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[cowmom27]

HI, was diagnosed with PD in 3/06--very angry at first--soon realized this was a waste of energy. Looked at myself in mirror and decided that I couldn't give it back so I better learn to live with it!!! At the time I was a staff RN in a busy ED but not once in my 17 months working there did I have a patient comment on my tremor nor did I not get an IV site on the first attempt. Humor I have found is the best medicine---not that I don't get frustrated I do but I am the first to laugh at myself which is good for me and helps others accept the challenges I sometimes have to deal with. It's been 5.5 years and the disease progression has been slow for which I feel blessed. I retired this past April from a nursing career that spanned 46 yrs, recently started a relationship after 15 yrs living independently following a divorce, still drive and am actually feeling better than I have in a long time --so life is good.

[blackcat]

welcome i know u are going to be a great one on our site,, i had tremors for ages before i was dx but my family has a hx of familiar tremors i was a paramedic for 18 plus years and u are right i didn't miss an i.v and that was in amoving ambulance over country roads with lots of adrenalin at times. some times when the tremors were worse than normal no one would say a word but sometime the look was enough. so i would say to them don't worry as long as u keep your arm going the same speed of my hand we would have no problem!!!! they would laugh and i would be taping the iv into place, good memories i did have to leave my job as a funeral director though but it was because of a combination of different health reasons. i still drive but my husband doesn't like it and he guilts me to staying at home i am suppose to go to a friends house and than my nieces for the week end which i canceled last week and he is making me feel so guilty because he will worry too much. don't let anyone do that to u or take away your spirit . having your spirit taken away is worse than the disease

[Parkinson_Schmarkinson]

Hello all! I was diagnosed a year ago at age 57, but the first symptoms appeared abt. 4 years before that. Following my diagnosis I retired with disability from my job as an elementary school teacher, started taking the usual meds, began regular exercise (Yoga, Qi Gong, some PT routines, and plenty of walking and biking).

I so have symptoms but the fact is that I am happier than I have been in many years! I love being retired and a little meditation helps me avoid negativity.

I also enjoy being in contact with my PD community, so I'm glad I found you.

[Hidden in reply to Parkinson_Schmarkinson]

I was diagnosed 5.5 years ago, at the age of 56. I also was an elementary school teacher who had to retire with disability because of PD.

2.5 years ago my meds were changed and I felt like my life was given back to me. The side effect of my meds was PD symptoms. I was a mess until my meds were changed.

My symptoms are progressing slowly. I try to keep my stress level low.

I also began regular exercise and and eating healthy. Iit has helped alot.

[tlongmire in reply to Hidden]

If you don't mind sharing what drugs were you on and what were they changed to?

[Hidden in reply to tlongmire]

I started on Mirapex and hoping to improve my concentration and other side effects, switched to Requip, 3 mg three times daily.

About 2 years later I went to the Mayo Clinic. They changed my meds to Sinemet 25/100 tablets. 200 mg taken 3 times daily

After taking these drugs for 2.5 years a new doctor, a Cardiologist (because I was having blood pressure issues, a lot of weight gain, tired all of the time…he sat and just listened to me for over 40 minute) took me off of ALL medications to see how I was on nothing. It was VERY difficult coming off of the Requip!!!! But, very much worthwhile.

After several weeks of being off of all meds I realized I could not move my legs. We went to an emergency room (we were out of state for 2 months) and they put me on Carb/Levo 100mg, later a Neurologist added Amantadine, to help with the shaking.

Last March another Neurologist, I had been seeing her PA,, changed the Carb/Levo to Stalevo (100mg) 4 times a day and Carb/Levo once a day. This seems to be a good match for me.

I now read everything about a med before taking it!

Thanks for asking I have enjoyed this review of my medical history!

[tlongmire in reply to Hidden]

Thanks so much for the information. I have had a lot of weight gain also. I'm on carb/levo 25/100 4 x day, paxil and clonazepam (for sleep).

[Paul_Dineen in reply to tlongmire]

tlongmire,

We have a lot of meds in common. I use crb/levo, but had to back down (under my, now, 3rd neurologist) from a total of 900mg/day (across 3 x / day) to 600mg because I had too much dyskinesia.

I take a generic of Paxil.

I switched from Lunesta to clonazepam because of restless legs. It fixed the restless legs and I sleep just as well (ie, pretty well).

I'm curious if you also take clonazepam for sleep because of restless legs.

[tlongmire in reply to Paul_Dineen]

I was restless everything. My husband would actually have to hug me tight because I would be thrashing about so much. The clonazepam gets me to a good REM sleep which I wasn't getting to before the med.

[Jose in reply to Paul_Dineen]

I have PD/RLS 24/7 except for a time after dopa meds take effect. My RLS feels as if I'm being given electric shock with a cattle prod or have fire ants crawling under my skin (mild to severe intensity). Relief is achieved with stretches of hamstrings leg muscles, hanging from bars and riding Theracycle. Other movement, eg., walking, trigger point massage, or using a blunt instrument to pound above the knee cap on thigh give temporary relief. If I'm confined to a hospital bed or in a car, the sensation is agonizing. This actually happened to me in hospital during a stent heart procedure. I had to lock my leg in an isometric grip for over an hour with no relief from above noted RLS symptoms. This RLS creates an inability to sleep normally which TOTALLY disrupts my life. For 10 years, I've tried all known prescription meds and have had second and third opinions from highly respected neurologists/sleep specialists in USA with no relief.

[Jupeter in reply to Hidden]

Hi, I am also on 4 Stalevo per day plus 1 carb/leva

But I am not sure which is the best time to take the carb/leva.It is the quickest acting so I am taking it as my second tablet of the day, around 11am.

That gets me moving for lunch OK. What is your regime?

I also take Requip, 9mg per day

[Hidden in reply to Jupeter]

I take Stavlio and Amantidine at 10am & 6pm. Just Stavlio at 2pm & 10pm. I take the Carb/Levi any time between 3am & 5am....depending on when I wake up.

Except for Nexium I don't take any other drugs.

[Paul_Dineen in reply to Hidden]

DiCan,

> switched to Requip, 3 mg three times daily.

Mainly, I'm interested in your schedule for Requip and the Stalevo.

My current neurologist has me on 3 meds for treating PD, including Requip XL. The others are carb/levo and trihexiphenadyl(sp?). Amantadine for the Dyskinesia (which was reduced considerably by backing down on the levo).

He has me taking the levo, trihexiphenadyl and amantadine 3 x per day. He also has me on 16mg of Requip XL, However, he says to take all of the Requip at once in the morning, not spread it out thru the day like with you. Did your Dr say why s/he has it spread out? It seems sensible to me to spread it, esp if my others are spread out. But, I'm in no way a medical person -- just a patient wondering why.

I'll ask my neurologist about that, but I'm interested in anyone's experience or thoughts here, esp before my appt in mid-Jan.

> Cardiologist ... took me off of ALL medications to see how I was on nothing. It was VERY difficult coming off of the Requip!!!! But, very much worthwhile.

I came off 8mg/day of Requip XL before. But, that's not a high dose and it was gradual, so I had no problem.

>being off of all meds I realized I could not move my legs.

I had to get off all meds in the spring before my first visit with this neurologist. Yikes. I had to use a cane, then started benefiting from a borrowed wheelchair at work after my walk became very, very slow, including freezing. He prohibited me from driving (-> work from home) until he had me back enuf on meds to drive again. My balance at home was terrible -- many times needing a wall/counter-top/furniture/etc to stay upright. It's scary how things are without the meds.

> a Neurologist added Amantadine, to help with the shaking.

IIRC, I started taking Amantadine at the same time that I increased the levo, and I ended up with too much shaking, so he had me back off the levo (and added Requip). So, it's hard for me to know how much difference the Amantadine made.

> another Neurologist,,... changed the Carb/Levo to Stalevo (100mg) ...

I've seen Stalevo mentioned often on this group recently. I don't know about it. I wonder why it has not come up with my Dr. I'll ask him. From a little googling, it at least seems not incompatible with my four non-PD meds.

[Hidden in reply to Paul_Dineen]

Stalevo is Carb/Levo with something added so it will last longer, it seems to be working. Just before I changed to Stalevo I thought I would have to increase the amount of Carb/Levo I was taking. I have not had to increase any meds since beginning Stalevo, about 10 months ago.

My last visit to the Neurologist, about 3 weeks ago, she told me I had actually improved some. (I’m sure it was a combination of several things.)

Hope this answers your questions.

[Paul_Dineen in reply to Hidden]

Yes, your answer does clear up something for me. My neuro looks surprised when I reply that, No, I don't feel the difference shortly after I take the set of meds I take 3 x day - I feel about the same all day WRT PD. So, the longer-lasting med is not particularly called for.

Thanks for your reply.

[Aussie]

Good on you,mate. Join the clan. once you accept the PD, it's get on with living, don't dig a hole. I was also Rn/Rm for 46 yrs, then was put on a pension.

[ram927]

It's 6AM in South Dakota at the Badlands annd I'm trn from my bike and morning workout. I was dx 4 years ago and I feel my habit of on the go all the time has made my acceptance of PD better. I'm accepteed by most of what I have and only a few have held it against me but I don't hold that againsr them dofor nit knowing abut Pd b/c I'm just learning ny self never was a great typist and this doesn't help but such is life always remember you areonly one BUT you are one and you caan make a difference

[GrandmaPaula]

I was diagnosed 6 years ago at age 56. I am fortunate that I still am at the stage where the disease is annoying and not debilitating. I have a generally positive outlook on this journey called Parkinson's Disease, living mostly with the attitude that it doesn't help to dwell on the potential negatives of the future that I may encounter from this. Having said that I do have my occasional "pity party". My husband is a rock of strength for me (and my two aged and frail parents) - without him this would be a much greater challenge.

[cowmom27]

Hello all, thank you for your comments, As for meds I started out wth Mirapex and a neurologist who didn't appear to all that knowledgeable about PD---made a comment saying PD was NOT hereditary.Gee that's funny---my maternal grandfather. his son had it, my mom was never diagnosed but had terrible tremors and at the end of her life was diagnosed with Lewy-bodies dementia and recently found out that my maternal grandmother's niece is also dealing with PD--so much for that theory!! I then started requip 3x/day but stopped after having 3 syncopal episodes while driving----requip xl, not yet generic and very pricey but no syncopy. 2010 I went to Illinois for a visit and made a stupid decisionto drive home 675 miles in 1 day----put my PD in a symptomatic nightmare and the P.A. I was now seeing placed me on sinemet 25/100 and gave me back my life. I am currently in a trial study and seeing a PD specialist associated with a Movement disorder clinic at a local university hospital and his med student. The Md has agreed to accept me as a pt.---the neurologist I was seeing left the state and while I like & trust the PA I am seeing, I feel changing now will be beneficial when & if my symptoms get worse. Sleeping is a major issue----better in my recliner or couch---don't last more than 3-4 hrs in bed. Currently take 2 sinemet 3 to 4 times a day--get slower and slower as it wears off, use a cane for stability, have a rolling walker with seat--good when I am out for a day outing that requires more walking and have a mobility scooter but so far only used it once. I value my independence and plan to hang on to it for a very long time---it took my new boyfriend a while to get that I was not looking for a caretaker but eventually he did-----I ask for help when & if I need it but it's nice to know he cares---so life is good.

[Hidden in reply to cowmom27]

...having 3 syncopal episodes while driving...please describe to me what the syncopy episode was like. I had an experience, twice, that I think was syncopy but no doctor could tell me what had happened. I was also on ReQuip and seeing a PA. When I changed to Carb/Levo felt like my life was given back to me.

[cowmom27 in reply to Hidden]

I would be driving down right side of road and without warning come-to on opposite side..... no recollection of what happened. Very frightening...stopped Requip 3x/day neurologist changed me to Requip XL no incidents since. cowmom27

[Hidden in reply to cowmom27]

Thanks! Guess mine was not a syncopal episode.

Twice I experienced something strange.

The first time I was sitting at a table with family eating. I realized that I could not move any part of my body. I could hear and see everything that was happening and was very much at peace. This didn’t last a minute, but my family was concerned enough they were about to call 911.

Because I didn’t want to lose my driver’s license I learned to make my brain actively think of many different things when I felt it coming. This worked.

The next time I was at PT, laying on my back and very relaxed. The same thing happened. They panicked and asked a nurse to give me oxygen.

My meds have been changed {I was taking Mirapex 3 times daily } and have not had any problems with this symptom since.

[Cerelia]

Tomorrow is the 10th anniversary of my diagnosis. I was 60, the average age apparently. It's good to know I'm average !! I was still working, as an occupational therapist, and in connection with my work was very involved with the Alzheimer's Society. Oh, the irony, I was supporting the wrong team ! I had lived alone since my divorce 16 years earlier, and had moved to a flat a few years before I was diagnosed. I've just moved again, into a new retirement complex, with a lot of facilities, and the option for care if it becomes necessary. I hope I won't live long enough to need others to do everything for me. Having reached what once seemed an ancient age, I still feel young and find it frustrating not to be able to move about as I used to. But I can still move about, can drive, and my heart, lungs and joints seem fine. It's just a tiny bit of my brain that misfires, That puts things in perspective, it's timny, and it's not going to beat me, even if I can't shake it off.