I thought it might be useful and courteous, considering how much information was originally kindly provided, to provide an update on my position.
Following my original post in September 2020 ( healthunlocked.com/cure-par... ) asking for advice as to how to manage PD symptoms medication free, I received some great information and suggestions.
Over the last 7 months I have tried to research and follow some of these potential interventions. This has included engaging with: Fast walking; 40 mins fast cycling; Resistance training; HDT B1; Qi gong; Meditation; Yoga, Breathing exercises; Intermittent fasting; Diet (Low/No sugar, reduced carbohydrate); Probiotic (Bio Kult – Bacillus subtilis), Photobiomodulation (Red Light helmet) etc.
Whilst I am aware that the timescale for trying these interventions has been quite short (7 months) in general I gave each intervention at least 4-6 weeks minimum and monitored for any changes. I then decided whether to continue and/or introduce the next intervention. Some things inevitably overlapped.
I didn’t get time to try things like Mucuna pruriens; Mannitol; Cinnamon etc. but I am guessing that there is no reason why I couldn’t try them in the future.
Sadly despite my best efforts, my symptoms have worsened, resulting in me spiralling downwards into what can only be described as a ‘very dark place’. It seemed the harder I tried to address the symptoms, the worse I got.
In addition I continued to lose weight, so much so that I was seen by my GP and classed as ‘clinically underweight’ despite a good diet and appetite. I have been advised to start a high calorie intake diet, with high calorie drinks in between meals. From the little I know the foods suggested seem to go against the suggested diets for managing PD, but I desperately need to put on weight as anyone who has seen me during this time has commented on how ill I now look. Hence self-esteem and confidence are at an all-time low.
With my dream of managing my symptoms medication free rapidly becoming a nightmare I gave myself a kick and decided to contact a neurologist to have a discussion as to whether to start medication. The upshot is that following that discussion I have started on 1 x Rasagilene 1 mg and 1 x Rotigotine (Neupro) patch (started with 2 mg and moved onto 4 mg). So far no benefit observed in terms of symptom relief from stiffness, rigidity or slowness etc. Possible side effects are constant mild ‘foggy’ headache feeling (I never get a headache, so very noticeable to me), mild nausea at times plus some spasms/cramping in non PD leg and foot. I will remain on this dose for 4 weeks then the plan is to move me onto 6 mg if no benefits and/or serious side effects.
As a result of my increased difficulty with daily tasks I have also finally informed work of my condition and have gone part-time hours whilst I find a stable medication regime.
So there you have it. After 3.75 years since diagnosis I reached a position where it felt the right time to try medication to hopefully slow the downward spiral and help manage my symptoms.
If anyone has any advice as I move forward, especially experience with getting the most benefit from the Neupro patches then it would be great to hear from you.
Best wishes to you all.
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Salvation1
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Thanks for your post and your honesty. I started on an agonist. I am still on one 12 years later. They are not ideal but neither is levadopa and those are the only meds that are effective. I hope you find the dose and drug regime that is right for you. It can take some time .
- 3- those whose PD has progressed sufficiently slowly that so far, they can get by without them
- 4- those for whom PD meds don't appear to work. This bucket is not in an alternative-therapy nirvana, they are basically struggling like group 2 is
- 5- those that have had surgery (by which I mean DBS, though other PD surgeries too, perhaps), though most surgery recipients still take meds
- 6 - those with relatively early PD that are using unprocessed mucuna. This is still ldopa supplementation.
3. The reason for this: "I found everyone from the medical side uninterested in an alternative approach and was continually told to ‘take the meds’." is this: they aren't any effective 'alternative' approaches. There are supplementary or adjunctive approaches but they are not alternative. I.e they supplement, not substitute. Even the most ardent supporters of the commonly mentioned non-drug approaches on this forum (Roy with the B1, PB with the B1 and the Cinnamon) still take PD meds (yes, I am well aware of one particular member that does not take PD meds. All i can be bothered saying about that is this: if anyone wants to undertake his approach as a substitute for meds, go for it. Let us know how that goes).
A fair bit of what you were told in your earlier thread was well intentioned but really irrelevant to the treatment of PD. For instance, it is likely that you will never find the 'cause' of your PD, unless you happen to live in a pesticide factory or have been injecting heroin laced with MPTP. The cause is likely cumulative and occurred over a long period time. Absent some pretty big advancements in technology, we will probably never know what cause your PD. So don't spend too much time worrying about it.
A lot of advice in this bucket is what I consider 'tinkering'. Or 'fiddling whilst rome burns'. In other words, devoting time to things that are likely to have at best a small marginal effect on your condition whilst ignoring the areas where you can really move the dial on how you actually feel day-to-day (i.e appropriate meds combined with appropriate exercise). A lot of this advice (though not all of it), in my experience, comes from those that don't have PD. Again, they are well intentioned, but not having PD, they do not understand the my body is slowly but surely shrinking around me feeling that PD causes. And no, knowing or being related to someone with PD does not, again in my experience, provide anywhere near the understanding of actually having it. In much the same way that, whilst I have experienced intense pain before, I do not claim to understand what the pain from an Pancreatic cancer is like, even though I have seen someone suffer from it.
All of this does not mean that doesn't mean you shouldn't try to live a clean, stress free life, or that you shouldn't try yoga or various other mindful things. There is probably no harm in most of the supplements recommended here by long term members though personally I am a bit nervous about especially high doses of anything. That is just me though.
What you should definitely do is exercise with as much intensity as you can, for at least half an hour 3 or 4 times a week (every second day, perhaps). No need to take my word for it, though. Google it. Run it by your doctor (doesn't need to be your neuro) to make sure your ticker can handle it.
4. You owe it to yourself and those around you to persevere with the meds for as long as you did the alternatives. Don't declare yourself a non-responder to PD meds after a week. It takes time and adjustment and probably, different meds. Many put themselves into that bucket (i.e the meds-didnt-work-for-me bucket) but far fewer are actually in it.
Kev very good answer, I guess you speak from personal experience; are you pwp or a caregiver or do you work in the field? what do you use for your PD? I've never read anything about you. From the in-depth knowledge of posters it would seem that you are not new to these parts, have you changed your avatar or profilo ?
Having read it all I just want to say that i was in denial of dx and refused meds for first 2 years of the past 4 since dx. Ive had a few long stays in hospital for definitive dx and tried lots of meds. I tried neupro patches. 6 mgs for 6 months as well as staying on my kinson (carb/Levo ). I found they made no difference. I too had a weird foggy almost painful headache. I have stopped them and gone back to just kinson increased now to 2 x 25/100 x 3 times a day and at bedtime one and a half slow release 200/50 sinemet slow release tabs to keep me moving in bed all night. I have been taking B1 x 500 mgs a day and B12 x 250mgs once a day. Good multi vitamins and cbd oil (no thc) for curling and cramping and lower back pain and left leg dragging and hemiplegia. I finally am increasing my mobility and moving more easily. Still pretty yuk but better.
Read what you can try what you can and I wish you luck in your search.
PS. I’m going to try adding Ceylon cinnamon and see what happens. Can only try - Pd has taught me there’s nothing to lose.
How would you describe your "good diet" currently? I see what you've been doing but I'm not sure if you're not getting enough calories or experiencing the more concerning cachexia - I hope you're been consulting your physicians or more appropriately a good field nutritionist of this in-depth. Oh, and just because they don't have PD doesn't mean they don't have the knowledge of what they're talking about nor have relevant experience to lend help. 😉
I'm very sorry to hear that your symptoms progressed fast despite the great suggestions offered by many in your original post. We all hope for the stars to align that at least some of the best practice protocols could be efficacious to counter/slow the progression for the newbies, but that's unfortunately not always the case for the very complicated disease with myriad differing causes. Nothing ventured nothing gained to try finding that missing gap, and having tried to no avail should never validate the naysayers nor should it stop you from leaving no stone unturned even for a minute worthwhile chance moving forward - this of course depends on your perspective.
If you've drastically ramped up your exercise but not eating enough or have trouble absorbing the nutrition while also fasting, you'll naturally lose weight. This would be especially applicable if you're having a thyroid issue, metabolic crisis, absorption issue (see undigested foods in your feces?), nutritional imbalance (such as zinc deficiency), etc. I had the same problem for years while experimenting with myriad diets while fighting insulin resistance, but what ultimately worked for me (with naturally high metabolism) was adding back organic sprouted grains (absorbable fibrous complex carbs with trace minerals) and reducing the portions of meat. Yes, avoid the high calory sugary meal replacement drinks. Concentrate on no sugar, less refined food, organic whole foods, varied colorful diet. For more detail on this, see healthunlocked.com/cure-par... The post responses seem very disconnected because a troll who likes to change his member name/identity deleted all the response while the good info remains. You'll need to address the cause of your weight loss and get a handle on it. For additional culprits to sort out, visit healthline.com/health/unexp...
Nevertheless, from what I'm reading, experiencing persistent brain fog or headache as side effects seem concerning and may be affecting your mitochondrial health. I'm with park_bear and the next best step may be dopamine replacement therapy to hopefully address your debilitating symptoms for QOL - whether Mucuna, DopaBoost, Levodopa, etc. However, keep exercising at least 4 days a week and keep up with most of what you've been trying even if the benefits seem almost imperceptible after a few months, especially the HDT - don't forget the Mg (may help the foot cramping) and other B's to go with it. healthunlocked.com/cure-par... Although what you've tried thus far couldn't slow your progression, they're still pieces of the whole puzzle and should not stop you from exploring other options.
In addition, I don't want you to miss this new helpful video by Dr. Mischley. Special attention on around the 56:43 mark. You still have time to join that 9% stat. No, it's not the easier road and requires effort and perseverance but try your best to join the optimistic herd.
Have you looked at Fast Walking? If you look at my profile you will see that I have been able to overcome most of my movement problems and have lived Pd medication-free since 2002.You are welcome to ask me anything.
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