[EmptyNest68]

I was diagnosed in 2003 at 35 yrs old and on meds most of that time; went off carbidopa levodopa in Dec 2009. Is there anyone else on here who has been trying or succeeding in making life as easy as possible with no meds on board? What are your symptoms? How severe are they? What bothers you the most? What HELPS the most? If you don't want to post a reply to this, please feel free to PM me. I really need some feedback. I haven't seen a doctor in about 3 years either, and my symptoms are worsening. Thanks very much.

[paula_w]

what were your symptoms when you started meds? did you notice them prior to 2003? can you estimate how long you actually may have had pd? what are your symptoms now?

I could never go off my meds without intensive intervention, i wouldn't be able to breath and i'd be contorted and wishing myself dead i'm sure.

But never say never so I'd really like to hear your story.

[EmptyNest68]

Symtoms were stiffness along my right side, instability, internal tremor, major fatigue, all which weren't normal for me. Docs tested me for MS, wilsons, inner ear, vitamin/mineral deficiency, all negative. They sent me to a movement disorder specialist who diagnosed me with young onset-Holly Shill with the Muhammad Ali Parkinsons institute. I had the cog wheeling and micrographia I remember..the symptoms started about a year before I even went to the doctor. I do remember my thumb being really stiff and burning, while my ring finger developed a tremor, which persists to this day. Those were my very first indicators of something strange. But it took a year to go see a doc.
Mirapex made me fall asleep everywhere and walked around in even a bigger fog: the clincher for me with that med was I hallucinated huge spiders and am DEATHLY afraid of them. Carbidopa levodopa was of course the best med for me. I was more fluid and clear cognition, no tremor. Along the way, I decided to go off of the meds to try and "control" the illness with diet and exercise and started jogging several times a week, cut out all processed sugar, most caffeine and carbohydrates (except those in vegetables), and "beefed" up on proteins and veges. It was pretty horrible for a time but after a couple of months the most bothersome was stiffness, a new slight shaking of my right arm and leg; but I found as long as I exercised and stretched, while they never go away, they don't impede too much. I saw an acquaintance recently who was diagnosed around the same time, about 15 years older than me, who's been on sinemet for most of that time, and she's already having the dyskinesia. I mean no offense, but that frightened me...SHE didn't, just the side effect.
My symptoms now are increased stiffness, fatigue, the shaking in my right arm and leg, imbalance, loss of smell, bladder probs, soft voice, inability to correctly convey my thoughts to my mouth, major cramping in limbs, throughout torso, can't open bags, bottles or jars; periodically my blood pressure drops really low and my breathing feels shallow. I still work and exercise, drink lots of water and eat well. I can jog or power walk better than just walking through the halls at work. I have to plan my days around work, as it's my primary energy-taker. Walking takes up the rest of my energy and physicality for the day, and then I am done.

[marciaj]

Originally Posted by EmptyNest68

I was diagnosed in 2003 at 35 yrs old and on meds most of that time; went off carbidopa levodopa in Dec 2009. Is there anyone else on here who has been trying or succeeding in making life as easy as possible with no meds on board? What are your symptoms? How severe are they? What bothers you the most? What HELPS the most? If you don't want to post a reply to this, please feel free to PM me. I really need some feedback. I haven't seen a doctor in about 3 years either, and my symptoms are worsening. Thanks very much.

Diagnosed in 2006 at 55 yrs old. Neurologist did not want to put me on anything till I couldn't function. That was the only time I saw a Neurologist. I've gotten worse but manage by letting others do the things I have trouble with.

I have tremor in one hand. Stiffness. Toe curl. Foot drag. Lately back pain if in bed for more then 6 hrs (this might be the mattress). Sometimes I can't get my hand to move (freezing?). Sometimes double vision (only for close up like reading). Loss of strength.

I'm really not doing anything to help. I should be exercising but I don't like I should. I do stretches thru out the day to help my arm and back. My shaky side is also the side I had breast cancer and removal of some lymph nodes. So lately my arm has been sore and it might be that. I rest it when I can and elevate it. I bought turmeric but haven't started adding it to dishes yet.

I don't work so when tired I take a nap. I do what I can at my own speed. I read a lot. I try not to stress over things.

I also am slow typing, Used to be 60wpm. I used to paint and draw and sew. I do other things now. I'm still me just a little different.

mj

[soccertese]

i don't get it,everyone is different. you might not get dyskenesias on sinemet. there's a new formulation of sinemet coming out that supposedly reduces dyskinesia from IMPAX.

can't understand trading a continuing lower quality of life, especially when there might be some definitive proof that forced exercise might help symptoms and reduce med needs, out of fear of dyskinesias. my philosophy is take the least sinemet i can, exercise, stay healthy, and get ready to jump when something better than sinemet comes out but why be miserable, you could get hit by a truck tomorrow? i was diagnosed in 2001, i'm 56, take 600mg a day and no dyskinesia, nada. taking 600mg of an amino acid when likely less than 1% gets to your brain? yet one likely ingest grams of meat or vegetable protein, made up of amino acids, everyday. something to think about. just my unsolicited opinion.

[paula_w]

i postponed meds just by not going to a neuro and worrying for at least 3 yrs. but at the time i was exercising regularly and then went 6 or 7 more yrs on selegiline and agonists. so i had it for possibly 10 yrs before going on sinemet. now it's all i take and amantadine and anticholinergic. not dyskinetic when on...have end of dose and off dyskinesia.

we truly are all different . thanks for sharing.

[Aunt Bean]

Hi from Aunt Bean....I am not on doctor's meds. I use fava beanplant tincture that I make/ dried fermented papaya, homemade/ stewed together strawberries & rhubarb/
take supplements...turmeric, B complex 100, memory enhancer, A&D vits, Hawthorne Berry, cranberry, Co Q 10. I eat mostly vegies & fruits with eggs and alitle fish. Exercize by gardening an acre & 1/2 mostly with my mattock, dance, sing, play music and care for another PD patient. God is good...my days are practically symptom free. Just started taking a teaspoon of Blackstrap molasses each day which is helping the constipation. And Aquas from PD Recovery to help with hydration.
May the Lord lead you in your own journey with PD ...Blessings

[marciaj]

I started adding the turmeric to dishes I make and to my oatmeal in the morning. I also have raisins in the oatmeal and can't taste the turmeric. For the past couple months I've also been drinking two cups of green tea in the morning. I read this was good for the immune system. For the past few days I've been taking glucosamine chondroitin for a back pain.

Aunt Bean, if I might ask, how long you've been taking these steps and if it helped your symptoms. Or if you think it has slowed the progress.

[Aunt Bean]

My symptoms became worse last Oct. urinary frequency to the point of 3 times an hr and then soaked myself twice. more outer tremor , more neck & shoulder pain & stiffness,
more difficulty driving (slow reflexes) etc.. first tincture was ready end of Oct...when I was at the point of maybe needing Depends underware.....never another accident and I was back to bathroom trips once a night instead of 4 to 5 times a night and every couple hrs or even 3 hrs daytime. What a relief! So the tincture has been a year and 5 months.
I gradually addded my supplements with research. First batch of Papaya was made around Thanksgiving 2010. Within a week- improvement in eyes for nite driving. With increase of dried fermented papaya several weeks again...my nite time "hunch back of Notre Dame" symptoms (right foot drag/ left "puppy " paw/ right arm flailing to keep my balance on the nitely trip to the bathroom between 12-4:00.....disappeared , to my delight. I don't take tincture after 9:30 upon going to bed and was depleted of l-dopa and already non-functional from inactivity . By 7 am , my own dopamine seems to "kick in" and I am able to stretch & massage my way out of the pain & stiffness to get up and take tincture and go on my way with daily chores & work without symptoms. I take tincture from4 to 6 times a day as needed (which only adds up to about 1 1/2 teaspoons at the end of the day. Approx 8 drops at a time. But, praise God it works!!
Blessings to all....smile / laugh/ dance Love Aunt Bean