Agonists/coenzyme Q10/dyskenesias

I've been told this week I definitely have Parkinson's.  I find I'm totally shocked and upset.  The neurologist would like to put me on an agonist.  Do these cause Dyskenesias?

I'm terrified of any drugs that long term could cause this.  So I want to stay off drugs if I can.

Nevertheless I feel pretty awful physically.  He has put me on antidepressants.  Also recomended co-enzyme Q10  is anyone taking that?

I just feel slow, tired, depressed and generally non-functioning emotionally.

Sometimes reading the posts here of end stage stuff frightens the life out of me and I don't know how to be positive!

Girlirish

Hi Girlish!

I can relate to feeling overwhelmed and not wanting to take any medication that can cause long-term side effects.  However, for me at least, the possible side effects were small in comparison to being disabled and the pain and suffering that I had to endure before going on the medications.  With medication I feel better than I have felt in quite a long time.  It has helped with so many areas of my life that I can not even begin to think of not taking the drugs. 

I realize that all of this is very scary and hard to deal with.  My advice is to find a doctor that you truly trust and enjoy working with.  Be very proactive in your treatment options and if one drug is not working well for you consult with your doctor to see what else you can try. Forums like this one also help me to cope.  It is really helpful to know that we do not suffer alone, and that we are not crazy.  (It can sometimes feel that way, when we develop a new symptom and we think we are the only ones to be dealing with it.)

I am not taking co-enzyme Q10, so I can not comment on how it works. 

I wish you well and God bless!  JB

hello girlirish , i know how you feel , but i am sure if you would just try the meds you will start to feel so much better and more positive .Today started very bad for me , realy shakey quite a lot of pain and also big switch off , BUT i took my meds also a sinamet ( my lifesaver ) went out in my chair with my daughter , it was raining cats and dogs , had my passport photo taken among other things and had a realy good day.Don,t think about what is at the end of all this, enjoy your life , i am here until i reach my goal which is 100 yrs , so i still have 20 to go. Keep smiling and the sun will always shine for you. Wish you well . Grace

Hi Girl Irish

The others have given you good advice.  Don't be afraid of the medications but treat them with caution as all drugs have their own consequences. My way of dealing with them is to manage on as low a dose as possible...by that I mean once you get established on your prescribed meds take them regularly, because they do work, but dont expect miracles.  You are going to feel out of sorts sometimes but try to get through those periods and look forward to better days.  If you go running to the doc every time you feel unwell you will most certainly get prescribed more drugs and eventually you may find that the side effects of the drugs are as bad as the illness.

I have been diagnosed with PD for 7 years and know that I had the start of it even before then. Sometimes I feel so tired that I find even the smallest tasks too much but I put up with it and look forward to the times when I feel better.  My first reaction to feeling unwell is NOT to look to more medications but to stick it out.  I made my mind up to keep control of the drugs I have to take when I saw the effects of long term Levadopa usage. We all need the drugs and I listen carefully to the neurologist and my doctor but it is only me who knows how I feel and if I can get a fairly good quality of life without increasing the dose then thats what matters to me.

Try not to get uptight as anxiety is an enemy of people with PD.  I am sure that once the medication you are given starts to work you will feel better and as Grace said...keep smiling and the sun will shine on you. 

PS. a little prayer helps me and I will put in a good word for you next time I speak to HIM

God Bless

BILLY

Hello again GirlIrish

Feeling unwell can take on many different forms simply because PD affects people in so many different ways. I belong to a support group where some do not have any tremor but can hardly walk due to stiffness and others have speech problems and yet some do not.  From what I can see of those 30 people with PD no two are exactly alike excepting that they all complain of tiredness, fatigue or what ever you like to label that feeling where sometimes you can't find the energy to raise your head.

So don't go thinking the worst is going to happen to you because thats unlikely.  There are some in the group who have had PD for 15 years or more and an outsider would hardly notice. So keep smiling and dont get anxious because that will make you feel down and tired.

I am going through a phase where I feel quite good.  I do not feel so tired as I usually do so am making the most of it.  When the old tiredness comes back I will just look forward to the next time I am feeling ok.

Cannot give you a proper definition of how I feel when unwell because I also have quite serious kidney failure and expect to start dialysis in the coming months.  This means that I cannot tell what part of my unwellness is due to the kidney or the PD.  But take it from me and others who replied to you YOU WON'T ALWAYS FEEL BAD.

Keep in touch with your progress

God Bless

BILLY

Girlish, One of your initial questions was regarding agonists and dyskinesia. I'm not sure you received an answer.

Many newbies start on a dopamine agonist. This includes Requip and Mirapex - the most commonly prescribed agonists in the US. As indicated, another medication that was recently FDA approved is Azilect AKA Rasagaline. It is not in the agonist family. There is some indication that Azilect may slow the progression of PD. It has other advantages like you only take it once a day.

Dyskinesia primarily (or soley?) is caused by Sinemet. Sinemet is the granddaddy of alll treatment alternatives ... unquestionably works the best. However, it often becomes less effective after 5 years and tends to cause dyskinesia after 5 years. Both become more pronounced over time. Everyone reacts differently to PD meds ... and Sinemet is no different. Some tolerate it well for 20 years. Some much less.

I would encourage you to educate yourself about your alternatives. You are your own best advocate. Find a good movement disorder specialist (MDS -neuro who specializes in movement disorders like PD). Work WITH your MDS. Best of luck to you.

lizzy4451 (having issues with lizzy4451 email right now)

Dear Girlish,

        I have been reading the posts with intrest. I do have one question for everyone, why do I have so much trouble with the definitions of words? I was a medical transcriptionist, special care aide, Home Care scheduler, etc. Yet I seem to be having trouble understanding some of you symptoms. I'm only 47 and haven't been on much medication at all. What do I have PD or Alzheimer's.

Rey

I wan also shocked when I knew that I have PD. Bu t I have learn to live with it. What can you do, it's already in your body. You have to live with it and make your best to enjoy life everyday. But don't be afraid of any medication. They have more benefits than side effects. If it's not working right with you you can always change it for for a better one. There's a lot of alternative treatment nowadays. Don't give up, keep fighting. LIfe is beautiful inspite of PD.