Where am I now in 2025, seven years after being diagnosed.
They say the average life expectancy after a Parkinson’s diagnosis is 14 years. We all sure hope “they” are wrong, I think they are.
STRESS: Causes off periods easily. Avoid at all costs. Not getting stressed when you have Parkinson’s is as easy as not having chocolate at Wonka Land. Impossible.
BOOZE: A small glass of wine or small adult beverage counteracts the meds, rendering them useless, for me anyhow.
PROTEIN: Bad. Too much of it. Protein drinks, a good steak, any food or supplement with a lot of protein will flair up my symptoms for quite a while.
LOVE & FUN: Great, diversionary and necessary. Sometimes however, if you’re out an about, you begin to feel “too normal” then, your foot curls up and you cant walk. Everything in moderation and make sure that you have an “out”.
GRASS: Eh, I NEVER smoked before but, I did try this last year. Made me cough, I did feel different, better I guess for an hour but, nothing long term and it was not enough of a trade off to continue.
GUMMIES: Terrible, never again. To each their own though. Whatever helps you or diverts you from stress.
CDB: Nope, did not help with anything including sore muscles and all my Parkinson’s related pain. Had the expensive stuff, tried for 8 weeks. Nothing.
HERBAL TEA: Depends, sometimes I feel like caffeine, sometimes I don’t. I have however had some herbal teas interact with my meds poorly. I will try to remember which herbs and share them here.
SUPPLEMENTS: Be very careful! HCA, nope – Dopa Mucuna, nope – St Johns Wort, nope – L Theanine, no – DHA, no – 5-HTP nope. These were bad experiences for me. 1500mg Omega-3 Fatty Acids (from purified fish oil) daily 30 minutes before or 60 minutes after my Simenet is fine so far.
Friends: I cannot stress enough what it is like to finally have a couple neighbor friends I can talk to! Hang out, watch sitcoms, laugh out loud and even vent. THE BEST MEDICINE!
DRUGS
Well, I am maxed out on what I can take. Which is 4 Carb-levodopa 25/100 (2-morning 1-afternoon 1-late afternoon) and 4 Carb-levodopa extended release 25/100 (1-morning, 2-afternoon, 1-night).
So… Dyskinesia is always waiting in the shadows. Dyskinesia is not tremors but, a reaction to too many meds, specifically Carb-levodopa.
In reality, it’s a fine balance between freezing up or flailing around like I am testing a cat teaser.
WHAT HELPS?
Having no insurance, my options are limited. However, if you are a low income sufferer like us, some of these pharmaceutical companies will help.
For instance:
Inbreja. Works good when you are in an off period, but a bit nasty.
It’s a powder in an inhaler form.
You put a capsule in a a large pen device, put the end on and push, that’s where it punctures the capsule.
You then suck on the end inhaling the powder. You do this twice, two capsules.
Takes about half an hour to take effect for me.
Ask for a sample from you neurologist and a prescription if they feel it right for you.
Fill in the application. I got a year for free. Otherwise it is $65 a dose or just over $1000 for 16 doses.
IDK what it is if you have insurance but, it is considered a specialty drug.
Apokyn (My husband call it “A poke’n” for reasons you will read next.)
This is an injection. Don’t fret, the needle is really tiny and sometimes I don’t even feel it.
It comes in a pen injector thing with a dial on the end.
You load the cartridge, dial the dose, mine is 7 clicks, they start you with 5 (.1 ml), then grab some skin and inject by pushing the button. Easy! WORKS in about 5 to 10 minutes.
This is my favorite. Can use up to 5 times a day.
Again, very expensive. $7726 for 15 milliliters! $4935 for generic.
In comparison: 15 Grams of Gold (15 milliliters weighs 15 grams) today on 04/15/2025 is Worth $1,549.
But again, the company will send you some for free if you qualify.
Ongentys
This is a capsule. AGAIN, very expensive. I am in the wrong business. Why don’t all of us Parkinson’s folks start a pharmaceutical company! I digress.
This stuff is $778 for 30 capsules! $62 a 50mg capsule or $778 a month for the lowest dosage version! WTF ever. I take one a night.
In comparison: 50 Milligrams of Gold is Worth $5.17 .
However, if you qualify, they are free though patient assistance.
Amantadine
This is a capsule I take 4 times a day. Cheapest one of them all at about a dollar a day.
God forbid you have a good paying job AND Parkinson’s … right?
Without assistance programs from these companies, I would not be able to sit here, let alone, type this.
All said, these man made medications cost FAR MORE than gold per gram. How is this even possible?