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Parkinson's Disease
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Posted 3/28/2009 2:37 PM (GMT 0)
sad  I was just diagnosed with Parkinsons a few months ago.

 

I am very depressed and scared.  I just started with Sinemet, and it seems to be helping.

 

I just would like to talk to people, about how they handled it when they first found out.

 

Thanks

goofy1234
Posted 3/29/2009 4:03 PM (GMT 0)
I really need to chat with people.
Since I was diagnosed just a few months ago, ever since then, I have been depressed and very tired....I have NO desire to do anything.
I know the depression is caused by finding out about this, BUT I dont know if I am tired because of my medication or the disease..
I am on Requip XL and Sinemet 10/100.
I am also scared, because after reading some things online or in books, I dont know what to expect for me.

PLEASE reply, because I need some words of encouragement

Thanks
goofy 1234
Posted 3/30/2009 12:22 AM (GMT 0)
Goofy,Welcome to HealingWell.I assume you haven't been on requip or sinemet long.Requip is notorious for causing a tired feeling.It is however a very effective agonist often used in conjunction with sinemet.I'm on mirapex a sister drug and another agonist which when i first started it caused extreme tiredness.now many years later it doesn't have that effect anymore.It takes a fair amount of time for your body to get used to a new drug,so give it a fair shot,and make no changes without consulting your Dr.Now some words of encouragement:pd can generally be effectively controlled with meds,and you will gain knowledge over time on the best way to take,and get maximum return on a given dosage.A good diet,and exercise will definitely help slow the disease.Remember that you have pd it doesn't have you,and now some advice.Never ignore depression if you have symptoms of depression notify your Dr..It can be treated.I wish you the best,and I can always be reached at HealingWell.Ed
Posted 4/3/2009 6:46 AM (GMT 0)
Goofy, you've done a great thing by reaching out to others who are experiencing the same feelings you are feeling. You'll find that everyone with Parkinson's is unique. Unique symptoms and unique responses to medications. I think the two most important things are to: 1) find a qualified doctor that you trust and are comfortable with, and 2) educate yourself about Parkinson's - symptoms and meds. It's also important that you find support from family, friends, chat rooms, support groups - whatever your preference is.

 

Hopefully you see a neurologist vs. general practitioner. Better yet a movement disorder specialist (MDS - neurologist who specializes in movement disorders like Parkinson's).

 

I believe in educating yourself and working WITH your doc. You know your body and responses to medications better than anyone. Work WITH your doc in determining the best medications and dosages for you. Talk with your pharmacist about any issues in combining your PD meds with other meds or foods or ... whatever (for example Sinemet or Stalevo is less effective when taken at the same time as protein because they each fight to cross the blood brain barrier at the same time, causing the medication to be less effective).

 

I have been VERY fortunate to have had a slow progression. I was diagnosed 7.5 years ago and have had symptoms for about 10 years. I still work full-time and do everything I ever did ... just with a shake at times. I am a STRONG believer in exercise for people with Parkinson's. I have been involved in a boxing-based exercise program for people with Parkinson's for about 2.5 years. It's a tough program, but I believe it has made a difference.

 

Best of luck to you, goofy!

Posted 4/19/2009 8:58 PM (GMT 0)

We all start out pretty much the same..scared and confused. Your anxiety will get better. Here I've been diagnosed almost 6 yrs and I'm still kickin! I don't mean to minimize your pain  over this, but just stay proactive in your care,take your meds as prescribed and take heart that they are really working on a cure. M.J.F. is my champion! Don't get discouraged if a particlar med doesn't work out. The are  lots your neuro can do for you...each person is different and reacts in different ways. I am 59..and plan on being at my eightiesth birthday party. I've been on and off several types of meds, and it's just a  little tricky on gettting the right combination that works for each individual. I hope that you've found some helpful info from the PD community.  :-)   

Posted 4/26/2009 3:56 PM (GMT 0)
Hi Goofy, I'll tell you how my husband and I handled it when he was told he had it shall I? We said 'Rubbish' and went away. That was 4 years ago and finally he had a Dat Scan and we had to admit he had it. He is taking Azilect as his neuro says everyone should have it if they can take it as it can slow progression and Requip 2 and halfmg X3 a day. His main problem was writing and walking. His writing and fine movement is Ok now and walking a bit 'clumpy' sometimes but OK.Somehow I suppose it's been in our minds the last 4 years and we are resigned to it. We try and do the 'one day' things now in case 'one day' is impossible but other than that push it to the back. Maybe that is wrong and we need to face up to it. I just think 'He could have dropped dead' at least he's still here. Someone on this site calls it Krapinsons Disease and so we do. That lets it know it's place. Excercise is supposed to help and dancing especially so we dance regularly and have a lot of friends through that. We've only just started telling people and so many folk tell us of someone they know who have had PD for years and still doing well. It's so hard to tell isn't it as no two cases seems alike? I hope you feel better soon.

Posted 5/3/2009 10:15 PM (GMT 0)
Hi I was just diagnosed last July with young age early onset Parkinsons I can relate to the feeling of being scared.  I don't know much just how my body and mind seems to fail me at the best of times.But I have found that having a good support network is crucial to doing more than just survival!  As scary as it seems try to maintain a positive attitude.  I am a very young woman I have three steo daughters two sons and a daughter and a loving husband wo helps me keep a sense of being.
Posted 5/4/2009 9:43 PM (GMT 0)
[url] I have had PD for about 4 years. At first it was something I could handle, but as time goes on certain aspects of the disease sneek up on you and cause you much grief. For example, quit working, weight gain, gambling thanks to mirapex, sore legs, can't turn in bed, very little sex,exhaustion, and much more. But there are good things that happen, for example, I appreciat my wife, I'm more thankful for my family, appreciate a good friend who understands you, and ultimately more thankful to God for giving me the strength to get through the tough days. When one goes for a walk with ones grandson and he says he loves you even if you walk slowly with a cane, it somehow makes you feel good. So to those who are just starting on this road, yes it has potholes and the pavement is not always smooth, but the views are fantastic, because we choose to look up. Anyways tomorrow may be a better day and lets not forget to take our medicine!!
Posted 5/5/2009 6:52 PM (GMT 0)
Just a thought but it seems to me it's family and friends that seem to help the most. Even the friends we'll never meet like the ones who talk to us and give us support here.

Posted 5/6/2009 12:38 AM (GMT 0)
Sherwood,Thankyou for that post.You are 100% correct.Ed
Posted 5/25/2009 5:34 PM (GMT 0)

idea  goofy1234 said...
I really need to chat with people.
Since I was diagnosed just a few months ago, ever since then, I have been depressed and very tired....I have NO desire to do anything.
I know the depression is caused by finding out about this, BUT I dont know if I am tired because of my medication or the disease..
I am on Requip XL and Sinemet 10/100.
I am also scared, because after reading some things online or in books, I dont know what to expect for me.

PLEASE reply, because I need some words of encouragement

Thanks
goofy 1234

idea   Goofy 1234:  I feel for you.  These diseases are terrible.  Did you have a lot of tests to find out that it was PD?  I have Lyme Disease and go around and show a film about Lyme.  There is a young man in the film that had PD but got tested for Lyme and found out it was Lyme not PD. Also several others have been told they have PD but they found out it was Lyme.  Check all revenues.  Ask questions and believe in yourself and your gut feelings about what is happening in your body.  I am exhausted and depressed a lot and I know that it is part of my disease.  Give your pain over to a higher power, meditate try to relax when you are feeling bad.  Get on the internet and learn about Lyme and PD.  Talk to me, Emy L

Posted 5/25/2009 11:12 PM (GMT 0)
Goofy1234,you mentioned in a previous post that sinemet seemed to be helping.if so the dx was probably correct.I would get a second opinion from a movement disorder specialist.This is a neurologist that has gone on to specialize further.Requip and sinemet will tire you out especially when you have just started them.Wish you the best.Ed
Posted 1/11/2010 5:44 AM (GMT 0)

Emy L. said...

idea  goofy1234 said...
I really need to chat with people.
Since I was diagnosed just a few months ago, ever since then, I have been depressed and very tired....I have NO desire to do anything.
I know the depression is caused by finding out about this, BUT I dont know if I am tired because of my medication or the disease..
I am on Requip XL and Sinemet 10/100.
I am also scared, because after reading some things online or in books, I dont know what to expect for me.

PLEASE reply, because I need some words of encouragement

Thanks
goofy 1234

i am looking for the person who posted to this page about lyme...please contact me if possible tthresher at yahoo.com  thanks.....

idea   Goofy 1234:  I feel for you.  These diseases are terrible.  Did you have a lot of tests to find out that it was PD?  I have Lyme Disease and go around and show a film about Lyme.  There is a young man in the film that had PD but got tested for Lyme and found out it was Lyme not PD. Also several others have been told they have PD but they found out it was Lyme.  Check all revenues.  Ask questions and believe in yourself and your gut feelings about what is happening in your body.  I am exhausted and depressed a lot and I know that it is part of my disease.  Give your pain over to a higher power, meditate try to relax when you are feeling bad.  Get on the internet and learn about Lyme and PD.  Talk to me, Emy L

Posted 1/11/2010 5:45 AM (GMT 0)
hoo.com please
Posted 1/11/2010 5:47 AM (GMT 0)
i was diagnosed with pd also but was bit by a tick the same time all my symptoms started...anyone had the same experience?
Posted 1/11/2010 9:31 PM (GMT 0)
Hi Goofy, When I was first dx'd I was numb. It didn't seem real to me (despite the tremor in my right hand!). I thought, "It must be something else" (read, denial). Went for a slew of tests, got a second opinion from a well known specialist - and gradually came to accept. Anger was my second response, though - it was like Kubler-Ross' "stages of dying" reactions - if you're familiar with that. I pretty much went through all of them.

I also suffer from depression, general fatigue & lack of stamina. From reading up on PD I learned that 40 - 60% of persons w/ PD experience depression. Sometimes it's a symptom of PD itself (whacked-out neurotransmitters, etc.); sometimes it's our own response to the news that we have it. I've been prescribed Effexor for depression and Klonopin for anxiety in addition to Mirapex. In any case, keep reaching out. I'm new to this message board, but it helps me to feel less alone (despite the fact that I have a caring, understanding family). I can also echo everyone else's replies to you re. exercise, etc. Remember that everyone is different - from symptoms to progression to reaction to meds. Keeping a personal journal can be helpful for maintaining perspective and seeing your own thoughts and reactions. Hang in there, my friend.
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