Avoid medication - and suffer!

[WinnieThePoo]

There is currently, yet another post, about being newly diagnosed and wanting to be med free (a much abused term - many of the "Med Free's" get their levadopa from macuna instead of a pharmacy. That's like buying paracetemol from Tesco instead of a doctors prescription, and saying "I don't use pharmaceuticals")

Now - I joined this forum because I wanted to be Med Free - and feared conventional medications carried a cost of accelerated disease decline. The short version, is I still use some "off-neurologist" stuff (Vit B & D supplements, Curcumin, Doxazosin, red light hat, and others on and off) but my conclusion is that the balance of probability is that the "scare story" drug problems are the progression of a disease (syndrome) which manifests dramatically differently in different individuals. It's a snowflake disease - no 2 versions are the same. I don't count exercise as "off-neurologist" - all 3 of the neuros I have seen have emphasised its importance

I had participated in a Cure Parkinsons Trust (CPT) webinar about Exanatide, and subsequent email correspondence with the team, and been asked to look in on this forum. I saw my neurologist, told him I wanted to avoid conventional symptomatic meds, and find disease modifying remedies and was offered Rasagiline, which might maybe be neuroprotective a bit. I wanted off-label exanatide. I ended up with a referral to Christine Brefel at Toulouse, strong endorsement from CPT - and ended up on Biogens BIIB054 trial at Toulouse.

And for the first 30 months post diagnosis was not on conventional meds, and doing OK. There are more than a few of us in this club. I could almost certainly manage without medication now. Manage, but live a much diminished life.

So, coming to the points,

1) many of us can manage without meds in the early stages, but this is a progressive disease, and most of us grow out of this.

2) There can be enormous quality of life benefits to getting good symptomatic medication for a fair lump of the earlier part of the disease (which is going to progress anyway). In my case, I am 61. Maybe I can use conventional meds to improve my quality of life until I'm 70. I won't get to live those 9 years twice

3) So if I machismo choose not to use medication until I'm 70 - I would be choosing my handicap and my reduced quality of life. Why? Because, in the absence of any very good evidence, I have bought the story - that declines in later PD, and reduced efficacy of the drug, are due to the drug poisoning me - instead of the natural progression of the disease. That's almost certainly wrong

I am inspired to write this, because of a few months of drug experimentation, and what I think I've learned from it in terms of degrees of "cured". I started on 1mg Pramipexole ER once a day whilst seeing Dr Brefel at Toulouse. I didn't get the big nasties (hallucinations, compulsive behaviours etc) but , maybe it made me cough, made me tired at midday, made my chest tight (it didn't actually cause me breathing difficulties, I just felt odd), and maybe I got light headed bending down, and maybe that was orthostatic hypotension. I wanted to try regular Sinemet as a contrast, and having ended the Toulouse trial, and switched back to my neurologist in Carcassonne, he agreed to help me experiment . I had started adding 2xmacuna 60mg ldopa TDS.

Trying to keep it short, I switched first to .5mg Pramipexole twice a day, and Sinemet 10/100 tds (Having just checked my neurologists report, in French, I see now he intended that to be 2 sinemet tablets TDS. Oops. No wonder I have a stock of them! Then, I faded out the Pramipexole, reducing by 0.26mg every 10 days until down to NIL and added Sinemet ER 25/100 once a day and Sinemet 25/250 tds.

I was due a neuro appointment this week, but he has vanished until November. So I saw my GP, explained the problem, and that I was undermedicated, and had increased the Sinemet ER 25/100 from once a day to TDS. He gave me a 6 month prescription for this latest mix, and commented it was a lot of medication. Which it was, relative to what I had intended.

Part of the problem, is C/L in Europe is no longer available in 25/100 immediate release - which is what I had planned to take. It's either 10/100, 25/250 or 25/100ER.

So, I have cut back to 25/100 ER TDS only. Then, after a week added 1 macuna 60mg TDS. And this week switched the 1 macuna for half a 25/250 sinemet TDS

And I have once again achieved a sweet spot. Although, maybe not sweet enough for my wife (she would like me to try mixing in some Pramipexole again - and if I can get a neuro onside, I might)

What defines the sweet spot for me? I can touch type absolutely as fast as I ever could previously. And I can play guitar. This has turned out to be a really precise measurement tool. And really emphasises the point about missing out on life by avoiding or delaying medication. The guitar thing is quite bizarre - I can not only make chord changes which I was unable to do quickly enough - I can form some chords which I couldn't before. My fingers grow!

The point being - living for today - with the help of medication - effectively I don't have Parkinsons. Or more precisely - I do not suffer the handicap which Parkinsons would otherwise be inflicting on me

You only get one life . I don't want to waste mine being handicapped in the belief, contrary to most of the science, that I am making things worse in the future

Added to that - there is a ton of good stuff happening in Parkinsons research. By the time I'm 70, who knows what will be available?

Carpe Diem

[Hidden]

“I had participated in a Cure Parkinsons Trust (CPT) webinar about Exanatide, and subsequent email correspondence with the team, and been asked to look in on this forum“Cure Parkinson’s Trust has asked you to look in on this forum. What an interesting arrangement. Can you please explain how exactly you are “looking in on us.”

[LindaP50]

Thanks for sharing. Good for you in reaching your "sweet spot." Fantastic!

[park_bear]

Yep - symptomatic relief is important.

what is TDS?

[WinnieThePoo in reply to park_bear]

TDS means 3 times a day - its latin "ter die sumendus"

[jimcaster]

We are approximately the same age and were diagnosed at approximately the same time. Even though every case of PD is unique, our experiences and beliefs are almost identical. When I first joined this site, I was obsessed with remaining drug free and I tried almost every supplement which anyone suggested. I was also put off by the more experienced curmudgeons who touted conventional medicine and were skeptical about the never ending stream of people claiming to have stopped or slowed progression because of some supplement or "doctor" with a "protocol" for Parkinson's Disease.

Like you, I have settled on various Vitamin B and D supplements and a coronet red hat, BUT SINEMET IS EASILY THE MOST IMPORTANT THING I TAKE. Obviously, I worry about dyskinesia and other potential issues down the road, but tomorrow is not guaranteed. A silver lining in all of this is living for TODAY. For right now, four years after diagnosis, PD is almost totally under control.

Carpe Diem!

[WinnieThePoo in reply to jimcaster]

Yup. Tomorrow is not guaranteed. My wife, an estate agent has just taken on a property where the owners are early 50s and he had a heart attack and she has terminal brain cancer. Their 2 children are 6 and 3. Our friend Maarten, who recently bought a house with his partner and 13 year old daughter was diagnosed with lung and brain cancer.

No guarantees

[Fed1000 in reply to jimcaster]

I agree with you. How much Sinemet (100+25?) are you taking? As for the Neuroaspis I received the first six bottles today.

[jimcaster in reply to Fed1000]

I take 3 (sometimes 4 depending upon my activity level) 25/100 Sinemet per day. I am glad you got the Neuroaspis. I am committed to one dose per day for 30 months to see if I can duplicate the study results.

[Fed1000 in reply to jimcaster]

Like you I am also taking Tru Niagen, I'm copying you. Good evening

[Hidden in reply to jimcaster]

Jim, I want to confirm this is the one? It is sourced from tuna. What about mercury and other contaminates associated with larger fish? Is it third party tested? I’m interested in trying it bc of the study but am currently using Nordic naturals ultimate omega and salmon roe.

Yesterday I was listening to Rhonda Patrick being interviewed by Andrew Huberman. She takes 2-4 grams a day 1/2 EPA 1/2 DHA.

Different subject, have you tried the vie light (red light) that clips to the nose? I’m using it now in addition to the helmet. Oddly my muscle fasciculations almost completely stopped after a couple weeks of use. Perhaps a coincidence.

Neuroaspis

[jimcaster in reply to Hidden]

Yup! That's the stuff. I'm not sure about mercury and I don't think it was independently tested, which would be a deal breaker for me if Simon Stott hadn't devoted an entire article to it. I keep waiting for wellred (Coronet Duo maker) to begin marketing their nasal attachment. I am on a waiting list. Whether coincidental or not, I am glad the Vielight nasal attachment is beneficial to you. 😊

[Despe in reply to Hidden]

Does it have a fishy smell? Dr. Mischley had recommended a liquid fish oil, but it smelled terribly and hubby didn't want to continue taking it.

If this Neuroaspis was available in liquid gel caps, we would probably give it a try. Cleveland Clinic had recommended Metagenics amazon.com/dp/B087YFDW5W/re...

[jimcaster in reply to Despe]

My senses of smell and taste are both diminished, but I think the peppermint masks any potential "fishy" taste.

[Despe in reply to jimcaster]

Thanks, Jim. He can smell, fortunately or unfortunately?

[Michel0220]

Hi WinnieThank you very much for your post. I think you are raising a very important point. It is very tempting, soon after being diagnosed, to try to go drug free for as long as possible. I think that there is much more that can be done as a patient than just taking meds (exercises, nutrition, meditation), but you are perfectly right to stress that meds should not be ignored and have a very important role to play (Sinemet has clearly improved my quality of life).

I would like to highlight the book below that played an important part in helping me shape of my opinion on meds. It is written by Eric Ahlskog of the Mayo Clinic, one of the US leading experts in Parkinson's disease.

The New Parkinson's Disease Treatment Book: Partnering with Your Doctor To Get the Most from Your Medications amazon.co.uk/dp/B0117Z2UP4/...

[WinnieThePoo in reply to Michel0220]

Thank you Michel. I have that book. What I lack is Sinemet 25/100 in France. Only 10/100 and 25/250 are available. If I am prepared to endure being put on the naughty stool by DrBrefel in July, I should at least be able to learn why it is no longer available and what the French treatment initiation protocol is.

Except I know she is going to say they like to start with agonists for under 65's...

[Teleman58]

I have had much the same experience as you…I’m 63 and was diagnosed in 2011. For me as well, playing guitar is the true test of my “on” status. If I can play Here Comes the Sun, I feel as you described, not having PD. Traveling today so I must keep it brief. Perhaps we can continue this conversation another time.

[WinnieThePoo in reply to Teleman58]

The instant tell for me is a Bm7b5 chord in "Summertime". When I'm not right, I just can't reach the lower strings

[eschneid in reply to Teleman58]

Will listen to Here Comes the Sun and any other Beatles songs you feel like playing all day. You and Poo keep strumming and feeling good. Any New York Ranger fans here, LGR!!

[eschneid]

Totally agree with quality of life being the key. If you really think about it what else is there other than enjoying the things that you like. It seems there was a time when holding off on sinemet to 'save' it for when tremors and dyskinesia became much worse as things progressed, yet, think of all great things you would have missed if you were too shaky or couldn't move if you held off on meds. Does not seem worth it to me... As stated above, nothing is guaranteed in life. Everyone have a great day and push yourself a little bit as well.

[MarionP]

Yes, so well said!

[PalmSprings]

Clear, to the point and so relatable, thanks for writing this piece.

[caitilin]

Thanks for posting this. I feel the same as you 👍🏻

[Highlander63]

Good for you! I respect your openness and flexibility to try and reach for something better for yourself. I play guitar in a band with my right hand tremor. It’s a challenge holding the pick and strumming. Since I started Sinemet it has improved. I also take Pramipexole Enjoy your guitar. Thanks again for your wonderful input.

[alaynedellow]

I'm in france too n my neuro reckons madopar is more available here. Yes i grab every day. I combine my meds with well being n being aware of me and stuff i take

[WinnieThePoo in reply to alaynedellow]

Oh yes. You're right. Madopar is available in the regular 25/100 form. Presumably Dr Brefel will know that when I see her. Thanks

[LAJ12345]

Gosh I wish my hubby could find his sweet spot.

[WinnieThePoo in reply to LAJ12345]

I had a quick look at your profile. You have tried a lot of natural remedies without much success. Has your doctor considered a dopamine agonist like pramipexole? Medication is always a balance between therapeutic effect and side effects. It's a snowflake disease and every one needs a custom solution. I hope he finds his

[LAJ12345 in reply to WinnieThePoo]

We had great success for about 9 months but after the vaccine booster he has had a steady decline. Maybe other things were more stressful too adding to it . Trying to get back to an even keel. Medications always make him much worse as he gets every side effect without fail. He has already had compulsive behaviours on ssris so I think he would probably get that one.

I think his current problems are due to too much medication but with the madopar capsules he can’t take any less per dose. Half as much more often would be better we think.

[JeanieBeanie in reply to LAJ12345]

In our experience too much meds are the main cause of problems like falling and diskenesias and loss of voice.

[JeanieBeanie in reply to JeanieBeanie]

My husband stopped taking madopar because of the problems with it.

[LAJ12345 in reply to JeanieBeanie]

How did he come off it? Was he on the slow release or fast release?

[JeanieBeanie in reply to LAJ12345]

The soluble one. I now make him a solution of half teaspoon mucuna with half 25/100 mixed in juice which takes with 2 25/100's.

[LAJ12345 in reply to JeanieBeanie]

Thanks, so do you mean he takes the mucuna juice + 1/2 tablet dissolved at the same time as 2 whole tablets? How many times per day?

[JeanieBeanie in reply to LAJ12345]

Yes. About 3 times a day with the solution. It seems to bring him on quicker. He is 28 years in don't forget.

Solution bottle.

[LAJ12345 in reply to JeanieBeanie]

Thanks. Wow 28 years is a long time.

[JeanieBeanie]

My husband was diagnosed 28 years ago so we pretty much know that letting your dopamine levels get too low is bad news. We have tried all kinds of alternatives and use Mucuna along with sinemet 25/100 normal and slow release and they still work after all this time. Obviously he medicates every 4 hours or when needed. If a dose is missed for any reason we can certainly tell. He will never miss his silegiline which he has taken from the beginning. We go abroad 3 times a year which does him good. And by the way Winnie, you can buy sinemet normal release 25/100 in Portugal. We bought it from the chemist. So it might just not be available in France. It was reasonably priced too.