Why we take medicines for our symptoms: the experience of people with parkinsons.
People often ask if they should begin meds. Its a hard choice and though everyone's PD is different this video shows an unmedicated man and 2years after he began drug treatment.
I feel good for the man. I think his experience is typical.
But why did it take 2 years for him to get to the improved stare?
Presently Parkinson's drugs only affect the symptoms. They are fast acting: TMAX for levodopa is about 60 minutes, THALF about 90 minutes, so you should know in days whether a new drug regimen is effective.
The thing to avoid is going to the doctor and getting a new prescription which turns out to have too low a dose and having to wait six months for the next appointment to get it increased. That is six months wasted. If the patient is unable to see the doctor every week until the medication is optimised, the doctor should prescribe in such a way as to enable the patient to increase the dose and add anti-nausea drugs, if required, without waiting months for the next appointment.
We dont know hiow long it took, but I take your point. Yes agree about flexibility in drug management either have a range of med levels prescribed or contact with doctor such as e mail to tweek doses
Who is his guy
My guess is that it probably took him so long because he let his brain and body atrophy for way to long.
I have spent a lot of time watching babies lately. They explore their world, they push their boundaries, and when they get overstimulated they cry and or fall asleep. We need to do the same to repair those connections made so many years ago.
Crying and sleeping huh? I dont find crying helps particularly, sleep does, when i can get it! 😇
Nothing beats a good cry.
a good laugh is not a bad choice
Did I miss them saying what the treatment was? I keep seeing this on Facebook and am no wiser.
There is only one brief mention of medication. If you visit their page they have other videos including dbs which some seem to think this is about but the only reference is to meds.
After two and a half years, how many tablets was he taking a day? Did he not have dyskinesia? How long will he be able to keep this up without getting dyskinesia? Has he tried doing fast walking to get to where I have been, without any side effects?
I take it you think no one should have symptoms like this because they can avoid it through fast walking? Is that correct?
Not quite that simple. It took me eight years before I was able to come off the MAO-b inhibitor. I still do the fast walking. The symptoms go as slowly as they come.
I have people who soon see an improvement in their symptoms and others who take a lot longer. We are all different. What one person calls walking fast is different to others. As you say, we are all different.
No it is not!!!! I feel sure that everybody can start to move, even if it is very slowly and build that up to a meaningful time But it requires commitment to trying t overcome the problems.
The problem is that the brain cannot communicate properly with the body. The body gets weak because we stop using it. There can be all sorts of complications attached to not using the body, which professionals should be able to sort out. But connecting the conscious brain with the body is our goal and from there we can re-build our bodies.
So only on MAOB inhibitor treatment for 8 years, a little different from meds most people here with pd are on after 8 years. In fact i havent met anyone only on this treatment after 8 years, have you?
That must tell you something!
That you dont have what I have.
That noone else has reversed symptoms
On Tuesday 30th August I was lucky enough to bump into Dr Laurie Mischley, who is a physician. She has a sniffer dog, trained to detect Pd. Her dog had to smell me twice, before sitting down touching my feet, which told Dr Mischley that I have Pd. What do yo have?
Dr Mischley the naturopathic dietitian and epidemiologist? Interesting way to prove your diagnosis.
I have read of dogs training to sniff out PD. They can predict pd before diagnosis I believe.
I have idiopathic pd confirmed with Dat scan.
That's a very good question, "Why Take Medication?" No medication is capable of reversing the symptoms of Pd. So WHY TAKE IT? Yes, some of them can temporarily hide one or two of the symptoms, but they have no effect on the progression of those symptoms. So Why take them?
How can one exercise without strength, with leg tremors on both sides ? I am willing to do it but body is very much spasming with pain.
I cannot claim that you will be able to do the walking. But I have worked with a large number of people already and some are able to immediately walk for quite a time without stopping. Others can walk for less than a minute and then have to stop. But if they were to walk for a minute and stop for a wile and then walk again for a while, they will soon be able to walk for several minutes. Then they can start the walking in earnest.
Don't be put of because you are too weak to walk for more than a few seconds. I cannot talk about the pain you mention. That culd be anywhere, muscles, joints or bones. But speak to a professional abou it.
I believe in your walking experience. I try to walk when in a lesser painful time even for just few minutes. I struggled also with neck & shoulder stiffness which is quite challenging but all energy I have is being reserved for walking or stretching.
If you do some warm-up exercises for your shoulders and back before and after your walk it should help with that problem.
People have accidents and break their backs and limbs and land up in bed for long periods of time. When they are able, they are encouraged to get up and start to learn to walk again. Do you think that they have no problems? Do you think that they just get up and walk immediately, with no effort? You are like them. You have to start from the beginning again.
When Douglas Bader lost both his legs he was determined to walk without sticks or any other device, otherwise he would never have been able to fly an airplane again, and he desperately wanted to fly again. He fell, he faltered and he battled but he won the fight and walked on two prosthetic legs for the rest of his life.
Why medication ? Because Parkinson's is not just a physical issue. If I, being 53 now, could keep my anxiety down with fast walking, then doing an hour and a half of intense exercise should have done the trick. Also I have a wall I hit and that is a hour and a half of high activity. That is a chemical thing but I also understand that 70 and 80 year old's are in a whole other classification.
When I was 58 in 1992, at the time of diagnosis, I had been going to the gym for intense work-out for an hour every day, six days of the week. It did not stop my Parkinson's from progressing, but it had been 29 years already since my first Pd symptom had shown its ugly head in 1963.
For the next two years I went to the gym for 90 minutes every day but my Pd got even worse, and at a faster rate. After two years of walking badly, sleeping badly, getting more and more worrying symptoms, I decided that as the exercise was obviously not helping me, I would give it up. So, I stopped going to the gym. My late wife had been doing fast walking for two and a half years and had lost 14 kilograms in weight and had come off her blood pressure pills and also her anti-depressant pills. She begged me to try the fast walking program. I told her that the 3 hours a week she walked could not do better than the nine hours I had been spending in the gym, but she did did not give up nagging me to try it. What had I got to lose?
I started the fast walking three months after stopping going to the gym. When I started the fast walking it took me over ten and a half minutes to walk one kilometre. After only four months, that tim
e had come down to less than nine minutes, a huge improvement in my fitness level. After four years, nobody would ever have known that I have Pd. After eight years I had the confidence to come off my Pd medication and have been off it ever since.
I had been doing TOO MUCH EXERCISE! Our muscles need a day to recover from vigorous exercise.
You draw your own conclusions!
I agree with you on the too much exercise. You look at Parkinson's as a physical problem. Have you suffered through any mental issues ?
I don't regard Pd as merely a physical problem! In my book I list over 40 symptoms, some of which may by manifestations of other problems. Many of the problems are nothing to do with movement.
When you say mental issues, I assume you don't mean mentally unbalanced. Here are a few of my 'mental problems':
1. Mixing up my left and right side. I invariably turn left, when I want to turn right.
3. Inability to concentrate
4. Inability to handle conflict situations
5. Inability to multi-task. (Maybe it's because I'm a man)
7. Lack of awareness
8. Mood swings
9. Social withdrawal
10. Speech problems
11. Uncontrolled emotional ocurrences
There are probably more.
Too much exercise may well have been the problem. The best amount of exercise seems to be around 50 minutes a day intense and possibly another 40 minutes moderate. Beyond that and you start to get shortages of minerals - magnesium for instance being an obvious one. Fast walking may be the thing, but running and cycling may also suffice.
From your reply you must be 84 years old now and have a vast source of info on Pd. I'm recently diagnosed at 64 and it has rocked my world. I'm depressed over the uncertainty of my future and how to cope.
How to cope?
if you are wondering how you will cope - trust me, you will. The first year is a rollercoaster ride coming to terms with the diagnosis and treatment. Be kind to yourself and let yourself grieve but also remind yourself that 7-10 million others in the world have pd and you probably barely noticed any of them in the past but we are everywhere.
1: treat everything you read on line with a healthy dose of skepticism until you have supporting evidence
2: remember anyone can claim anything, and if they say it loud enough and confidently enough they get followers, thats not evidence, thats followers (who want to believe)
3: you get extra brownie points for touting conspiracy theories especially about ‘big pharma’.
On being diagnosed - a short inspiring video
Yay! Serenity is top dog around here! You made a timely comment trying to make a good point and almost save this Hikoi string from being completely hijacked by Mr. Pepper. High praise for diplomacy. I have none of that. Of course it didn't stop hm but you get credit for good content and a righteous effort.
SO, JP likens himself and his ability to mitigate the symptoms of Essential Tremor (he has never been credibly diagnosed with PD) via daily walks, with the courageous struggles of someone like Douglas Bader? Excuse me while I puke...
When you say 'credibly diagnosed' do you mean that four neurologists, who have diagnosed me with Pd are not credible? While you are puking, ask yourself why? I used Douglas Bader as an example of someone who had every reason to believe that he would never walk without some form of 'aid'. He managed to do that with prosthetics. We still have our legs,and should find it a lot easier than he did.
Are you 53? I am 51. Change what you're putting in your mouth. It will help. Lectin-Avoidance diet. Stay away from meds as long as possible. Try everything else first. I have had significant anxiety, lack of energy, social withdrawal, emotional outbursts, you name it. My primary Dr. diagnosed depression for the last 10 years. I knew it was something else. I refused all meds. The recent change in my diet has given me my life back. Check it out.
No meds at all? Did u try gut healing w/ probiotics? Looking into it w/ this group in FB, Exposing the lies : candida, weaponizing Fungus, mainstreaming mutancy. Very interesting.
What symptoms do u have? If u don't take meds or herbs, maybe your PD is mild non progressive ?
No meds, just supplements (many). I was taking probiotic capsules and have switched to prebiotics and eating fermented food with each meal instead. I had anxiety, very low energy, social withdrawal, foot drag, insomnia, dystonia, balance issues, runny nose, irritability, increased startle reflex, extreme feelings of overwhelm leading to suicidal thoughts. I fell off the food wagon last week a little and my symptoms came back some. I am right back on the keto/auto-immune/anti-inflammation diet (Wahl protocol, Bredesen, Plant Paradox combo) to regain control. Dystonia sucks! I am adding coffee enemas this week to help with detox. We shall see if it is a benefit! I do agree that if your symptoms prevent you from living your life, you should take meds. I am absolutely open to taking them when I have exhausted all other options and my quality of life is significantly impacted. There is no shame in either choice. PD is an individual disease and it is up to the individual to make their own choices with what works for them. I was just telling my husband how lucky I am as I LOVE root veggies, cabbage, brussel sprouts, etc so it is easier for me to eat such a restricted diet. A sweet potato with sauerkraut for dinner is just fab! I know it is difficult for others to stick to it as much as I am...although I do fall off the wagon every now and then. I am only human.
Thanks for sharing! Experimentingon probiotics now for 2 months w/ no meds. But stayed indoors mostly in bed still. Eating clean diet no gluten no dairy no sugar etc
fantastic! diet and supplements do help a tremendous amount for me.
Why take medication says JP and some like and agree with him. We all know meds dont cure pd no one has ever claimed they did so I dont understand why this gets repeated. We take meds to make the symptoms bearable. If your symptoms dont require meds yet dont take them, but if they do why deprive yourself? You should not feel guilty or be made to feel guilty and its not giving in.
I wonder if those who tell us not to take meds or who dont want to take any would also feel and speak the same way about diabetes. "Dont take insulin because it does not cure you and further on you will have problems."
The purpose of this thread was to show how hard life can be for people with pd, and so why people take meds, - for quality of life. We should never be made to feel we have failed, that if we had tried harder it would be different. We all do our best against a very difficult opponent.
If you believe that you can live without meds, and that the natural progression will not happen because you can arrest and reverse it and slowly get better then we look forward to hearing your progress, but you havent failed if you find the going too hard and you do eventually need the meds like the rest of us.
That is a facile argument, comparing diabetes with Pd. What has diabetes got to do with it.
I make the statement about medication not doing anything to stop the progression of Pd every time I speak on the subject because not everybody reads every post and I want everybody to be aware of this fact.
Many patients believe that they HAVE TO TAKE THEIR PD MEDICATION,REGARDLESS OF WHETHER IT HIDES ANY OF THE SYMPTOMS OR NOT! Some doctors appear to want to make people take the Pd medication regardless of what effect it has on the patient.
Facile to you it may be but i need meds every three hours to replace the dopamine i cannot produce, just as diabetics need regular insulin to replace the insulin they cannot produce.
I know you do not understand this as you have never experienced it. It takes 6 weeks for your movement symptoms to reappear if you stop walking.
As i have said before your condition is not the same as most on this board.
I said that your argument is facile, not your need for medication. I understand your need for medication and where you would be without it.
What I am hammering on about is the need to do more than take medication, if we want to get better!
You said it was facile to compare diabetes with PD. I disagreed.
I agree there is need for more than meds but that was not in question and was not in the substance of your post.
The only thing that makes it possible for me to exercise is the meds. I love to do the fast walking but I have severe dystonia in my back and so have to take my meds before I can do it.
It's a catch 22, exercise to feel better but need meds to exercise.
Pam Fraker > Why no mention of treatment? Scientific trials documenting efficacy of treatment etc. Either do the job or don't report it out. Parkinson's folks deserve better than this sloppy news!
I dont know what you mean here Roy??
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