Do PWP's find that they HAVE to take meds in order to be strong enough to really exercise etc and then ditch the meds???

[ramotswe]

I'm finding it harder and harder to see progress in my walking and movement generally. In fact I'm slower than I was a month ago. Good days and bad days I get but the trend is backwards. Even typing this is strenuous! I would love some feedback. Thankyou all.

[MBAnderson]

I can't offer an elixir. Some, who are super motivated and super disciplined manage to stall their progression & a precious few feel better than pre-diagnosis -- for awhile. Maybe for a few years, but still, it progresses. The best I can offer is to work on your attitude, i.e., how you feel about being a PWP. I find how I think about myself and my health matters more than my diet, exercise and lifestyle. Getting to total acceptance is the best I can do for myself -- and I doubt anyone gets to total acceptance.

PD is the sh*ts.

[ramotswe in reply to MBAnderson]

Wise words as usual. Acceptance drives out the fear etc but there's always the niggling feeling 'I can beat this beat this b*****r'. Taking the meds and doing something creative instead of thinking, eating, exercising PD is surely better - but I'm not quite ready. (Except today as Istruggle to type!)To be continued ...

🤔

[Hidden]

If you are like me, the meds will allow you to move normally (including for exercise and typing).

If you then ditch the meds, you will be impaired again...

[jimcaster in reply to Hidden]

I have the exact same experience.

[ramotswe in reply to Hidden]

That's clear. Thankyou Levod

[johntPM]

ramotswe, Getting the most out of your medication, particularly levodopa, can make a large difference to your quality of life. How long since your diagnosis are you? What is your drug regimen?John

[ramotswe in reply to johntPM]

John. No PD meds, just Apixaban for heart. Short history -diagnosed 'familial' tremor 2014, stroke 2016 - tremor disappears - kept moving and exercising - back to normal, 2019heart failure and sudden onset of LH tremor, heart op, new valves, bypass - so far so good! Some 'morbidity' lovely word! induced by hospital stay - rightside a bit weak, right hand a bit stiff and ICU acquired ear dermatitis annoying. Sorry - that looks like too much information.

[johntPM in reply to ramotswe]

ramotswe, judging by your reply, am I right in saying that you don't have a PD diagnosis? An illness without a diagnosis of PD is nevertheless an illness and warrants a response. But, it falls outside my experience. So, I have nothing to add.

[park_bear]

Meds allow effective exercise. Cannot ditch the meds, but happy I have not had to increase them over the last four years.

[ramotswe in reply to park_bear]

That's really encouraging park bear. Thank you.

[JohnPepper]

If you start a fast walking program and as you get better you can start to reduce your medication. It is a lengthy process but at least you are going in the right direction,.

I have been Pd medication-free since 2002. If you give me your email address I will send you my videos and some important information that will help you get better, at no cost.

[ramotswe in reply to JohnPepper]

I would be delighted to have that. This will find me (reassembled of course) - patricia at d heaf dot plus dot com

[JohnPepper in reply to ramotswe]

It has been sent this morning.

[ramotswe in reply to JohnPepper]

no sign yet. Fingers crossed!

[JohnPepper in reply to ramotswe]

Keep me informed please

[ramotswe in reply to JohnPepper]

Still no sign. Shall I send the email again - perhaps is wasn't clear?

[JohnPepper in reply to ramotswe]

The email address you gave me is possibly the problem.

Please give it to me again, in one unbroken line.

[ramotswe in reply to JohnPepper]

[e-mail]

[kevowpd]

You have clearly been misled into thinking that you can 'ditch' the meds if you take up a walking or exercise program. It is not the case. I am sorry you have been misled.

What's important is quality of life. Exercise will help that. If you need 1500mg of levodopa and one DA per day to have a quality life, then that is what you should take.

[ramotswe in reply to kevowpd]

Quality of life - that's true. More to think about. THANK YOU

[JohnPepper in reply to kevowpd]

I hope I have not misled anybody about doing fast walking and just ditching the meds. It took me 10 years before I no longer needed to take any Pd-meds. But during those ten years I slowly got getter. which is far more important than continuing to get worse!

[Godiv]

Yes I don’t see it being possible to ditch the meds. Are you having trouble exercising when you’re on the meds? I find that I have trouble if I’m exercising around the time of it wearing off. Or when I’ve just taken it. People who have had DBS I think or the Ultrasound I think are able to lessen their medications. And maybe John pepper can help I think he responded below. Maybe he can help you with a better exercise regimen that would help. But I think we’re all going to end up always on some form or dosage of meds. 😐

[ramotswe in reply to Godiv]

My exercise became more difficult without meds - I didn't make that clear sorry Godiv. Yes I'll contact John Pepper

[Godiv in reply to ramotswe]

No that’s OK. It’s my fault. I think my comprehension is going down the tubes LOL. I see what you mean now I’m sorry that’s happening. This is such a weird tricky illness and the meds too.

[Batmanbrian]

Taking baking soda increases oxygen levels. Increases athletic performance. Works for me. Research backs it up.

[ramotswe in reply to Batmanbrian]

Sounds incredible!! Do I have to bake a soda bread loaf for this😃How do you do it?

[Batmanbrian in reply to ramotswe]

First of all, I recommend aluminum free baking soda. Every morning I take 1/8th tspn of baking soda and Borax in a large glass of warm water with psyllium husk fiber. For workouts they recommend 2 tspns of baking soda in water for the average person. Look up "baking soda doping". I was diagnosed with Parkinson's over 21 years ago. I am 55 now and doing pretty well.

[ramotswe in reply to Batmanbrian]

That's encouraging. THANK YOU BATMANBRIAN. I'll look it up.

[reedboat2]

I try to keep meds to a minimum and exercise as much as possible. I’m progressively using more meds over the past 4 years since diagnosis, but that’s ok. The goal is not to “ditch meds” but to maintain a decent quality of life. If you find your exercise tolerance diminishing don’t lose hope. There are things you can do. For example, I mix HIIT workouts with a less physically (but more mentally) strenuous training like Qi Gong, and try to get in at least 2 hours of physical training per day. Keep trying and good luck with it.

[AaronS]

I don't exercise on meds, I'm always in my off period of time when I exercise