the mind even though he has not got dementia.
Before he started on these tablets he was given slow release sinemet to help him through the night which was taken at 10pm, eventually because of his on/offs he was given a apo pump which was a god send and smoothed out the days really well but he eventually had to go on the pump at night as well, he started on the pump for the day about fifteen years ago and then the 24 hour pump about seven years ago, this eventually caused him to suffer from paranoia and psychosis so was taken off the pump all together. He does have some impulsive compulsive behaviour now and behavioural problems but it is not surprising fater 30years of drugs as well as the pd.
7-30pm seems very early for your husband to be taking his last tablet so it may be helpful for you to ask the consultant if he could have one for later as well, what we have learned about pd it is all about the good management to get the best quality of life possible. Even though my husbands has many problems he is still able to go to college two days a week from the nursing home he is now in (much to our great sadness) but I could not manage him at home any longer even with 24hour care. Sorry this is a bit long winded but it may help, also a good web site to look at to help understand pd is the dopaminergic pathways on wikipedia it explains a lot and I am sure will help you.
kind regards
vivian
Hello Leogirl, Sunray and Vivian
Many thanks for your replies and helpful suggestions.
A pillow lifter which we have been considering is a battery operated pillow .You press a button to raise your top half and vice versa. My husband often has trouble raising himself in the morning and wastes a lot of energy heaving around and I can't always assist him. If he's virtually horizontal then it's a problem taking the meds safely.
Yes he does start the day with a dispersible madopar (which today we managed with a straw as he was just raised enough for that) and uses it in an emergency when he freezes. I wondered if it would be better to take it or something else at night instead as I too have been thinking that the gap of nearly 12 hours is too long.
He has had PD for 11-12 years now and it has really got worse in the last year. The requip was cut back to 10mg because of hallucinations and not really been replaced by anything. Perhaps as you suggested the drug regime needs to be managed a bit differently .
So sorry Vivan that your husband is in a nursing home but I'm glad he gets out to do interesting things.
Thanks again to you all for your support and ideas.
Best wishes
Many thanks for your replies and helpful suggestions.
A pillow lifter which we have been considering is a battery operated pillow .You press a button to raise your top half and vice versa. My husband often has trouble raising himself in the morning and wastes a lot of energy heaving around and I can't always assist him. If he's virtually horizontal then it's a problem taking the meds safely.
Yes he does start the day with a dispersible madopar (which today we managed with a straw as he was just raised enough for that) and uses it in an emergency when he freezes. I wondered if it would be better to take it or something else at night instead as I too have been thinking that the gap of nearly 12 hours is too long.
He has had PD for 11-12 years now and it has really got worse in the last year. The requip was cut back to 10mg because of hallucinations and not really been replaced by anything. Perhaps as you suggested the drug regime needs to be managed a bit differently .
So sorry Vivan that your husband is in a nursing home but I'm glad he gets out to do interesting things.
Thanks again to you all for your support and ideas.
Best wishes
Hi Vivian . That's interesting about the Aricept . I did ask our GP if it might help my husband .He hasn't got dementia but can only follow conversations in short dabs. . He is okay when the questions comes from himself , is still sharp his memory is stillgood although he gets anxious about the times of his next meds etc keeps checking with me. Do you think Aricept would be useful fotr this .
Good morning all,
I am glad that some of the comments may be useful, It is a little difficult for me to write on here sometimes, just because its difficult to keep it short which I am failing to do. Having lived with this disease and starting a branch you see so many different situations but if you can bare with me here are a few things we found helpful, After many years of seeing a Neuro consultant and many different registrar's we managed to change hospitals and came under a consultant for the elderly with a specific interest in PD we were still only 50years old, since that time our lives have been much better, and we were seen every three months and if there was a problem sooner.The problem with pd is that it is ever changing and once a year clinic is not enough even six monthly is a struggle sometimes.
If you are having difficulty with sleeping and are too stiff to move then you really do need to check with the doctor for a revue of meds, some people find the adjustomatic beds are good there are expensive and you can get doubles or singles pushed together, we tried many combinations but ended up in separate bedrooms and then my husband had a hospital bed which made a great difference.These beds are longer than normal but if you buy Ikea single sheets they fit really well without all the struggling.Another idea we used children's bed mats as they tuck in a little whereas some of the ads you get from nurses are just a square in the middle of the bed and they roll up. I always mentioned to members that it is useful to have a tablet, biscuit and bottle of water near so that if you get stuck you have it handy this is especially useful if you live on your own. Also if you live on your own please have a carelink button as my friend has been found on the floor several times now.
Jonnie I am not sure if that would help but my husband will still beat people at scrabble and enjoys college but he is unpredictable in his behaviour.
I had better end there but I do so admire you all as I know the struggle you are going through, have a good day
best wishes
vivian
I am glad that some of the comments may be useful, It is a little difficult for me to write on here sometimes, just because its difficult to keep it short which I am failing to do. Having lived with this disease and starting a branch you see so many different situations but if you can bare with me here are a few things we found helpful, After many years of seeing a Neuro consultant and many different registrar's we managed to change hospitals and came under a consultant for the elderly with a specific interest in PD we were still only 50years old, since that time our lives have been much better, and we were seen every three months and if there was a problem sooner.The problem with pd is that it is ever changing and once a year clinic is not enough even six monthly is a struggle sometimes.
If you are having difficulty with sleeping and are too stiff to move then you really do need to check with the doctor for a revue of meds, some people find the adjustomatic beds are good there are expensive and you can get doubles or singles pushed together, we tried many combinations but ended up in separate bedrooms and then my husband had a hospital bed which made a great difference.These beds are longer than normal but if you buy Ikea single sheets they fit really well without all the struggling.Another idea we used children's bed mats as they tuck in a little whereas some of the ads you get from nurses are just a square in the middle of the bed and they roll up. I always mentioned to members that it is useful to have a tablet, biscuit and bottle of water near so that if you get stuck you have it handy this is especially useful if you live on your own. Also if you live on your own please have a carelink button as my friend has been found on the floor several times now.
Jonnie I am not sure if that would help but my husband will still beat people at scrabble and enjoys college but he is unpredictable in his behaviour.
I had better end there but I do so admire you all as I know the struggle you are going through, have a good day
best wishes
vivian
Thank you Vivian for your very helpful reply , please keep going on and on , lol ,
I go on and on for britain since Parkinsons came to live with us . How on earth did anyone manage before the internet . It's been a mine of information to me in supporting my husband ..
You mentioned a hospital bed . The district nurse has place a request for one for my husband but I think it will take quite a while and it's why I have considered purchasing and ajustamatic bed myself possibly two singles . He likes me in the same room and I worry in case I didn't wake . Do you mean a waterproof baby's mat . I am using those silly little small ones . Trouble is do they make you sweat more .
Like you we have tried lots of different chairs etc and they don't come cheap . His latest rise and recline is most uncomfortable . the base is metal and the cushioning very poor .. It's not until you get it home and sit for longer periods that you can tell .
I am sorry that you are unable to have your husband at home anymore . ( but I do understand ) Each case is different , fortunately although not perfect my husband behaviour is fine , obviously can be frustrating , we have our moments but manage to talk it over and get back on an even keel . SO FAR )
He has been seeing a care of the elderly consultant since day one . He keeps saying that my husband is doing ok , he should come and live with us for a few days lol. They seem loathe to try too many different drugs my husband is 78 and has bee n having nightmares . Only medication he has tried is Sinemet plus and now the Rotigotine Patch . also low dose Amitriptyline at bedtime . His mobility is very poor Stiffness and balance /only manage a few steps at a time . I cannot honestly say the medication has been that helpful really , of course you cannot tell unless he stops taking them ?
So far I keep pretty well except I walked into a post today and saw stars!!!.
Please keep posting Vivian and take care yourself ..
I go on and on for britain since Parkinsons came to live with us . How on earth did anyone manage before the internet . It's been a mine of information to me in supporting my husband ..
You mentioned a hospital bed . The district nurse has place a request for one for my husband but I think it will take quite a while and it's why I have considered purchasing and ajustamatic bed myself possibly two singles . He likes me in the same room and I worry in case I didn't wake . Do you mean a waterproof baby's mat . I am using those silly little small ones . Trouble is do they make you sweat more .
Like you we have tried lots of different chairs etc and they don't come cheap . His latest rise and recline is most uncomfortable . the base is metal and the cushioning very poor .. It's not until you get it home and sit for longer periods that you can tell .
I am sorry that you are unable to have your husband at home anymore . ( but I do understand ) Each case is different , fortunately although not perfect my husband behaviour is fine , obviously can be frustrating , we have our moments but manage to talk it over and get back on an even keel . SO FAR )
He has been seeing a care of the elderly consultant since day one . He keeps saying that my husband is doing ok , he should come and live with us for a few days lol. They seem loathe to try too many different drugs my husband is 78 and has bee n having nightmares . Only medication he has tried is Sinemet plus and now the Rotigotine Patch . also low dose Amitriptyline at bedtime . His mobility is very poor Stiffness and balance /only manage a few steps at a time . I cannot honestly say the medication has been that helpful really , of course you cannot tell unless he stops taking them ?
So far I keep pretty well except I walked into a post today and saw stars!!!.
Please keep posting Vivian and take care yourself ..
Sorry Not been helpful that should read
hello jonnie,
many thanks for your reply and kind words, I feel that you may want to wait for a hospital bed as they rise up/down as well as the head and shoulders they also can rise at the foot end which is very useful if your husbands legs should swell. the ones you buy are about £1200-1500 pounds for a single and you may find that you can only use them for a short while. The bed mats I was thinking of are Huggies Dry nites for children but they may not be suitable for you. I can understand your husbands consultant being careful with the meds, that's the trouble with this rotten disease some things you just can't sort out.
I hope you feel better after walking into the post, I have had a lot of pain today so I have spent the day doing a few labels for my husbands clothes, I hope to be able to visit him tomorrow, he is and hour away.
best wishes
vivian
many thanks for your reply and kind words, I feel that you may want to wait for a hospital bed as they rise up/down as well as the head and shoulders they also can rise at the foot end which is very useful if your husbands legs should swell. the ones you buy are about £1200-1500 pounds for a single and you may find that you can only use them for a short while. The bed mats I was thinking of are Huggies Dry nites for children but they may not be suitable for you. I can understand your husbands consultant being careful with the meds, that's the trouble with this rotten disease some things you just can't sort out.
I hope you feel better after walking into the post, I have had a lot of pain today so I have spent the day doing a few labels for my husbands clothes, I hope to be able to visit him tomorrow, he is and hour away.
best wishes
vivian
Hello Vivian
It's really good of you to pass on this really helpful advice. I certainly hope my husband's drug regime will be improved after the next consultation which luckily is fairly soon. As you say the long period between appointments is awful when the condition changes quite noticeably. Did you have access to a PD nurse and if so was that helpful?
If things can't be improved then maybe a hospital bed might be a possibility. Useful to know about the Ikea sheets.
We have got the carelink button which gives me some peace of mind when I go out. I agree with you that anyone who is older living on their own would be wise to have one.
Thanks again and best wishes.
It's really good of you to pass on this really helpful advice. I certainly hope my husband's drug regime will be improved after the next consultation which luckily is fairly soon. As you say the long period between appointments is awful when the condition changes quite noticeably. Did you have access to a PD nurse and if so was that helpful?
If things can't be improved then maybe a hospital bed might be a possibility. Useful to know about the Ikea sheets.
We have got the carelink button which gives me some peace of mind when I go out. I agree with you that anyone who is older living on their own would be wise to have one.
Thanks again and best wishes.
This information from everyone on poor mobility at night has been most helpful to us. My husband is suffering from having difficulties both getting into an off the bed and turning at night. We had thought he might need the use of Madopar dispersable tablets and will be in touch with our pd nurse.
Hope you had a good visit to your husband today Vivian .
Hello Jonnie,
Yes the visit today was okay thankyou, I am always on tenderhooks as my lovely husband has really bad behaviour problems sometimes, I am a 60's music lover as is my husband and I always play loud music on my trips up and down the motorway, I play a lot of Rod Stewart and he was later than the 60's but I thank him for getting me home without crying all the way, it doesn't get any easier really and when you end up looking for everything from toothbrush, combs and about everything else you can think of it gets very frustrating, especially as he was always so tidy.
On another subject yes we did have a pd nurse and our consultant was very good but he is under another area and I must say it is nothing like as good.
Please everyone look on the forum or ask about aids or others thing that can be helpful as you can spend a lot of money and not get the benefit.
I must say since I have come onto the forum as an ex carer I appreciate the chats as it is very hard to suddenly be on your own after 44years together, but it makes me quite sad to think of all you young ones still having the same struggles as we did all those years ago.
I hope you have a good day tomorrow
best wishes
vivian
Yes the visit today was okay thankyou, I am always on tenderhooks as my lovely husband has really bad behaviour problems sometimes, I am a 60's music lover as is my husband and I always play loud music on my trips up and down the motorway, I play a lot of Rod Stewart and he was later than the 60's but I thank him for getting me home without crying all the way, it doesn't get any easier really and when you end up looking for everything from toothbrush, combs and about everything else you can think of it gets very frustrating, especially as he was always so tidy.
On another subject yes we did have a pd nurse and our consultant was very good but he is under another area and I must say it is nothing like as good.
Please everyone look on the forum or ask about aids or others thing that can be helpful as you can spend a lot of money and not get the benefit.
I must say since I have come onto the forum as an ex carer I appreciate the chats as it is very hard to suddenly be on your own after 44years together, but it makes me quite sad to think of all you young ones still having the same struggles as we did all those years ago.
I hope you have a good day tomorrow
best wishes
vivian