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!

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 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.

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

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!!

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)

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.

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

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