First nurse appointment: First pd nurse... - Parkinson's Movement

Parkinson's Movement

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First nurse appointment

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First pd nurse appointment yesterday, she wants me to go on Madopar, still not sure as I am in the early stages of pd.

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I think I already wrote that I probably went on Madopar too soon. But I have stayed with it and it has certainly suppressed my tremor quite well (takes several weeks to get that effect), and also I think it has affected my mood in a good way - I feel calmer and less anxious. But I have no proof the latter is due to the Madopar! Maybe I will put a separate comment/query about that on the website. There still seems to be mixed opinions on whether early medication should be delayed, or not.

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I take Madopar, I have been on it for just under two half years. I was diagnosed in Spring 2009. I felt like my old self when I started taking it, it was brilliant at stopping my tremor. However, in the last six months my ‘Off times’ got longer and longer, so flitted between Wonder Woman and someone who moved like a snail who was also in pain. They say medication keeps working, however, the symptoms will worsen and that causes the problems! I was led to believe that Levodopa would restore my quality of life for five to ten years, however, the reality is that it can for some people be a lot less time than that as in my case. The next step is an add on drug and so on. Everyone has a unique journey with Parkinson’s, in my case I am glad I waited several years before taking Madopar because of my outcome, hindsight is a wonderful thing, I just went with my instincts and I am glad I did. Wishing you well.

Hidden
Hidden in reply to Hidden

Thanks, I am not to bad at the moment, jaw tremor and slight finger and hand tremor and a bit slow moving about. I Will have to think hard about it.

Hikoi
Hikoi in reply to Hidden

They say the first 5 years or more are the honeymoon period of he disease. That is medication usually works well and you just get on with life. We then move into a more complex phase with a more complicated drug regime and the disease interferes in our lives more.

Putting off meds doesnt mean you get to use them longer as lovepug found. So if you start now you may get 5 good years on minimal meds, if you wait 2 years you may have only 3 good years on minimal meds. Whatever you decide how things progress is less to do with medication and more to do with your particular type of pd.

The meds dont change the progress of pd they just make it easier to function.

Having said that I would balance it with how much symptoms are interfering, making it difficult to function etc and only start then. My first neuro said he preferred to undertreat than over treat and I agree with him

I know it seems a big hurdle because its likely to be the beginning of meds for life. You should take all the time you need and not feel pressured.

Hidden
Hidden in reply to Hikoi

Thank you for your reply Hikoi

ryanJames1
ryanJames1 in reply to Hidden

Hi

I have had PD for at least 5 years no meds to date

No on/off just constant slight decline in tremor but also have lots of pluses!

Exercise using a vibration platform love it has increased my energy two fold

I am on NAC and organic Mucuna

No pain or depression

Slight anxiety re embarrassing at times

But all in all pretty ok keeping the glass half full

Hikoi
Hikoi in reply to ryanJames1

Thats all good ryan. Its a moot point but I think mucuna is a medicine, its L Dopa, just not refined and in a tablet llke sinemet.

ryanJames1
ryanJames1 in reply to Hikoi

I'm just giving my personal experience I feel the side effects of man made meds would be worse than what I live with now but I am tremor dominant and can only speak for me

Hikoi
Hikoi in reply to ryanJames1

Ryan is it 5 years since you were diagnosed or 5 years you estimate from symptoms ?

I generally take time from diagnosis because it is difficult to tell when it all started and there are some fanciful ideas about what are pd symptoms by some posters.

researchers say we have had pd 10 years and some say even longer by the time we get diagnosed. One i heard said 20 yrs before symptoms lead to diagnosis. i do add on years when the doctor wrongly diagnoses they often say its essential tremor if they are not confident of the diagnosis..

Interested in your vibration platform. I used one at the gym before diagnosis. Was it expensive?

ryanJames1
ryanJames1 in reply to Hikoi

Well that's true as even Doctors get the diagnosis wrong at times my GP thought ET as apart from tremor in my left arm and hand I was well

As if broken my left wrist I put weakness and slower movement down to that

At time of diagnosis nearly 3 years ago I had asymmetric tremor left side and Dystonia

Dystonia has improved tremor mostly manageable has progressed just recently to right hand but only early stages so not inconvenient yet

No interest in trying Sinemet at this stage I am fit,active and well

Can be frustrating as we all know but at this stage nothing to convince me I would have better health on it

Hikoi
Hikoi in reply to ryanJames1

Glad you are doing so well.

Yes at 3 yrs I was travelling the world and no obvious symptoms.

ryanJames1
ryanJames1 in reply to Hikoi

Thank you

Yes it's a challenging journey for us all

But I know if my PD nurse visited me today I am much improved to when she visited me 3 years ago

That's with diet , supplements and exercise

I'm not able to stop the progression

Just manage each stage as it comes

Thank you for your interest

Yes I guess Mucuna is a herbal medicine unlike sinemet which I believe is synthetic with side effects

I have been on Madopa for about 3 years now but have had very severe nausea the las 6 months , my GP has tested me for everything and I am waiting to see the gastroollogistt as a last resort but I think I have solved the problem myself! The Madopa!, this nausea seems to have started at the same time I increased the dose to 4 a day. I do take a lot of tablets that mention nausea has a side effect but I have been taking them for years. I have reduced my Madopa to 2 a day and the nausea has almost disappeared!!!

Don't feel obliged to accept mainstream meds. My nurse was quite up front about the long term degeneration I could expect. 3 years on she is amazed at my condition, and admits that she could not match that with her meds.

There are many alternatives out there which you can investigate. Amino Acid, MMS, LDN, Mannitol, Cannabis, Nutrition, etc...etc. Most claim at least a slowing of progression. You have time, use it wisely.

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