Over the last 30-40 years a lot of money has been spent on both trying to find a cure for parkinsons and bringing new drugs to market. I would like to see more money spent on research into finding a way to overcome the performance issues of current levadopa drugs in relation to protein and digestive interaction. This is a major problem, particularly after you've been taking levadopa for several years. Personally for me after 11 years living with parkinsons i find this to be my number one concern. I have tried all the usual stuff like, "avoid protein diets" and i use domperidone to help empty my stomach more quickly etc etc.
What i would really like is a levadopa drug that gets to my brain without running the gauntlet of the digestive system of being impacted by me eating cheese on toast for my lunch. Surly in this day and age and with money to burn, pressure could be put on the drug industry to find a way of overcoming this issue. On the few occasions thesedays my levadopa medication is not impacted by the protein/digestive/stomach problem i feel great and almost symptom free.
Maybe the drug companies should develop a spray form of levadopa, one that you can inhale so it goes straight to the brain and not via your digestive system?
I couldn't agree more, Blue-eyes.
I thought it was just my husband having to decide whether to walk or eat!
I thought it was just my husband having to decide whether to walk or eat!
Hi Blueeyes,
I agree with everything you've said, I too am in a similar situation to you.
I think you will find this of interest:
The Michael J. Fox Foundation (MJFF) for Parkinson’s Research (MJFF) has awarded a grant to Civitas Therapeutics to support development of the company’s lead product, CVT-301, an inhaled levodopa (L-dopa) formulation for the treatment of symptoms of Parkinson’s disease. CVT-301 is a carrier-free dry powder formulation based on Civitas’s proprietary Arcus particle engineering technology and delivered using the Arcus breath-actuated DPI. Civitas was launched this year as a spin-out of the Alkermes respiratory delivery business, and the Arcus technology was originally developed by Alkermes.
The company expects to begin clinical trials by the end of 2011 and to complete proof-of-concept by the end of 2012. The grant will support development to that point. The total amount of the grant was not disclosed.
Want to know more? http://www.oindpnews.com/2011/11/michael-j-fox-foundation-awards-grant-for-development-of-inhaled-l-dopa/
I agree with everything you've said, I too am in a similar situation to you.
I think you will find this of interest:
The Michael J. Fox Foundation (MJFF) for Parkinson’s Research (MJFF) has awarded a grant to Civitas Therapeutics to support development of the company’s lead product, CVT-301, an inhaled levodopa (L-dopa) formulation for the treatment of symptoms of Parkinson’s disease. CVT-301 is a carrier-free dry powder formulation based on Civitas’s proprietary Arcus particle engineering technology and delivered using the Arcus breath-actuated DPI. Civitas was launched this year as a spin-out of the Alkermes respiratory delivery business, and the Arcus technology was originally developed by Alkermes.
The company expects to begin clinical trials by the end of 2011 and to complete proof-of-concept by the end of 2012. The grant will support development to that point. The total amount of the grant was not disclosed.
Want to know more? http://www.oindpnews.com/2011/11/michael-j-fox-foundation-awards-grant-for-development-of-inhaled-l-dopa/
I can assure you goldengirl your husband is far from being alone with this problem. The eating vs taking levadopa medication dilemma is big for a significant number people taking levadopa. Also as years go by, the levadopa performance issue just gets worse as medication time windows become more frequent. This means your left with a choice, eat and cant walk or don't eat and walk.
hi Cutie, very interesting article and its good the MJFox Foundation is supporting the potential development of an inhaled form of levadopa. However the first question which comes to mind is, why has it taken the so called experts over 40 years to realise something needs to be done on this issue? After all its not rocket science, particularly when you consider drugs like cocaine work on the same brain receptor's as Parkinsons drugs. And as far as I'm aware cocaine is not handed out via tablets and patches or with a warning not to take it after eating protein food! As far as I'm led to believe its inhaled via the nose and directly into the brain for maximum effect....!!
I would like to know how many other people out there are experiencing the levadopa/food problem and if its impacting your quality of life.
hi Cutie, very interesting article and its good the MJFox Foundation is supporting the potential development of an inhaled form of levadopa. However the first question which comes to mind is, why has it taken the so called experts over 40 years to realise something needs to be done on this issue? After all its not rocket science, particularly when you consider drugs like cocaine work on the same brain receptor's as Parkinsons drugs. And as far as I'm aware cocaine is not handed out via tablets and patches or with a warning not to take it after eating protein food! As far as I'm led to believe its inhaled via the nose and directly into the brain for maximum effect....!!
I would like to know how many other people out there are experiencing the levadopa/food problem and if its impacting your quality of life.
Hello blueeyes47,
My husband has had this problem for most of his pd life and it isn't always the main proteins that affect him, we found he couldn't have a Chinese meal that had soya sauce in so we got the yeast free one called Tamara. It is so difficult to be able to keep a check on all these things but we found that if you have a madopar dispersal about twenty minuets before a meal it lift the level up so that you don't have the off's, of course some people may not be on them but I feel it has such an impact on peoples lives that the doctors should be able to give these tablets even if it is just for a special occasions. We have also noticed that most pwp's have a sweet tooth and of course that doesn't interfere with the meds, so enjoy.
I think it would be very good if you can keep the pressure on for this problem to be taken more seriously as it affects a lot of people not just a few and mainly the early onset group.
best wishes
vivian
My husband has had this problem for most of his pd life and it isn't always the main proteins that affect him, we found he couldn't have a Chinese meal that had soya sauce in so we got the yeast free one called Tamara. It is so difficult to be able to keep a check on all these things but we found that if you have a madopar dispersal about twenty minuets before a meal it lift the level up so that you don't have the off's, of course some people may not be on them but I feel it has such an impact on peoples lives that the doctors should be able to give these tablets even if it is just for a special occasions. We have also noticed that most pwp's have a sweet tooth and of course that doesn't interfere with the meds, so enjoy.
I think it would be very good if you can keep the pressure on for this problem to be taken more seriously as it affects a lot of people not just a few and mainly the early onset group.
best wishes
vivian
For me, the protein and levadopa rule no longer complies. I can't eat an hour after taking Sinemet because then the next dose of Sinemet fails to work. It doesn't matter what I eat, this still happens. Therefore I have been studying how PD affects digestion. The same nerve damage that contributes to motor problems in Parkinson's disease can also affect the digestive tract. Apparently, the muscles that move food along through the digestive system may suffer from a lack of movement or a slowed response. The inability of the stomach muscles to push food through to the intestines can cause delayed gastric emptying (gastroparesis); causing bloating, nausea and vomiting.
I'm not being sick but suffer extreme bloating, to the extent it feels like it's restricting my breathing. Medications may be used to stimulate the stomach muscles into action, such as Domperidone, which I've just introduced to my drug regimen. I've also discovered that if I eat after taking Sinemet it kicks in quite fast. However, if I eat too much the next lot of Sinemet fails to kick in. It doesn't matter if the meal contains protein, carbohydrates etc. Therefore I've changed the way I eat. I eat small and often but I also drink fruit juice or water first, followed by fruit or vegetables and then starchy vegetables and finally protein. I avoid foods high in fat because fat takes a long time to be absorbed. The theory is that you eat the foods that take the least time to digest first and the ones that take the longest to digest last. This way they pass through the stomach quicker which allows the Sinemet to enter the small intestine, where it is absorbed.
So far this is working quite well. At the moment I am taking Sinemet 100/25mg every 2 hours. I'm hoping introducing Domperidone will make my gut not so lazy and improve the absorption of the Sinemet which in return will allow me to go a little longer between doses. I've tried most of the PD drugs and don't have much choice left. So yes, please please can more money be spent on researching ways in which levadopa can by-pass the gut!!
I'm not being sick but suffer extreme bloating, to the extent it feels like it's restricting my breathing. Medications may be used to stimulate the stomach muscles into action, such as Domperidone, which I've just introduced to my drug regimen. I've also discovered that if I eat after taking Sinemet it kicks in quite fast. However, if I eat too much the next lot of Sinemet fails to kick in. It doesn't matter if the meal contains protein, carbohydrates etc. Therefore I've changed the way I eat. I eat small and often but I also drink fruit juice or water first, followed by fruit or vegetables and then starchy vegetables and finally protein. I avoid foods high in fat because fat takes a long time to be absorbed. The theory is that you eat the foods that take the least time to digest first and the ones that take the longest to digest last. This way they pass through the stomach quicker which allows the Sinemet to enter the small intestine, where it is absorbed.
So far this is working quite well. At the moment I am taking Sinemet 100/25mg every 2 hours. I'm hoping introducing Domperidone will make my gut not so lazy and improve the absorption of the Sinemet which in return will allow me to go a little longer between doses. I've tried most of the PD drugs and don't have much choice left. So yes, please please can more money be spent on researching ways in which levadopa can by-pass the gut!!
Hello everyone
Thank you for the very interesting discussion.
It's always really useful for us to hear about the more hidden problems people with Parkinson's experience to inform our work - whether that means developing appropriate information resources, campaigning or funding research.
Developing treatments for Parkinson's that can be inhaled is happening - some funded by the Michael J Fox Foundation as Cutiepie pointed out.
And, this also being considered as a way to deliver stem cells one day:
http://www.parkinsons.org.uk/default.aspx?page=11580
Some current medications can be taken by patch (rotigotine), or via a pump that delivers the drug straight into the intestine (apomorphine and duodopa) - and finding better ways to deliver the current treatments is something we have funded research into in the past.
Thanks again for all your comments on this issue which I will share with my colleagues.
Best wishes
Claire
(Research team)
Thank you for the very interesting discussion.
It's always really useful for us to hear about the more hidden problems people with Parkinson's experience to inform our work - whether that means developing appropriate information resources, campaigning or funding research.
Developing treatments for Parkinson's that can be inhaled is happening - some funded by the Michael J Fox Foundation as Cutiepie pointed out.
And, this also being considered as a way to deliver stem cells one day:
http://www.parkinsons.org.uk/default.aspx?page=11580
Some current medications can be taken by patch (rotigotine), or via a pump that delivers the drug straight into the intestine (apomorphine and duodopa) - and finding better ways to deliver the current treatments is something we have funded research into in the past.
Thanks again for all your comments on this issue which I will share with my colleagues.
Best wishes
Claire
(Research team)
Therefore I have been studying how PD affects digestion. The same nerve damage that contributes to motor problems in Parkinson's disease can also affect the digestive tract. Apparently, the muscles that move food along through the digestive system may suffer from a lack of movement or a slowed response. The inability of the stomach muscles to push food through to the intestines can cause delayed gastric emptying (gastroparesis); causing bloating, nausea and vomiting.
Interesting Cutie.
Obviously all muscles are affected by P, both those visible aspects and those internally.
March 2011, OH had a complete intestinal blockage which was corrected by a sigmidoscopy at the second attempt.
June 2011. Another complete blockage and removal of the sigmoid colon was advised so that this would not happen again. 3 weeks in hospital, op postponed so blockage for 8 days, 5 days in ITU post op. Meds. not administered made the situation much worse.
November 2011. Same symptoms. Discharged with a prescription for 5 days of Domperidone. Strange, OH took this at the very start to counteract nausea.
We were told that removal of the sigmoid colon would prevent it happening again, BUT, we were not told that it could happen again in another part of the digestive system.
I have bought, and they have taken, Domperidone a few times over the last months when Movicol and Lactulose have not done their work.
Interesting Cutie.
Obviously all muscles are affected by P, both those visible aspects and those internally.
March 2011, OH had a complete intestinal blockage which was corrected by a sigmidoscopy at the second attempt.
June 2011. Another complete blockage and removal of the sigmoid colon was advised so that this would not happen again. 3 weeks in hospital, op postponed so blockage for 8 days, 5 days in ITU post op. Meds. not administered made the situation much worse.
November 2011. Same symptoms. Discharged with a prescription for 5 days of Domperidone. Strange, OH took this at the very start to counteract nausea.
We were told that removal of the sigmoid colon would prevent it happening again, BUT, we were not told that it could happen again in another part of the digestive system.
I have bought, and they have taken, Domperidone a few times over the last months when Movicol and Lactulose have not done their work.
turnip tip #1023
after extensive testing (one day) I have found that taking madopar with a cup of hot water (not too hot!) or black tea seems to improve and speed up the absorption quit a lot.
this is probably not news too many but it is too me so i thought i'd share it.
ps thats 3 hours after a very nice lunch of chips and tempura battered flounder.
cheers
after extensive testing (one day) I have found that taking madopar with a cup of hot water (not too hot!) or black tea seems to improve and speed up the absorption quit a lot.
this is probably not news too many but it is too me so i thought i'd share it.
ps thats 3 hours after a very nice lunch of chips and tempura battered flounder.
cheers
Good morning Cutiepie and everyone,
What an interesting discussion, this is where I find it doesn't matter how long anybody has had PD there is always something new to learn from one another's experience which I am really grateful for.
My husband has had a problem with bloating for many years and bowel problems become a main isssue, he used to take domperidone when he was on apo but he has never had is suggested for bloating or assisting the digestive system, I will see if he can have it added to his medication again. Thanks turnip for all your very interesting articles as I am mainly spending my time chasing up my oh's care problems and the lack of care by his PD consultant and getting his false teeth, you wouldn't believe it has taken three months to get another set and he has choked three times already.
I would like to have downloaded your post cutiepie but don't think I can off the forum could you email it to me please and then I will take the main part to the nursing home, if I take too much they won't bother to read it.
I hope you all have a lovely day
vivian
What an interesting discussion, this is where I find it doesn't matter how long anybody has had PD there is always something new to learn from one another's experience which I am really grateful for.
My husband has had a problem with bloating for many years and bowel problems become a main isssue, he used to take domperidone when he was on apo but he has never had is suggested for bloating or assisting the digestive system, I will see if he can have it added to his medication again. Thanks turnip for all your very interesting articles as I am mainly spending my time chasing up my oh's care problems and the lack of care by his PD consultant and getting his false teeth, you wouldn't believe it has taken three months to get another set and he has choked three times already.
I would like to have downloaded your post cutiepie but don't think I can off the forum could you email it to me please and then I will take the main part to the nursing home, if I take too much they won't bother to read it.
I hope you all have a lovely day
vivian
Hi Vivian, sorry for the delay in reply ~ I've emailed you the post you requested.
Best wishes,
Cutiepie x:)
Best wishes,
Cutiepie x:)
i got a tummy scan thursday,to see why i have bloated tum and problems with bowels etc.been like this for bout 7 months,had lots of treatment to try go loo,and stop bloating ,im on a soft food diet now,done by the dietian at shrewbury.but it took till now for them to decide to do a tum scan.all this sufering and all the added meds to me system carnt be doing me any good.
Hi Cutie pie and alji,
Thanks I got the email okay, You have my sympathy alji everything is such a struggle, my OH has just got his teeth after three months it drives me crazy, also I had the GP ring me today to ask me why he had to do a blood test when this was all discussed at a meeting four weeks ago with various staff members it never ends does it.
When my OH had a scan to see if his bowel was empty after taking the usual meds to clear him out they found that he still had quite lot left, which exlained his pain.
Best of luck with your situation and I hope it gets resolved quickly.
How are you feeling, I wish they could catch the rotter.
Best wishes both
vivian
Thanks I got the email okay, You have my sympathy alji everything is such a struggle, my OH has just got his teeth after three months it drives me crazy, also I had the GP ring me today to ask me why he had to do a blood test when this was all discussed at a meeting four weeks ago with various staff members it never ends does it.
When my OH had a scan to see if his bowel was empty after taking the usual meds to clear him out they found that he still had quite lot left, which exlained his pain.
Best of luck with your situation and I hope it gets resolved quickly.
How are you feeling, I wish they could catch the rotter.
Best wishes both
vivian
hi vivian,thankyou for replying to my post,could you tell me when your hubby was so bloated and struggle with loo,after taking so many meds to help relase,like me,did he ever feel very sick,or be vomiting?,cus i do,and this is also why they looking at prob with tum,see wot happining.your rite vivian ,never seems to end,why enearth gp had to call the patient for to ask bout the blood test for is beyond mehope hubby getting on with his new teeth ,i rember when dad had his,he could not get use to erm,kept gaging all the time and saying they hurting him,and refused to put erm in in the end,wonted to be gummy and free,was his words
i went out yesturday first time in two weeks,apart from goin police station,but that was being picked up by the police.today i got pyseio on me hips,beci taken me,but being in a hospital with so many people round me,well you can imagine wot im like this morning,nerves a teather,and tummy doin sumersolts,but i no i have to do it,and not let him take all my life way.vivian also could you tell me if hubby suffered with swallowing problems,when eating,im on soft food diet now,and aslo has his voice gone very quite?
hope hubby getting on with his new teeth ,i rember when dad had his,he could not get use to erm,kept gaging all the time and saying they hurting him,and refused to put erm in in the end,wonted to be gummy and free,was his wordsi went out yesturday first time in two weeks,apart from goin police station,but that was being picked up by the police.today i got pyseio on me hips,beci taken me,but being in a hospital with so many people round me,well you can imagine wot im like this morning,nerves a teather,and tummy doin sumersolts,but i no i have to do it,and not let him take all my life way.vivian also could you tell me if hubby suffered with swallowing problems,when eating,im on soft food diet now,and aslo has his voice gone very quite?
I found this documentary of great interest:
Horizon - Eat, fast and live longer!
http://www.bbc.co.uk/iplayer/episode/b01lxyzc/Horizon_20122013_Eat_Fast_and_Live_Longer/
Worth watching!
Horizon - Eat, fast and live longer!
http://www.bbc.co.uk/iplayer/episode/b01lxyzc/Horizon_20122013_Eat_Fast_and_Live_Longer/
Worth watching!
Hi Alij,
My husband didn't have any sickness, so I am not surprised they are doing a scan
you need to keep insisting they investigate as this can't go on.
My husband hasn't been put on a soft diet even though they said they would as he hadn't any teeth and had choked three times and they had to call the Paramedic, it drives me mad. Thank heavens he now has them and I can understand him as well as him feeling better to have some nashers in. He has a quiet voice this is very common with PD and if possible you should have some speech therapy as it makes quite a difference, you will need to keep up the exercises but it would make a huge difference for you.
I expect you have been watching the olympics they have been great, I hope the closing ceremony will be good then the para ones to follow Great!!
At least that is something to take your mind of the last few weeks a bit, still no news of catching him I suppose.
Just to give you a laugh I go swimming several mornings a week to help with my back problems, I look dreadful and have to use an aqua belt to keep me up not a pretty sight, I try to do about 25 lengths, I told them I am doing team GBOAP and hope to win some chocolate medals oooh lovely.
love vivian
My husband didn't have any sickness, so I am not surprised they are doing a scan
you need to keep insisting they investigate as this can't go on.
My husband hasn't been put on a soft diet even though they said they would as he hadn't any teeth and had choked three times and they had to call the Paramedic, it drives me mad. Thank heavens he now has them and I can understand him as well as him feeling better to have some nashers in. He has a quiet voice this is very common with PD and if possible you should have some speech therapy as it makes quite a difference, you will need to keep up the exercises but it would make a huge difference for you.
I expect you have been watching the olympics they have been great, I hope the closing ceremony will be good then the para ones to follow Great!!
At least that is something to take your mind of the last few weeks a bit, still no news of catching him I suppose.
Just to give you a laugh I go swimming several mornings a week to help with my back problems, I look dreadful and have to use an aqua belt to keep me up not a pretty sight, I try to do about 25 lengths, I told them I am doing team GBOAP and hope to win some chocolate medals oooh lovely.
love vivian
hi vivian,i had me scan last thursday,and was told to ring gp in a week,but the following day i got a call from gp,giving me my results,which has nocked me back agin.ive got told i got a fatty liver which needs monerting,cus i dont drink achoal,im not obese,and im already dibetic,it could be insulin needs looking at,or meds she said,havin a blood test ,then she say i got gall bladder stones and sending me to a gyno.and me bile duct is blocked from bladder to bowel,and tumer in stomach.all of this wwas bad news for me,so leaset i got answers now though i guess.i already see a speech thearpist vivian,in shrewsbury,she does help.as for the olympics watching it all like a hawk,and carnt wait for the para to start as well,it keeping my mind occupied,and least then not have to go out of bunglow.swimming 25 lenths vivian is very very good with a bad back,well done to you,you gave me a giggle wonting to win chocky medals,yummyas for the attack,still people being intervied,it seems to be a long process,mean time he still wadering the streets,they seem to think he left telford though.
as for the attack,still people being intervied,it seems to be a long process,mean time he still wadering the streets,they seem to think he left telford though.
Hi All
Very interesting to read your comments. I have struggled this year to sort out my digestive problems. Avoiding protein helped a bit but caused more stess.In a fit of anger I refused to eat and stated on "slimfast". I mixed it with rice milk which is more digestable. My day now starts with fruit and shake, veg soup for lunch and light supper like sandwich. Most days I live on snacks and drink lots of water and herbal teas, no coffee or booze.I occasionally eat a proper dinner, but mostly veg. The less I eat the better I feel and not having a food routine as
such is less stressful. I dont binge but eat what I fancy which stops the craving for icecream and crips etc. This may not be healthy but it works for me so far and I dont feel so bloated and maybe my weight will come down too!
Good luck everyone
Iris
Very interesting to read your comments. I have struggled this year to sort out my digestive problems. Avoiding protein helped a bit but caused more stess.In a fit of anger I refused to eat and stated on "slimfast". I mixed it with rice milk which is more digestable. My day now starts with fruit and shake, veg soup for lunch and light supper like sandwich. Most days I live on snacks and drink lots of water and herbal teas, no coffee or booze.I occasionally eat a proper dinner, but mostly veg. The less I eat the better I feel and not having a food routine as
such is less stressful. I dont binge but eat what I fancy which stops the craving for icecream and crips etc. This may not be healthy but it works for me so far and I dont feel so bloated and maybe my weight will come down too!
Good luck everyone
Iris
Hi Iris
I found your comments very interesting. Like you i find, the less i eat the better i feel. This is without doubt due to the levadopa drugs working better and any benefits not being depleted by the digestion/protein issue.
However the price i pay, just to get the levadopa drugs working is quite high. Very rarely nowadays do i engage in what you might call normal social activities, like Sunday lunch or dining out or indeed family meals. Sometimes it makes me feel isolated and even depressed because your unable to engage in normal stuff in respect of one's eating habits. It is bad enough having your daily life impacted by parkinson's disease without then having to run the daily levadopa digestion/protein challenge.
Personally i find it mind boggling, that nearly 50 years after levadopa first became available here in the UK this is still an issue. If drug companies and research experts cant find a solution to this problem, then i don't hold out much hope for them finding a cure for parkinson's itself within the next 100 years.
I found your comments very interesting. Like you i find, the less i eat the better i feel. This is without doubt due to the levadopa drugs working better and any benefits not being depleted by the digestion/protein issue.
However the price i pay, just to get the levadopa drugs working is quite high. Very rarely nowadays do i engage in what you might call normal social activities, like Sunday lunch or dining out or indeed family meals. Sometimes it makes me feel isolated and even depressed because your unable to engage in normal stuff in respect of one's eating habits. It is bad enough having your daily life impacted by parkinson's disease without then having to run the daily levadopa digestion/protein challenge.
Personally i find it mind boggling, that nearly 50 years after levadopa first became available here in the UK this is still an issue. If drug companies and research experts cant find a solution to this problem, then i don't hold out much hope for them finding a cure for parkinson's itself within the next 100 years.
Hello Blueeyes,
I know how much more difficult it was for my husband coping with going out to family occasions, we missed weddings and other family parties because of his PD, but we also managed a few because my family understood and they set aside a spare room so that he could rest until he could switch on again then rejoin the rest of us. We also found that a madopar dispersal was a life saver as it only takes about twenty minutes to work, do you think that your doctor would let you have some for these occasions or even generally as I think you have to have some quality of life.
We also invited friends to visit us more and usually that worked as my OH could take himself off to his room for a rest and join in when he felt better.We had his 60th birthday in our garden from about 3pm to 8pm as it was better for him and several of our friends took on that idea and found it worked well for them as they are all getting older.
I hope you can sort something out as you only live once and you want to enjoy things now. best wishes
vivian
I know how much more difficult it was for my husband coping with going out to family occasions, we missed weddings and other family parties because of his PD, but we also managed a few because my family understood and they set aside a spare room so that he could rest until he could switch on again then rejoin the rest of us. We also found that a madopar dispersal was a life saver as it only takes about twenty minutes to work, do you think that your doctor would let you have some for these occasions or even generally as I think you have to have some quality of life.
We also invited friends to visit us more and usually that worked as my OH could take himself off to his room for a rest and join in when he felt better.We had his 60th birthday in our garden from about 3pm to 8pm as it was better for him and several of our friends took on that idea and found it worked well for them as they are all getting older.
I hope you can sort something out as you only live once and you want to enjoy things now. best wishes
vivian