Control progression of PD


#1
Hi, Guess who, yes me again,

I just had to post this its been bugging me all day. I was for some reason under the impression that the medication used for PD, actually also slowed down it's progression. I really don't know why this has stuck in my mind, I obviously must of misread something a long the way. I am doing as I am sure you have all done before me (searching for any possible help or info on PD) that's when I realised I have got it wrong, and the meds do not slow down progression, I am quite devastated by finding this out, comes as a bit of a blow. Don't know what I was thinking even told my OH that this was the case. Love holsxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

#2
I to have got things muddled up where the medicine is concerned, and find it hard to keep cheerful for my family. but I try to look on the positive side. but it took a long time, now I try to live for today and am planning all the thins I was goin to do when I retire, but with PD and the retirement aged going up by 7 years I mite not be able to do them them. I now read up on any med I am offered and decide if and when I whant to take them and who knows perhaps one day they will get the breakthrough we all long for. Today I am going to stay with my family and help my Mum look after my dad who has Alzymers. I know which one I would rather have. sorry about the spelling tabs not kicked in yet.:fearful:

#3
I to have got things muddled up where the medicine is concerned, and find it hard to keep cheerful for my family. but I try to look on the positive side. but it took a long time, now I try to live for today and am planning all the thins I was goin to do when I retire, but with PD and the retirement aged going up by 7 years I mite not be able to do them them. I now read up on any med I am offered and decide if and when I whant to take them and who knows perhaps one day they will get the breakthrough we all long for. Today I am going to stay with my family and help my Mum look after my dad who has Alzymers. I know which one I would rather have. sorry about the spelling tabs not kicked in yet.:fearful:

#4
hi holly,

you are not alone in thinking that the meds slow the disease down i wish they did but they can if you get the right combo of meds control the symptoms quite well for good period of time for some pwp but its a case of trial and error to get the right meds everyone has a different reaction to different meds so what might be right for one may not suit another sorry i can,t tell that you were right about the slowing down pd but the thought that one day there might be a cure keeps us going, sue.

#5
Hi hollytree29 and cocney girl,
I am on a medication,have been now for 3 years.This medication is called Azilect(known also as Rasagiline).This is meant to slow down the progression of Parkinsons.This maybe,is the medication you are confused with.It doesn't suit everyone,due to some of the side effects and there is great debate as to its effectiveness.It would also be impossible for me to state catergorically whether it has"done what it says on the tin"for me.
The other parkinsons meds,whether Dopamine Agonists or Levodopa based, reduce the symptoms to a degree that allow movement or function.This can also vary greatly from person to person.What suits one may not suit another.If left un medicated,the the decline in health and loss of function would more significant.So in effect,all medication,in its own way I suppose,does slow the progression down in an indirect way.For example,if medication is not taken,then over the course of time,a person may stiffen up,losing a range of moment,sometimes impossible to regain.This is lessened by the meds,allowing for physical activity otherwise implausible without.Thus slowing down progression through allowing and enhancing continual normal function.Whereas the Azilect is specifically aimed at slowing down progression,yet in itself,does only that,it needs the other meds to do the job they do.Without them,it would not be effective on its own.
A more scientific analysis can be found on research.I hope however this partly answers your question,from my "personal experience" point of view.
All the best
Titan

#6
Hi, thanks Titan for such a clear explanation, and good sound advice. Maybe Azilect is something to think about, not that my OH has been offered it, probably early days yet? or maybe as the Neuro said he was middleling, that he is more advanced. That's something else I don't understand, I have read that there are 5 stages of PD, and when the Neuro says my OH is middleling that's not very clear is it? my husbands symptoms became noticeable to me 12 months ago, so maybe it was coming on even earlier then that? so I am thinking that middleling is stage 3/4? I know he has all the problems with his right hand side. When the Neuro had drawn a spiraling circle, then asked my husband to copy it with his right hand, it was so minute and tight compared to the Neuro's circle, he asked my OH to do it with his left hand, and this too, was minute and tight, so whether this implies the other side has started to have problems I am not sure, strange isn't it, we never seem to ask all the questions whizzing through are minds, regards love Hols x

#7
hi titan - you are on the meds i have been prescribed 1mg ragasiline - could you tell me what the side effcts were and how the have helped .... did they make you feel ill when you started on them - have not started mine yet

#8
Hi hollytree29 and Moonandstars,
Hollytree29,If your OH is classed as middleing,I would say that he should probably be on medication already.However,we all differ.
From personal experience,Azilect(rasagiline)was the First med I was introduced to.1mg is the only dosage offered(trails seemed to show no differance in results on inreased amounts).One per day,generally in the morning.MANY,and I mean MANY!,just can,t take to it.Alarmingly,especially for women,One common problem when taking it appears to be hair loss.
Although I have never had any side effects on Azilect on its own or with with pd meds.However,caution must be taken with it with other drugs.With it being a M A O I(Monoamine Oxidase Inhibitor) catorgorised medication,care must be taken,in fact caution,specifically with Anti-depressants,especially those from the M A O I group.
I took azilect for a few weeks,to make sure it was compatable/agreeable with me,before introduction of Mirapexin(pramipexole),a DA medication.I felt mild results immediately on its own,but on addition of the Mirapexin,the results were significant.Many pwp however,have Azilect added later on,maybe and usually to give an added kick(boost) to the meds they are already on.
Hollytree29,I am also right side affected.The general theme on advancement through the stages(which only as a guide,can take many and varying years).Parkinsons will eventually,as a rule progress to both sides.
As for questions to the Neuro,it is good to have a list written in advance.It is hard to" think on your feet" during an appointment.In your case holllytree29,I am pleased to see that you are so involved in the treatment and appointments with your OH.This is more important than you imagine,especially were the medication is concerned.I do not say this lightly.
To answer further in reply to the question posed by moonandstars.I have been lucky.The Azilect(rasagiline)has never made me feel ill.All susequent meds have been the same.If however you are ill,and is usually the case anyway as a precautionary measure,you should be prescribed Domperidone(anti-sickness tabs),perhaps 10mg.
As to Azilect or other pd meds helping me,the answer of course is yes.However,do keep an eye on the side effects,especially OCD's(now touted as ICD's).Now that is another story.You can find out more about that issue on other threads on this and other sites.
I hope this helps
Keep safe
Titan

#9
Thanks Titan, that explains a lot. My husband is on meds, but has not been for long. His GP gave him the lowest dose of Sinemet which he took 3 a day for 2 weeks whilst waiting to see Neuro, then Neuro dx him with PD said it was middling and doubled the dose, all very early days. The Neuro said he would hope to have him back to his old self well 95% but it would take a good few months or a year. I have notice he is sleeping well since the high dose, but I have also noticed his tremor is more active. We see the Neuro in April, to see how he's doing by which time he will of been on the Sinemet plus about 6 weeks. We have a holiday booked and paid for for May, so Neuro wants to see how he is before going abroad, (and if its ok for him to do so)?
he said it shouldn't be a problem, but I take that with a pinch of salt, my OH certainly could not travel the way he is at the moment, and I don't know if another 6 weeks will make much difference? Its so sad some days he is so positive, and actually looks forward to going away, and next thing he worries himself silly, that he can't go on a plane, shaking and everyone looking at him, and it's all off again, then he says we will be fine, but will it? I notice how ratty he is past few days, all part and part of the PD I am thinking, got to keep him positive, thanks for listening Titan and hope I have not bent your eye to much blarting on, take care, love holsx

#10
Dear hollytree29 and all,

My understanding is that none of the normal PD meds slow-down the progression of PD (not even Azilect). But I personally have hope that a few other things might help.

My understanding is that the L-dopa meds (Sinemet, Madopar, Parcopa, Duodopa, Stalevo, etc) essentially just give our neurons more “fuel” to create more dopamine (L-dopa is the main ingredient our brains use to make dopamine)… and after a few years they apparently become less effective. The dopamine agonists (Apokyn, Parlodel, Dostinex, Cabaser, Mirapex, Requip, Neupro, etc) give our brains stuff that resembles dopamine… and after a while apparently also become less effective. The MAO-inhibitors (Rasagiline/Azilect) make our brains waste less of whatever little dopamine they have…and the good news is that the effect doesn’t seem to wear-down. None of these prevent our brains from producing less and less dopamine as time goes by but they are nevertheless great in helping us living better with whatever little dopamine we naturally have left. In my case, for the time being, from the list above I’m only taking Azilect (my symptoms are still light).

Since I was DX some 20 months ago, I’ve been looking for what is the cause of my PD (in the hope it gives me insight on how to manage it better) and generally on how to delay progression. I didn't find any breakthrough solutions, but have zoomed in on some ideas that give me some hope. Just in case you might find some of it helpful, here's my top 5 (in no particular order):

1. Exercise helps. Exercise is the only one thing that seems to be scientifically proven to help delay progression (at least in animals) and I find it works well for me. It’s unclear if you need to run marathons or just walk for 5 mins every day (and it probably depends on your age and overall physical condition). My own bet is that it’s good to focus both on endurance as well as on reflexes.

2. Some vitamins and other supplements might help. In my case, I seem to have a deficiency in Vit D and in Iodine. Both have been associated with PD, so I’m now taking supplements (don’t take supplements of these if you don't know that you are deficient as too much of it can be harmful). Some studies suggest that Vit C, Vit E, and CoQ10 are neuro-protective and delay progression (though others suggest they don't). As they don't seem to have much drawbacks and just in case they do work I’m also taking supplements of them. My nutricionist also claims that pomegranate is a strong neuro-protective – so I’m taking some highly concentrated version of that stuff too just in case.

3. Inflammation may play a key role. PD has been linked with inflammation, though it’s unclear which one causes the other. My blood tests show various small signs of inflammation. I suspect there’s a good chance that inflammation may either cause or at least accelerate PD. So, I’m trying to reduce my inflammation. I’ve been taking an anti-inflammatory food complement suggested by my nutricionist and my recent blood test results show a bit of an improvement in my inflammation indicators. I also suspect that my inflammation is somehow linked to my gastric system, so have been shifting a bit my diet to eat a bit less sugars (and less potatoes, rice, pasta, etc). I have no way of telling if that really helps with PD or not, so please don’t just cut sugar, potatoes, rice, pasta from your diet after reading this – there are negatives of doing that (e.g., if you replace them with the wrong stuff or if you just starve yourself). And please also don’t just start taking anti-inflammatory meds without being followed by a doctor. Some of that stuff can be bad and/or might interact badly with some PD meds.

4. Healthier food might help. I’m not sure what’s the exact link with food and PD, but somehow I feel that my digestive system plays a role in this, so I’m generally trying to eat a bit more healthily than before.

5. Reduced stress helps too. It seems clear that stress accelerates PD, so reducing stress must be good. This, however, is a lot easier said than done to me.

All the best,

lfs

#11
Hi Holly bush,

I have taken a few different drugs for my PD as I have difficulties with tolerating them, making me very nauseous, fluey, hallucinations, sleep paralysis etc etc.

I can only tolerate a very small dose of Requip XL (6mg) a day. Because of this my neurologist added Azilect and it has definitely made a difference. I have had no trouble with side effects at all.

A the other respondents have said, we all react differently to these drugs and it is a bit of a 'suck it and see'.

My Neuro is of the view that I should stay off the leva-dopa meds for as long as possible and 2 years on from diagnosis, I am doing ok.

Caroline
x