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Posted 2/24/2012 11:22 PM (GMT 0)
Hi, I just signed up with HealingWell and am encouraged to have found this site. Not sure
I even hit the right "post" button but will get more familiar with the site in time. I was
diagnosed with pd in Sept of 2010 and it was a shock to say the least. I did go to a neurological
movement specialist and was put on requip which after a few months was not agreeing with me.
I am seeing another pd specialist on april 4th (my previous pd specialist no longer accepts our
insurance) and I liked her very much. Anyway, I wanted a second opinion in any case but am
pretty convinced that I do have pd, no right arm swing, right leg and hand tremors and handwriting
becoming smaller and smaller, very depressing. I would like to be able to look into what any of you
are taking that has the least side effects and be able to attend this appt. with intelligent questions
for this doctor. I have not taken any meds now for the past year and probably will need to start.
I think for a long time I have been in denial re the diagnosis, as I was a dancer, love to dance, but
feel my balance is a bit off sad to say. So glad I found this forum as I really do not discuss much of
what I'm dealing with with my husband or sons, as I don't want to worry them. Any advice I can
get here is appreciated, and I pray a lot!::! Thanks
Posted 2/25/2012 1:58 PM (GMT 0)
DeChantal..........................I have only been diagnosed for about six months now. Dont know if I have any advice other than at times when I start to feel depressed or start to stress about the cause or effects of my disease it only makes it worse. I try to stay active and most of all positive and it really seems to help. I know my pd wont ever go away, but everyday I can steal that is good or even decent is a blessing. How old are you and you say you havent been on any meds for a year so how are you doing? Tell us more and hope all goes well..........................................Colt
Posted 2/25/2012 8:03 PM (GMT 0)
DeChantal

You have the classic PD symmptoms. How about your sense of smell? Loss of smell is the very first symptom and can be decades before any orher symptoms. I lost my sense of smell at about 30 YO with no other PD symptoms until age 63. I take Azilect and Artane, one each per day. Azilect helps with most symptoms and is said to slow the progression of PD. The Artane stops the tremors. Now 4 1/2 years after the start of symptoms and 2 1/2 after diagnosis I do not feel that my PD has progressed. I believe in Azilect. It is very expensive, but to me it is worth every penny.

Dan

Posted 2/25/2012 9:35 PM (GMT 0)
Thanks for your input, I appreciate it.  I will be 65 in May and yes,

I lost my sense of smell years ago and assumed it was due to having my nose corterized from nose bleeds but now realize it was the onset

of pd.  I will look into the Azilect.  thanks.

Posted 3/1/2012 1:27 PM (GMT 0)

DeChantal,

Welcome to Healing Well. You are doing a great thing by educating yourself. Only you know what works best for you. You are your best advocate!

 

Those of us with PD often start out on one of the dopamine agonists - Mirapex or Requip. However, the significance of your symptoms, age and other factors can also influence that decision. The medication that unquestionably works the best is Sinemet or Stalevo (Sinemet with Comtan). Those medications generally - and everyone is different - work for about 5 years and can then begin to cause some significant side effects - dyskinesia, in particular. I am a proponent of delaying Sinemet as long as possible. But that is influenced by the fact that I was diagnosed in my early/mid 40's and have many years ahead of me. I am 'saving' Sinemet for the time when other meds are no longer effective. There also are medications geared towards specific symptoms - ex., Artane for tremor.

 

It's a personal choice. Just be sure it's an educated one. I commend you for being here and doing just that - educating yourself. No one understands PD like someone with the disease.

 

Best of luck,

lizzy4451

Posted 3/1/2012 4:23 PM (GMT 0)
lizzy

Not knowing any better my first neuro was not a MDS. Prescribed sinemet. Read about sinemet and "hitting the wall". Found a MDS. He agreed that sinemet should be saved for later. Doing very well on Azilect and artane.

Dan 

Posted 3/1/2012 9:16 PM (GMT 0)
Thanks for the good advice. I will continue to learn all that I can.
Posted 3/5/2012 11:05 PM (GMT 0)
Hi,

I feel praying is huge in helpng us deal with all these new challenges.

I was diagnosed in Nov 12, 2009 (at age 46 years young)and confirmed with a movement specialist Jan 27, 2010. the specialist called mine very very(he used two verys) young onset PD.
I have lost my sense of smell, I have a termor in my right hand(the one I write with) it is hard to write but I can write. I type the best. I have some balance issues but not alot, I have RLS(resless legs), depression. I am not sure if the follow is a side effect but I have trouble multi tasking.

Were you put on Requip for restless legs syndrom?
I have RLS. the regular Requip did not work well for me. it kept my legs from hurting most of the day but at night it was a killer.
so the dr put me on Requip XL. the XL means time released. this has work wonders for me.

did you mentioned you were depressed? may be I read it wrong.
My understanding of my depressions is it a symptom of PD, not because I am sad about having PD. does that make sense. I am on Imipram for depression and Deplin to enhance the depression meds. I know the Deplin is helping because I ran out and didn't refill for a couple of months. well silly me. Got it refilled and it works!

I also take Azilect. I take other meds for others things I have going on.

as we both know some days are up and some days are downers. i have found someone with PD that was diagnosed near the same time as me. it turns out we have so much in comom. it is like we are best friends and we have never met. she lives 1,000 miles away. I will meet her at the PD Unity Walk in NY City the end of April. I can't wait!. there is someone(s) you can connect with to share, cry, talk, and laugh with.

blessings


there are lots of igood nformation from good PD sites but you must go to the good ones.
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