Rapid deterioration

[Headache58]

Hi over the last few weeks my PD has got a lot worse in that walking is dreadful, have relied on exercise and put off meds, if I start madopa am I likely to see side effects of behaviour issues like gambling etc

[MBAnderson]

Your odds are about 20%, but that fades when you discontinue the drug.

"CONCLUSION: Among the study patients with PD, new-onset compulsive gambling or hypersexuality was documented in 7 (18.4%) of 38 patients taking therapeutic doses of dopamine agonists but was not found among untreated patients, those taking subtherapeutic agonist doses, or those taking carbidopa/levodopa alone.

Behaviors abated with discontinuation of agonist therapy or dose reduction.

Because this is a retrospective study, cases may have been missed, and hence this study may reflect an underestimation of the true frequency."

ncbi.nlm.nih.gov/pmc/articl....

[Headache58 in reply to MBAnderson]

Many thanks for your help definitely food for thought

[park_bear in reply to Headache58]

The impulse control disorder applies only to dopamine agonists which are different class of drug than levodopa-based drugs such as madopar

[WinnieThePoo]

If only it were that simple. Dopamine agonists are undoubtedly front of house for ICDs but it's not black and white parkinson.org/living-with-p....

apdaparkinson.org/what-is-p...

frontiersin.org/journals/ne...

[Bunny622023 in reply to WinnieThePoo]

I agree - I don't think it's that black and white either. Not just agonists cause ICD.

[MarionP]

You can always bring up the drug gradually with a start of a small dose and then very gradually bring it up. Park Bear's response is a most reasoned one, and it is important to consider that levodopa-based drugs are not agonists, so immediate panic is not the proper initial idea, please resist the urge to over react to the "worst case scenario" worries.

Or you can look at it this way: try it out gradually, and "bet" you won't blow up your life right away. Once you get a baseline of drug in you you may find that you are less susceptible to acute extreme reactions in general, and that can be part of the idea of getting a little bit of drug on board. Certainly keep a watch out for increasing impulsive ideas and thoughts and yes, behaviors. But forewarned is also forearmed.

[DEAT]

I have been on Madopar for 7 years.NO issues or side effects whatsoever.

Began Sifrol (pramipexole) and after 9 months began to shop online and eat with little restraint. The shopping has stopped but I can eat indiscriminately which I never did previously

[MarionP in reply to DEAT]

Yes The difference between an agonist and just providing supplementally what is a deficiency, filling in something that's missing. Big difference. Filling in a gap, that's levodopa, versus pushing something to produce or add more than enough, which is the agonist chemical, that can make for too much.

[ghoegap]

To be clear: thus far you have not used any carbo levodopa?

[Headache58 in reply to ghoegap]

Correct, nothing

[LAJ12345]

Try the white madopar instant madopar 50/12.5 tablet . That way you can start with a small amount by cutting in half and increasing every few days if necessary, or don’t increase if you feel he is getting some benefit on a lower amount.

Try taking the small amount every 3 hours.

I think it’s kind of like taking morphine for pain. If you take just enough to dull the pain you don’t get addicted or have the side effects as you don’t get a high.

[LAJ12345]

if the deterioration is rapid I would first suspect medications but if he isn’t on them it might possibly be a virus or infection, lack of sleep, or a stressful situation that caused the deterioration. Just the stress of worrying about getting worse can make him worse.

If it is stress he could try a low dose of clonazapam. My husband takes a 0.5 mg tablet cut into quarters and spread over the day which reduces his anxiety which in turn reduces his symptoms.

Other things can be coming into winter and daylight savings finishing- get him to get outside in the bright light for a short walk as early as possible in the morning once it’s light. Also constipation- reduce meat and dairy and add beans and lentils meals every second day to push it through. Also frequent walking and not too long sitting down to get the system working.

[MarionP in reply to LAJ12345]

Good thinking, you always want to suspect that an abrupt change has a proximate cause that's not part of the underlying ongoing situation. Very good thought!

[Parkie1 in reply to MarionP]

I agree with the above. I do very well on low pulsatile dosing of Madopar 50mg, and 4mg Neuro patch, but if I encounter any level of stress, then I 'lock down '. I've learned not to worry that I'm suddenly deteriorating rapidly, so things level out when the stressful event is over.

[LAJ12345 in reply to LAJ12345]

Other things might be overheating or dehydration.

[Bouillabaisse]

hi. My husband started Madopar and his walking has significantly improved (along with lots of other symptoms). Although he has only recently been diagnosed

He was advised by neurologist to start on half dose with food for two weeks (to stop nausea), then move tablets to before food (as medication guidelines), and then on to full dose after 6 weeks. He has no nausea and no side effects, and the improvement is significant. So he is getting the most from life now. He also exercises most days and I’m sure this also helps.

[Biblelover]

Hello, Have you read the book by Norman Doidge, The Brain That Changes Itself? The first chapter is on a patient with Parkinson's Disease. He talks about he used anatomical imagery with each movement of his limb. There's video podcasts on imagery and movement. I appreciate all the previous comments about the dosage of medicine and I imagine that will help significantly. All the best.

[garyd11]

You may want to try Macuna first. It’s natural. Ask your MD about it. Don’t stop exercising.

[cceelen]

If you haven't started meds, you're a possible candidate for recovery. pdrecovery.org/ it's not an easy road, but I think it's worth consideration

[pmmargo]

Are you PIGD phenotype? Yeah until recently I did not know it could become superlinear. My sympathies.