Hello, I'm new to this site and just wanted some advice. My dad is 68 and has been diagnosed with Parkinson's for a year now, but had the symptoms of the tremor probably a year or 2 before that. He currently won't take any medication, for reasons I'm only assuming he feels he doesn't need it or doesn't want to. The nurse and consultant have suggested he did, and is due to see the consultant again in may. I asked my dad what he thinks he wants to do now and he wanted to look into taking herbal medicine rather than medicine from the doctor. I don't know if anyone has had experience with this? What do does anyone think about taking the medication in the early days/years of being diagnosed? I know obviously for some it's very necessary but how do you know when the time is right or do the benefits of taking the medication early as, out-way the delaying of treatment? I know the Parkinson's nurse has said this had changed over the years, some said wait till the symptoms got worse, then it changed and said take it as soon as? I'm just worried if my dad keeps leaving and leaving it, it will not benefit him. Apart from the tremor he has shoulder pain, but these are the only symptoms he tells me about because he doesn't talk to me about it! Xx
Hi Natalie,
Welcome to the forum, you`ll find a wealth of beneficial information on here - I certainly have.
I was diagnosed recently and faced the same dilemma as your father.
When I voiced my concerns, my GP and neurologist echoed the opinion below.
Hope this helps.
There is no medical benefit to be obtained by delaying the start of treatment and there is some evidence that delaying it for too long can actually have an adverse effect in the long term.
PD sufferers decide to delay treatment for as long as possible. But if they wait too long, a higher dose of medication will be needed sooner - to control symptoms that have been steadily worsening over the years. The side effects from the higher doses of medication will occur more quickly. In the meantime, the person and the family will have endured months (or years) of frustration.
Welcome to the forum, you`ll find a wealth of beneficial information on here - I certainly have.
I was diagnosed recently and faced the same dilemma as your father.
When I voiced my concerns, my GP and neurologist echoed the opinion below.
Hope this helps.
There is no medical benefit to be obtained by delaying the start of treatment and there is some evidence that delaying it for too long can actually have an adverse effect in the long term.
PD sufferers decide to delay treatment for as long as possible. But if they wait too long, a higher dose of medication will be needed sooner - to control symptoms that have been steadily worsening over the years. The side effects from the higher doses of medication will occur more quickly. In the meantime, the person and the family will have endured months (or years) of frustration.
I've was dx with PD two and a half years ago and have done well by taking only Azilect 1 mg. It took me three different neurologists to find one who agreed that given my symptom was only tremor in my left hand the risk of side effects from stronger meds would outweight the potential benefits. I have been exercising regularly and take various supplements and my shaking is still very manageable. I plan to try DA's or directly Levodopa when my golf game goes downhill. So far howeverr since Dx i've lowered my handicap! Good luck and regards, Roman
Hello and thank you for your reply.
The information you have provided has helped me understand but the problem I'm going to have is giving the advice to my dad. I think he is very much insistent on not taking anything as yet. The thought of it being at the stage where the doses have to be higher because of the progression of the symptoms, worries me. I wish my dad would tell me his concerns. He still works full time which in one way is good because it's keeping him active, but I worry if he isn't telling of other problems because of the worry of losing his job. I don't know if he is scared, worried or in denial himself. I suppose another worry is you just never know how the condition will progress or when. Have you being in this situation thought about the herbal remedies? I'm just trying to help my dad in doing what he feels right rather than him thinking he might be being pushed into taking tablets off the doctor. Xx
The information you have provided has helped me understand but the problem I'm going to have is giving the advice to my dad. I think he is very much insistent on not taking anything as yet. The thought of it being at the stage where the doses have to be higher because of the progression of the symptoms, worries me. I wish my dad would tell me his concerns. He still works full time which in one way is good because it's keeping him active, but I worry if he isn't telling of other problems because of the worry of losing his job. I don't know if he is scared, worried or in denial himself. I suppose another worry is you just never know how the condition will progress or when. Have you being in this situation thought about the herbal remedies? I'm just trying to help my dad in doing what he feels right rather than him thinking he might be being pushed into taking tablets off the doctor. Xx
Hello Roman, sorry I have only just seen your reply, thank you though. I think as my dad is very independent and sees that he is coping the way he is, he doesn't feel like he needs anything. He just said that some days his shoulder is ok but others quite bad, but still doesn't take anything! I've suggested we find a physio to help with this rather than medication but it's getting him to do these things. I suppose whichever way I look at this, even with my concerns, the choice is his. Xx
hi natalie
i was dx 10yrs ago and the first 4yrs i did not take any meds my choice but my pd nurse agreed with me that i was not ready she also said it did,nt make any difference to the progression of the pd but i knew when i was ready and i did,nt have to start on a high dose because i had waited 4 yrs, i have got worse and am now finished work but am still able to do most things all the medication will do for your dad is help control the symptoms but if your dad feels he is coping without then he is the one who knows his own body better than anyone else and he will know when the time is right and if he has just been dx he will be coming to terms with it he will be scared and in denial thats maybe why he wont talk to you about it give him time and he will see its not all doom and gloom. sue.
i was dx 10yrs ago and the first 4yrs i did not take any meds my choice but my pd nurse agreed with me that i was not ready she also said it did,nt make any difference to the progression of the pd but i knew when i was ready and i did,nt have to start on a high dose because i had waited 4 yrs, i have got worse and am now finished work but am still able to do most things all the medication will do for your dad is help control the symptoms but if your dad feels he is coping without then he is the one who knows his own body better than anyone else and he will know when the time is right and if he has just been dx he will be coming to terms with it he will be scared and in denial thats maybe why he wont talk to you about it give him time and he will see its not all doom and gloom. sue.
Hi Natalie
I’ve been diagnosed around 2 years ago. Here’s my perspective on your questions:
1. Medication in the early days/years? I presume you mean l-dopa meds. If so, I’m personally of the opinion that is best to wait until symptoms justify it (because of side effects and possible long-term implications). There are a few other meds, like Azilect (rasagiline) which I understand one can take from the start (at least if you don’t experience side effects – I don’t, but some people apparently do). But on the other hand, also note that some people don’t really believe in the effectiveness of Azilect (one of my neurologists doesn’t for example) – so, not sure one really “must” take it either. In terms of non-traditional meds. Note that I suspect that for some people, PD might possibly be linked (i.e., caused or aggravated) by deficiency in iodine and/or vitamin D. I’d consider testing for them (routine tests exist) and, if your dad does show any such signs of deficiency, take the relevant supplements ASAP to get back to a “normal” level.
2. Herbal medicine. This is such a vast domain. Please be aware that it is easy to buy some herb extracts like “mucuna pruriens” which contains l-dopa (I once bought some, just to see what it looks like and it even shows the l-dopa mg dosage on the label). Also, fava beans apparently have a high concentration of l-dopa too. So, by taking this kind of stuff you’re essentially taking l-dopa. Some people argue that this is a more “natural” way of taking l-dopa and that it probably has fewer side effects. My neurologist advises against it on grounds that quality controls are a lot worse and so you take risks. I have never taken l-dopa in either form, so can’t speak for experience… but confess I do find it a bit risky, so would advise caution in this area.
There are a lot of other herbal medicines that have claimed properties that I believe might be good for PD, so (as long as you take them reasonably) I personally don’t see anything against it. I’d put in this camp, anything that has neuroprotective effects, anything against inflammation, anything against stress, and anything that generally makes your digestive system work smoothly. In my view, any of these things might help manage PD progression, so no harm in trying to do something about it. Whatever your dad does, I’d advise him to inform is nurse/consultant and get their opinion, just to make sure he doesn’t take anything that might have un-intended consequences.
3. Exercise and balanced food. You didn’t mention these, but I would encourage them too. Exercise has been proven to help delay progression of PD and I believe balanced food probably plays an important role, as the gastro-intestinal tract has been involved in PD and lots of different vitamins/nutrients play such a key a role in the bio-chemistry of dopamine.
Hope this helps and all the best for your dad,
lfs
I’ve been diagnosed around 2 years ago. Here’s my perspective on your questions:
1. Medication in the early days/years? I presume you mean l-dopa meds. If so, I’m personally of the opinion that is best to wait until symptoms justify it (because of side effects and possible long-term implications). There are a few other meds, like Azilect (rasagiline) which I understand one can take from the start (at least if you don’t experience side effects – I don’t, but some people apparently do). But on the other hand, also note that some people don’t really believe in the effectiveness of Azilect (one of my neurologists doesn’t for example) – so, not sure one really “must” take it either. In terms of non-traditional meds. Note that I suspect that for some people, PD might possibly be linked (i.e., caused or aggravated) by deficiency in iodine and/or vitamin D. I’d consider testing for them (routine tests exist) and, if your dad does show any such signs of deficiency, take the relevant supplements ASAP to get back to a “normal” level.
2. Herbal medicine. This is such a vast domain. Please be aware that it is easy to buy some herb extracts like “mucuna pruriens” which contains l-dopa (I once bought some, just to see what it looks like and it even shows the l-dopa mg dosage on the label). Also, fava beans apparently have a high concentration of l-dopa too. So, by taking this kind of stuff you’re essentially taking l-dopa. Some people argue that this is a more “natural” way of taking l-dopa and that it probably has fewer side effects. My neurologist advises against it on grounds that quality controls are a lot worse and so you take risks. I have never taken l-dopa in either form, so can’t speak for experience… but confess I do find it a bit risky, so would advise caution in this area.
There are a lot of other herbal medicines that have claimed properties that I believe might be good for PD, so (as long as you take them reasonably) I personally don’t see anything against it. I’d put in this camp, anything that has neuroprotective effects, anything against inflammation, anything against stress, and anything that generally makes your digestive system work smoothly. In my view, any of these things might help manage PD progression, so no harm in trying to do something about it. Whatever your dad does, I’d advise him to inform is nurse/consultant and get their opinion, just to make sure he doesn’t take anything that might have un-intended consequences.
3. Exercise and balanced food. You didn’t mention these, but I would encourage them too. Exercise has been proven to help delay progression of PD and I believe balanced food probably plays an important role, as the gastro-intestinal tract has been involved in PD and lots of different vitamins/nutrients play such a key a role in the bio-chemistry of dopamine.
Hope this helps and all the best for your dad,
lfs
Natalie, I understand your father's reluctance to take the PD drugs. I had similar misgivings about them and decided not to take them. I agree with much of what Ifs has written: there does seem to be some indication that Vitamin D deficiency - and a weakened liver - play a part in causing PD. I've been taking Vits C and D and other supplements. I avoided herbal medicines - they can be a bit risky - but I've had acupuncture. It's all helped and I'm feeling much better, most symptoms have disappeared and only a slight tremor remains. I had had a frozen shoulder, so I've been exercising and strengthening my shoulder, arm and hand.
There's a lot we can do to help alleviate symptoms without taking drugs that flood the brain with dopamine and cause adverse effects. In fact PD drugs become highly addictive once there is any partial recovery. For that reason, if the PD symptoms are fairly mild to start with, it's best to avoid the PD drugs altogether.
I'm new to the forum: for much more on drug-free recovery and self-help, please see my posts in 'Meet and Greet'. Encourage your father to stay positive - that's so important. Good luck!
There's a lot we can do to help alleviate symptoms without taking drugs that flood the brain with dopamine and cause adverse effects. In fact PD drugs become highly addictive once there is any partial recovery. For that reason, if the PD symptoms are fairly mild to start with, it's best to avoid the PD drugs altogether.
I'm new to the forum: for much more on drug-free recovery and self-help, please see my posts in 'Meet and Greet'. Encourage your father to stay positive - that's so important. Good luck!
,hi Natalie
Its a hard situation you are in, wanting to help your father but not actually being able to because he wont let you. i' ve been there. I personally think that he is OK not taking meds right now if he doesn't want to. Soon enough he will find things getting more difficult and he will have to reassess.
It also sounds like he talks about using alternative medicine but isn't doing anything about finding out what to take. If he really was seriously going to follow this path I would expect him to be researching it now. ( hope you don't take responsibility for that, he needs to do it)
Try not to worry, there is no cure and we just have to live day to day positively. There is nothing you can do even if he is on meds. except be supportive and show you care and you are already doing that.
Have you looked at any of the PUK literature. It is very good and you could try ordering a pack and leaving booklets around in strategic places.
He is lucky to have you, I'm sure he knows that.
Its a hard situation you are in, wanting to help your father but not actually being able to because he wont let you. i' ve been there. I personally think that he is OK not taking meds right now if he doesn't want to. Soon enough he will find things getting more difficult and he will have to reassess.
It also sounds like he talks about using alternative medicine but isn't doing anything about finding out what to take. If he really was seriously going to follow this path I would expect him to be researching it now. ( hope you don't take responsibility for that, he needs to do it)
Try not to worry, there is no cure and we just have to live day to day positively. There is nothing you can do even if he is on meds. except be supportive and show you care and you are already doing that.
Have you looked at any of the PUK literature. It is very good and you could try ordering a pack and leaving booklets around in strategic places.
He is lucky to have you, I'm sure he knows that.
Hello and thank you all for your kind words! In the time since I last posted on here, my dad has been back to his consultant for a routine check, and has decided to start taking some medicine. Unfortunately at the moment I don't know which medication this is. We did a walk in aid of Parkinson's, Sunday gone, along with my dad and another 9 members of my family! I'm hoping by my dad taking the medicine now, he is coming to terms with things and we can move forward positively!! I wish you all well and hope to speak/here off you again!!
Xx
Xx