My diagonise

[Anthonyian]

,I was most concerned about the tremor in my right leg val

[JohnPepper]

Hi Anthonyian. I am not a doctor, but would willingly help you if I can. Have you been diagnosed with Parkinson's disease?

John

[Anthonyian in reply to JohnPepper]

Hi John I was diagonised with Parkinson's 2 years ago when I was admitted to hospital when I fell and broke my hip iPad been seen by GP 2 years previous for tremors and aching legs I had my thyroid removed.1have my medication changed 4 week ago and the aches in my legs are worse also pins and needles I am now on 4 times a day madapar and once a day 1.83mg of premipexole. Thanks for your reply.

[JohnPepper in reply to Anthonyian]

Hi Anthonyian. I am not a doctor, as I keep saying. There is one thing that is common sense and that is, If the medication does not do us any good, then stop taking it. It depends how long you have been on the medication, but there is always a way. We all have to realize that none of the medication slows down or in any way interferes with the progression of Pd. So, whether you take the medication or not the Pd will still get slowly worse. The only way I know that has been proven to slow down Pd is exercise, You can read all about it in other blogs on this site.

John

[soup in reply to JohnPepper]

John, you are not a doctor, as you keep saying, yet you suggest people stop taking their medication! This is a most dangerous suggestion as sudden cessation can cause life threatening rebounds.

If you insist on this line of advice at least have the courtesy to familiarise yourself with the dangers of dopamine agonist withdrawal syndrome and neuroleptic malignant syndrome and temper your advice to fit these conditions.

[JohnPepper in reply to soup]

Hi soup. I must apologize for not having said, in that instance, that this must be done through the doctor. I do normally say this. The problem seems to be that doctors don't always take note of what the patient is saying. If the medication does not work, or the side effects are unacceptable, the patient has a right to ask for a change to be made. I have heard of many doctors taking patients off one medication and replacing it with a totally different type of medication, so I must assume that patients can come off, without serious results.

My point is that patients should question their medications, if they don't work!

John

[soup in reply to JohnPepper]

Thank you for clarifying that John. Is there any reason why people on medication can't benefit from exercise and why is it so important to come off the meds?

[JohnPepper in reply to soup]

Hi soup. There is no reason why people on meds cannot exercise! I have found, over many years of talking to patients, that people who have been on meds for quite a while appear to be very unwilling, or maybe unable. to commit themselves to energetic exercise. I cannot even guess why!

If exercise produces GDNF and that GDNF repairs more and more damaged brain cells, then we should be able to reduce the L-Dopa medication. If we stay on the same dose we will land up with too much dopamine, which causes dyskinesia. I wonder what advice the patient will receive then?

John

[soup in reply to JohnPepper]

Thank you. I suspect those people who have been on meds for years have quite advanced Parkinson's and don't feel they have the health and wherewithal to exercise.

I know that exercise brings it's own rewards of wellbeing and energy but it is like trying to tell a drowning man to drink more.

[JohnPepper in reply to soup]

Hi soup. Yes! It is exactly that. Do you have any tips for me to persuade other Pd sufferers to do exercise?

Kind regards

John

[soup in reply to JohnPepper]

None. There is none. The best we can do here is to stage some interesting sessions sampling active hobbies and hope the the apathy can be overcome and that they progress that way. There is much research documenting the symptomatice relief of motor symptoms through exercise of all kinds.

I await a study in humans showing improved dopamine production and neuroprotection though.

[JohnPepper in reply to soup]

Hi Soup. Studies have been done on humans with Pd. Here are 3 websites on the subject. Here is part of the summary of the 1st website:

In this article we highlight findings from both animal and human exercise studies that provide insight into brain changes of the basal ganglia and its related circuitry and that support potentially key parameters of exercise that may lead to long-term benefit and disease modification in PD. here is the website:

ncbi.nlm.nih.gov/pmc/articl...

The other two websites are:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

It is heavy reading but they answer your need.

Kind regards

John

[Hikoi in reply to soup]

I think exercise is an essential part of staying well and would be pleased if it is proven neuro protective. So far there has been only one human study so early days yet.

This is an overview of the current research on Exercise and Parkinsons

parkinsonassociation.org/wp...

I found this study interesting as it was an older age group and all had been diagnosed 3+ years

Parkinson’s Disease and Forced Exercise: A Preliminary Study

"Prior reports of forced exercise as a benefit to persons with Parkinson’s disease are intriguing, but this study failed to show significant treatment effects ....."

hindawi.com/journals/rerp/2...

[Anthonyian in reply to JohnPepper]

Hi John thanks for your reply I have ordered your book yesterday I look forward to reading it .I have been going to exercise class for people with parkinsons and aqua fit once a week and try to walk everyday.

[Anthonyian in reply to JohnPepper]

Hi John thanks for your reply I have ordered your book yesterday I look forward to reading it .I have been going to exercise class for people with parkinsons and aqua fit once a week and try to walk everyday.

[JohnPepper in reply to Anthonyian]

Hi Anthonyian. I am pleased to hear that you are doing exercise and you are walking every day. I mention often, that we should not walk hard every day. If you are not walking as hard as you can, then you are not going to get any benefit for your Pd out of it. You should walk hard every second day, which gives your muscles the chance to recover properly. There is no evidence that other forms of exercise have any beneficial effects on Pd, but all exercise does you good.

Kind regards

John

[Anthonyian in reply to JohnPepper]

Hi John thanks for your reply when you say hard walking every other day do you mean fast walking thanks anthonyian

[JohnPepper in reply to Anthonyian]

Hi Anthonyian. Yes that is exactly what I mean!

John

[scottyt in reply to JohnPepper]

John, What do you think of Cannabis therapy?

[JohnPepper in reply to scottyt]

Hi scottyt. I can't answer that question because I have never tried it. if there is GENUINELY no other way of getting relief from pain then you are left with no option but to go that possible route. However! That route has serious consequences, regardless of what some of its proponents claim. You have to make a decision and that should not be based on anybody else's opinion. It is your decision!

Kind regards

John

[scottyt in reply to JohnPepper]

What are in your opinion the serious consequences of imbibing in cannabis as therapy for PD? My opinion on this subject is well documented on this blog and I believe in my heart that it is truly a miracle therapy. Thank you for your thoughts.

[JohnPepper in reply to scottyt]

Hi scottyt. I think you are playing with fire! It is your choice and your decision to make.

John

[scottyt in reply to JohnPepper]

"Playing with fire'' Now thats an overstatement if I ever saw one but I respect your opinion because darn it you are entitled to whatever you want to believe just as I am. Good day.

[PatV]

Make sure your thyroid levels T2 and T3? are gpod. low thyroid exacerbates PD symptoms. I don't have tremor so can't speak to that but had thyroid cancer and pd escalated same year.