Finding it difficult to cope

Hi everyone. just recently been diagnosed and have been in the dumps ever since. I keep thinking the worst and imagining every possible disastrous outcome. My wife is very supportive and assures me that I will be ok. Exacerbating the situation is the fact that I can get very little sleep at night because my left foot has a constant tightening sensation and I think I have some Restless legs symptoms. I am only on week 3 of madopar medication and it doesn’t seem to be having any effect. All in all I am quite anxious and depressed and wonder will I ever be able to cope as the disease progresses. I suppose I am looking for some light at the end of the tunnel. Any advice would be greatly appreciated. Thanking you in anticipation

Hubby has the same issue with his leg tho it only started when he starting taking slow release madopar at night to help with his stifness in the morning. He has now decided to stop taking it as he feels the leg issue at night is worse than the stiffness on waking.

Hi, I am on Madopar too and it took 6 weeks for any positive effect. I was put on 62.5 3 times a day initialy increasing every week until 250 three times a day. I would ring the PD nurse for advice (either at PUK or at your hospital) if you have any concerns.

Hi there, I was diagnosed in 2014 and suffered badly with restless leg syndrome. My PD nurse prescribed Rotigotine patches, it lasts 24 hours and my restless legs disappeared. I have had to up the patches to 2 as the symptoms came back but now I am fine again. Honestly talk to your nurse.

If you do have RLS, some herbal remedies I use are Avena Sativa, Gotu Kola, and Valerian Root (the last to help me sleep when I need it), plus some vitamin supplements. All are discussed in this link:

Beyond that, if you want some tunnel light you can possibly act on now, suggest you do some due diligence on Ambroxol for Parkinsons (much also on this board about it). This light which I personally did act on 14 months ago, has reduced my anxiety about my future with PD tremendously.

thanks for your response, very interested to hear of ambroxol. Pardon my ignorance but how has it reduced your anxiety about the future? do you actually take the product as medicine to help you?

yes, I have been taking Ambroxol for the past 14 months, most of the last 13 of those at 600mg/day (300mg 2x day).

thanks for your response. I don’t have a PD nurse in my local practice so I am wondering if my GP could prescribe some Rotigotine patches? They seem to be effective from what you say. One other thing, Is anxiety a symptom of PD. My anxiety levels have gone through the roof, particularly at night. Is there anything you would recommend? I recognise that a deficit of sleep may be a contributory factor.

I am told to increase dosage until I am taking 3 125mg three times a day. Is this a therapeutic dose do you think? You are on 250mg three times a day. Is that a more realistic dosage? I suppose my neurologist might increase it accordingly. Generally do you find the Madopar beneficial? Is it possible to feel worse before you notice some improvement? So far I am in to week 3 and my symptoms appear to have gotten worse. I have terrible stiffness and slowness of movement. Is there any light at the end of the tunnel? I also am experiencing muscle tightness in my feet especially at night so I am getting little or no sleep. Do you think that Madopar will rectify the problem when it eventually kicks in?

I didn’t think ambroxol could be taken on a long term basis. What benefits do you get from it re. PD? Thanks again for your patience.

Hi boomerang83, I recently heard 800mg a day wasnt particularly high and a top neurologist said to keep going up till it had an effect. (EPDA Levadopa Myths and facts ). Ring the PD nurses on the PUK helpline for advice and reassurance.

I didn’t think you could go to such a high dose. I suppose the risk of side effects would be much greater. Presently I have no side effects but I usually tolerate medications very well. All in all would you say Madopar is an effective drug for PD?

I’d be very careful before you start on medication I no I for one wish I hadn’t, they don’t tell you about all the side effects, people say it’s the Parkinson’s I don’t believe that because I don’t believe that you would feel the way you feel with Parkinson’s alone.

that’s a difficult one. I suppose I trust the neurologist. My impression is that he knows best and if left untreated my symptoms will get worse. It’s really a catch 22 situation. I am taking atremoplus powder to supplement the madopar. What medication are you taking presently? Thanks again for your response.

yes, Amboroxol can be taken pretty safely at a high dose on a long term basis, that’s exactly what the trials have been testing (1st link below), and what I have done for the past 14 months now. Primary benefits for me are no PD brain fog, much reduced freezing and easy to mentally break when they do, some notable motor improvements in my left hand and face, and sustained levels of reduced meds. For me waiting to start Ambroxol until all the evidence was in meant that my progression would continue to approach the “point of no return…beyond which the damage to the neural systems affected by synucleinopathy can no longer be protected or revived, even with the most effective therapies." (2nd link below). Something I was absolutely not willing to risk.