My husband was diagnosed as having PD by a specialist 10 days ago. I had been worried about him for a couple of years after he stopped using his left hand (unless he had to) and his running gait seemed strange with his head forward of his feet like he was going to tip over, feet running short steps to keep up.

Friends started commenting that he was looking very stiff although he had no complaints of pain. Very slow movements from both hands, tricky to button buttons etc.
So the diagnosis wasn't really a surprise to me but unfortunately it was to Bob who had noticed all this but insisted he was "just getting old" (at a very fit surfing and skiing 62!).

The Dr wanted to confirm the diagnosis by putting him on Madopar, starting on just 62.5mg pills with meals and gradually increasing over the week to be 3 pills/meal.
We had been warned of possible nausea but had none of that. Just incredible weakness/tiredness and as we're orchardists in the middle of the busy season he was finding it increasingly hard to work.

Clammy and shrunken looking, I don't think I've ever seen him look so bad. Kept up his food though. Not sleeping either didn't help.
The Dr expressed surprise that we hadn't noticed an immediate change in his physical actions. Eight days after he started Bob had enough, said he had to be able to work and so stopped taking them.

My questions are: have other people had this reaction from the drug? How long did it take from starting to get a "good" reaction from them?
Also we've just realised that he's lost 4 kgs (8 lbs) in 5 months. Have other people had such weight loss associated with PD?

The Dr has now ordered an MRI so we can discount other possibilities and I guess all we can do is watch him to see if his problems seem to get worse.

Appreciate the forum. Jennie

We have a site search tool you can try while waiting for replies from members -
search link-
http://neurotalk.psychcentral.com/search.php

had good results starting with the first pill, felt great!
in the states we have a different drug called sinemet and contains l-dopa and carbidopa. your drug has a similar drug to carbidopa and l-dopa.
the carbidopa compound is to limit the potential nausea. l-dopa is a simple amino acid which gets converted to dopamine in the brain so strange he would have such a negative reaction. one possible side affect is lowering blood pressure.

i have heard of possible allergies to the binder, coloring agents added to the drug. in the u.s., the lowest dose is 100mg and yellow, the next size up is 250mg and blue. but i have no idea how rare this might be.

you can give these drugs to perfectly healthy people at the doses you described and they might get a little nausea.

Jcrum
You ask about others experience of Madopar, i have been on it about 4 years. It had a positive effect almost immediately. I did not have any of the problems you describe. But my starting dose was 125mg twice daily ie 200mg L Dopa in 24 hours and I stayed at that amount for some months. Sounds like your husband was on 450mg L Dopa daily and he reached this amount within a week.
Now he has stopped the dopamine challenge but he may begin treatment on these or similar meds. When/if he does start meds can i say that my experience has been mostly OK but i always go for introducing a small amount and slowly. I figure it takes quite some time for my body to adjust to meds and Ill be a lifetime on them so why rush.

Jennie, hi! I have YOPD and I've been on Madopar for one year now. Noticed improvement in my gait with the first pill (one quarter of a pill, 62.5mg). Many patients with PD will tell you a similar story, i.e. that they responded almost immediately to levodopa. However, not ALL patients respond this way. For example, patients with YOPD tend to have a more "robust" response to levodopa and at lower doses, as compared to patients with late onset PD. Furthermore, in patients with long-standing PD, more advanced disease stage or other comorbidities, it may take several weeks or even MONTHS before the full benefit of levodopa is seen, through SLOW titration to the appropriate dosage, which is different in each patient. I'm actually surprised your doctor agreed with discontinuation of levodopa that early on. That said, there's always the possibility of an alternative diagnosis, especially if symptoms remain unresponsive to relatively high doses of levodopa after a period of several weeks, but, in my humble opinion, I don't think you are even close to this point. You could also ask for a second opinion once you have the brain MRI results.
Good luck and keep us posted !!

That's really informative thank you. The posts in response to my question here have given us a lot to think about. I think it's a bit unfortunate that the Dr told us to expect an immediate response, and that we tried taking it at this time of the year when we're so busy. Bob was so weak and tired he couldn't work in the orchard and so the Dr pretty much had no say in it, he just stopped taking them. We were talking this morning and agree with you Christie that next time we would go much slower with increasing the dose, he was only on that same dose you started on for two days before doubling.
Surely wish more of our taxes here in NZ went to the health system so the wait for an MRI wasn't so long but I guess that patience is something to be learned from all of this too.

The other very worrying bit is his weight loss(considering he was only 120 lbs before losing it!) and I can only find small mentions about weight loss and PD on reading. He hasn't lost his sense of smell and seems to be eating what he always has, just slower...

Hi Jennie,
I am also new to this board although my husband has had his PD diagnosis for 2.5 years now. He has also lost weight particularly in his butt and legs. It is obvious that he is losing muscle mass as he previously had an athletic build. My husband could use the weight loss but yours obviously cannot! Since yours has an appetite I would feed him up! I am not an expert but common sense tells me that healthy proteins increase body mass as well as any exercise that can be tolerated. My husband is now in PT but the good news is he always responds well to it: he loses much of his stiffness and regains strength rather quickly. I hate that you will have to wait for the MRI but I can tell you that it was definitive in my husband's case. It seems that it is now possible to isolate PD in the brain. At least you will be treating the right disorder. My thoughts will be with you! Lynn

Brain MRI is always negative (normal) in patients with PD but is useful in excluding other conditions which may mimic PD. PD is mainly a clinical diagnosis and can be confirmed with a Datscan.

Of course I could be wrong but the MRI done on my husband by Head of Neurology in the Texas Medical Center in Houston, Dr. Ron Tintner, was stated to be positive for Parkinson's. He stated at the time that the test was only a few months old.

I think you are referring to another test the DaTscan, used for quite a few years in Europe, newly available in the US. Its expensive. We dont have it in New Zealand .