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Parkinson's Disease
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Posted 3/15/2012 9:42 PM (GMT 0)
Having only been diagnosed for about 8 months my symptoms have progressed fairly fast.  My neuro recently put me back on Sinemet 25/100 three times daily along with Mirapex .25 three times daily after a freezing episode which caused me to have a serious accident at work.  Since being back on sinemet I have been doing really well but I know long term use can cause serious side effects.  Kinda torn, Im only 40 and I have to work and dont really have any other skills except for what I currently do.  Im curious if anybody can tell me how long it took for sinemet long term effects to show up.  My thinking is if it can buy me 5 or 6 more years of work to at least get my kids through school thats the way to go......................Colt
Posted 3/15/2012 11:46 PM (GMT 0)
Can't generalize or speak for others,and all react differently to any given med.Having said that I will say that I have been on sinemet(stalevo),and mirapex for at least 12 years,and they both allow me in most cases to carry on daily activities.Itake stalevo 100 and .75 mirapex 4 times a day.I do get occasional freezing episodes,and when the meds wear off after about 3 hrs it is pretty hard for me to get around.I will point out that once you start these meds don't quit them without consulting with your neuro.You'll need to taper off them gradually.Wish you the best,and stay in touch.Ed
Posted 3/18/2012 9:38 PM (GMT 0)
Thanks Ed. Do you have problems with dyskinisea, not sure about spelling. If so is it disabling. Can you tell me if you were able to work first few years while on sinemet. My job is fairly physical and involves operating forklift machinery. I know there is no way of knowing for certain but I'm trying to get some idea of how long I'll be able to continue if I stay on sinemet
Posted 3/19/2012 12:49 AM (GMT 0)
I have a minor problem with minor dysinesia in my jaw.Annoying but not disabling.I worked for 7 or 8 years on sinemet before retiring.
The first few years I could work without it.The last 4-5 years I could not.I then applied for ssdi which I was sucessful in obtaining.Ed
Posted 3/19/2012 6:14 PM (GMT 0)
Hi Colt, I'm 47, i've just started on sinemet 100 a couple of months ago 2 pills a day. Ed is so right about getting off them gently i recently missed a couple because the chemist had to order them in for me and it took a couple of days.. not fun. lots of stiffness and vomitting.
When the neurologist gave them to me he told me it would give me a good 4-5 years. Hoping for you that would give you long enough to get the kids through school.. I bet it's different for everyone though. best of luck,

Karen
Posted 5/18/2012 9:01 AM (GMT 0)
Can anyone help me with Disability questions? My 56 yr. old husband is working - IF he qualified for Disability (and I think he could even now) - is it true that you have NO health coverage (except expensive cobra) for two years even if you are on diability??
Posted 5/18/2012 9:48 PM (GMT 0)
I was first diagnosed with PD at age 64. The general neuro prescribed sinemet. After reading the side effects and doing some research I decided that I would rather try Azilect. It has been shown to slow the progression of PD. Neuro refused. HE SAID IT IS TOO EXPENSIVE. Went to a movement disorder neuro. He agreed that it is best to leave sinemet for later. I am now 68 and have seen very little if any progression. I do have right hand tremors but Artane helps with that. Azilect is expensive. Right now retail price is $12.15 each, one a day. On medicare. I will hit the donut hole in July. Azilect will cost me $6.15 a day. 

Worth every penny to me.
Dan

Post Edited (polishdan) : 5/18/2012 3:57:43 PM (GMT-6)

Posted 5/27/2012 11:54 AM (GMT 0)
i have been on Aziletc for about 4 weeks now. Still taking sinemet four times a day and mirapex three times a day. Noticing some improvements but Im not sure if its the Azilect or the continual increasing of sinemet dosage. I am just this week now on short term disability as neuro wont release me to operate heavy machinery after three months of restricted duty. Dont know if going back to that job is ever very realistic but hopefully improvements will continue so Im able to as this is only skill I really have. Colt
Posted 5/27/2012 11:53 PM (GMT 0)
Colt
Is your plan to decrease or eliminate the sinemet and/or mirapex?

Dan
Posted 5/28/2012 12:45 AM (GMT 0)
Dan                    Dont really know.  After waiting for about 3 months to get in Im finally going to see a movement disorder specialist next week.   Not really sure what his plan will be but I know I was pretty bad before I went back on sinemet.  My goal is to get back to work whatever it takes...............Colt

                                                                                                                                                                                                                                                                                                               

Posted 5/28/2012 1:05 AM (GMT 0)
Colt
Please post what the MDS has to say.

Dan
Posted 5/28/2012 10:19 AM (GMT 0)
Empty nest,Sorry I missed your post,and question.With social security disability (SSDI)you will go on medicare 2 years after your entitlement date.With SSI you will be eligible for medicaide immediately.
You need to make an appointment with your nearest social security office.If you have PDand,can't work,and you do not get on ssdi hire a lawyer who specializes in this area.Most don't charge unless you receive ssdi,and then they charge a % of your first check which is generally back dated. Wish you the best.Ed
Posted 6/8/2012 12:55 PM (GMT 0)
Dan,  You asked me to respond about visit to mds about whether he plans to eliminate sinemet.  Well acually he increased it now Im taking 1 &1/2 every 4 hrs.  After doing several movement exams and also cognitive tests along with the negative response to drug therapy he didnt acually come out and say it but he suspects parkinsons plus syndrome possibly MSA.  Think his plan is to push drug therapy as far as we can to see if it does any good before he goes in another direction.  Thank you for all of your advice and for listening................Colt
Posted 7/3/2012 8:03 PM (GMT 0)
excuse me but im 16 and i hve parkinsons already..i havent been medicated yet, i think i lreqdy had early symptoms since 13 or 14..i am not sure what stage i am at but at this very moment i have experienced loss control of my left arms (usually) right(ocaasionally) and loss of balance. I CAN stop the trembling if i stay still sometimes and clench onto somwthing but if i lose that control i can get a really bad tremble where it feels as though im having a seizure, lige is so hard for me...i always have to tell my friends to walk ahead of me because sometimes i just stop there and not move, i would pull outmy cell phone pretending im doing something hen im not..i tell my friends that im crampingor was cramping if they see a trembling attack. right now i feel pretty depressed on why am i so "lucky" to be the one out of the millions of people ho have this disease..and why my early ages of life?...i read that theres medication i can take to slow its progression bit theres side effects and also im afraid of when will the medications become ineffective..since im this young wont the medications become ineffective by the time 30?..i really hate this..
i hid this disease for a good 2 years until my mom saw a bad attack(kneelingn the floorswithtrembling hands movements and head shaking...i just hatehis disease and just want to end my life sometimes...sigh.. i have a girlfriend too..and she saw me have bad cases of the disease before and i told her that i was just cramping..i have no one really..to talk to this about..i do my own researches and doctor hasnt even perscribed me yet..sighh
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