Now drug free


#1

As mentioned on the forum elsewhere I have taken myself very slowly off of my meds.
I have been free for three days.
I’ll report in later


#2

Hi @Hubby,

I’m not sure if I mentioned this before, however, please speak to your GP or Parkinson’s nurse about this to ensure you’re making the best decision for your health.

Best wishes,
Reah


#3

An honest report is that it hasn’t been easy. I am not feeling great.
Losing the Mirapexin and Azilect seemed to improve things but coming off the sinemet has left me weak and tired
Hubby


#4

Hi @Hubby,

This sounds really concerning. Not taking your medication is a huge risk and can have a profound affect on your health and overall wellbeing. Given that you are not feeling great, I think you should speak to your GP about this as soon as possible.

Although you are based in Spain, you can still give our helpline a call for more support on this on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk

Please keep us posted on this.

Best wishes,
Reah


#5

Had a much better day yesterday.
Is sinemet addictive?
For three days I felt like I was having a kind of comedown.
I have never been able to contact the helpline.


#6

Yesterday was my grandson’s second birthday. I felt under pressure to “perform” over a five hour period. I would give myself five out of ten. I didn’t cope well at all. I got home and had a “dark” period for about two hours.
As usual, aided by some playtime with my grandson I pulled out of the dark period.
Of, course over the next 20 years or so I hope to have remaining my grandson won’t always be around.


#7

Hi Hubby,

Have you tried contacting our helpline via email? Please try contacting us at hello@parkinsons.org.uk.

Best wishes,
Reah


#8

I will do that Reah.
The more I experience this affliction the more I believe that although there are certain similarities that can’t be escaped from, like insomnia, fatigue and bladder weakness. Everybody has their own personal symptoms, which if treated personally with time, compassion and knowledge could make the individuals life much more tolerable.
What actually seems to happen is that we are herded like sheep into one of a number of big pens containing a concoction of drugs.
If one pen doesn’t suit, then after a period, sometimes months, you are herded into another pen containing a different mixture of chemicals.
I have not encouraged anybody to do what I have done. I have been honest and it’s far too early to know if it will be a long term success. However,people are saying that they are seeing a change for the better. Although I still have symptoms, and I still seem to have this gloomy period every day, generally I am brighter, I have more energy and I’m sleeping better.
My head is not fuzzy all of the time and I don’t feel like a zombie.
I haven’t beaten parkinsons but I’m holding my own.
Hubby


#9

Can’t disagree with what you say here Hubby, everyone is an individual and drugs are not always the answer for PD or anything else. My husband hasn’t started medication yet, finally diagnosed 4 months ago although symptoms started 4+ years ago and first consulted a doc about them 18 months ago. He is basically ‘ok’ with bad times thrown in unpredictably and catching us both out. Impossible to know if drugs would change the balance for better or worse. I wish you well, look after yourself.

Personally, I would like more focus on a better and more timely diagnositic service rather than the inhuman, chaotic system many of us are subjected to at present. It helps enormously knowing what we’re dealing with, now we can work out how best to do it for us.


#10

Thanks mountain air.
Just refuse to be pushed.
I believe that the people around the sufferer are best qualified to detect changes.
Of course most won’t be able to tell if they are usual or not because parkinson’s does change people both physically and mentally.
Trust your instincts and react to what you are seeing and hearing. Not to what you want to see and hear.
We parkies are very good at hiding things.
Best regards
Hubby.


#11

You could be my ‘hubby’ reading that! Similarities as well as differences between individual parkies - which ironically spell-check wants to change to parties! :slightly_smiling_face:


#12

It’s seldom a party!!

My life has changed beyond recognition.
I’m going to get the best out of it though.
H.