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Newly diagnosed - Extreme exhastion will it get better?

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Parkinson's Disease
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Posted 4/19/2006 4:13 PM (GMT 0)
My husband was recently diagnosed.  He is taking Amantadine with some results but he is soooo exhausted.  Is that normal?  Will it get better?
Posted 4/22/2006 5:23 AM (GMT 0)
Tami:
Is he on just the Amantadine? I get tired and yawn frequently as I'm coming back "on" meds to the point I know not to drive during those times! I am on Simenet and Requip and have been maintaining fairly well. I was dx 12/04. The trick is finding the right dosage that works and keeping it regulated. He will soon find out what works for him. My Neuro said I'm my own Dr to an extent. I believe most doctors and patients error in under medicating as opposed to taking too much.
Good luck and remember to take one day at a time ••••
Pelley
Posted 4/22/2006 11:48 AM (GMT 0)
Thanks Pelley. Yes, he is only on the amantadine. I am going to email his Dr. about seeing him sooner than we are scheduled for. He has also lost 15 pounds. That has me worried too. I will ask his doc about adding other meds.
thanks again
Posted 4/23/2006 10:18 PM (GMT 0)
Hi Tami,  I wanted to tell you welcome to Healing Well forum.  I am sorry about your husbands diagnosis.  I know it must be really hard.  I was on amantadine two years ago, my neuro prescribed it before my MSA diagnosis.  I also have Multiple Sclerosis.  The amantadine didnt work out too well for me.  A lot of times doctors do have to adjust the medication regime in order to find what is going to be what works best.  I would most definitely contact his physician.  Please do keep us updated on how he is doing.
Posted 4/24/2006 12:06 PM (GMT 0)
Elisha
Do you have Multiple System Atrophy? If so, how did your Dr come to that conclusion. I am worried because he just isn't getting better. I emailed his doc and he is going to prescribe something in addition to the Amantadine. Thanks...
Posted 4/24/2006 2:59 PM (GMT 0)
Hi Tami,  Yes, I have Multiple System Atrophy I am 32 years old and a female...which is very odd for this disease.  I had to travel to TN to Vanderbilt University to see a Movement Disorder Specialist who diagnosed it.  I dont take any of the Parkinson's meds as my doctors have a hard time getting my blood pressure regulated.  It is very low and I pass out often from it.  Do you think your husband may have MSA?  If so he should see a MDS for it.  Either way he probably should be on something other than amantadine.  Take care...
Posted 4/24/2006 3:10 PM (GMT 0)
Elisha
I just don't know. Maybe he hasn't been on the meds long enough to give them a chance..
thanks
tami
Posted 4/24/2006 10:28 PM (GMT 0)
Tami,

Welcome to healing Well.After reading your post my first thought was has your husband gotten a second opinion?If not I would make that a high prority..Amantadine doesn't work for all,and can cause adverse reactions in some.Most newly dx pders have to go thru a tune up process adjusting meds and dosage over time.here is where a good neuro is important.After 8 yrs with pd i'm still adjusting mine.Pd meds are not easy to get use to,and most make you tired .A question we all ask are the meds worse then the disease.However having said that over time your body adjusts to the meds,and hopefully they help.Wish you and your husband the best,and feel free to e-mail me if you have any questions.Ed
Posted 4/27/2006 2:39 PM (GMT 0)

Ed

Thank you.  His doctor is going to add a new medicine this weekend.  We are starting to realize that he has had this much longer than we originally thought.  He is just trying to keep working, but his job is so high stress.  That is making his symptoms worse...  He had a good day yesterday.  First one in a long time.  I hope that is a good sign with the amantadine.

Tami

Posted 5/2/2006 9:33 AM (GMT 0)
Tami

Sorry to hear about your problems. I really do hope that your husband starts to feel better soon.

I dont want to give conflicting views and make things even harder for you but from my own experience and  observations of others in our support group here in Chelmsford UK I must disagree with Pelley who says 'Drs and patients error in under medicating.'  It is well known that PD meds have their own consequences and as Ed said in his post to you 'are meds worse than the disease'.  He also said that our bodies, overtime, adjust to the meds and, herein is the problem we all face and that is, should we keep increasing the dose in order to make us feel better? The answer to that surely is yes but only with consideration to the long term effects.  No one knows how an individual PD sufferer feels except that patient themselves and, sometimes, I feel so awful, tired, fatigued and full of anxiety that the urge to fix an appointment to see my neuro and have him give me something more to make me feel better is overwhelming.  But I hang on and trust to God that the down period that makes me feel so bad starts levelling out and I will start feeling relatively better.  I take this course because I know (and this is my personal way of dealing with my illness and not one I would advise anyone to adopt without consulting their dr) that I will feel better in the short term if I up the dose but that my body will get used to it and I will be back to square one. Its hard to accept but when you have PD,  or any other chronic illness, come to that, you are going to feel ill and thats the cards you have been dealt and you have to get on with it the best you can. Thats a hard thing to say to someone new to an illness that is not going to go away and it does not mean that you should not take advantage of the meds that DO make you feel better, only that given the long term consequences ALL medications should be treated with caution.

I hope you who read this post dont think I'm being contentious and I would wellcome hearing from anyone with an opposite point of view

God Bless

BILLY 

Posted 5/2/2006 12:14 PM (GMT 0)
Med adjustment may include decreasing as well as increasing,and changing the timing.For ex ample if I am having a bad day i can increase my stalevo,and conversly on a good day decrease.My neuro encourages this in my INDIVIDUAL case.With timing when I take the meds is important.To close to bed time and i find my self wide awake or waking up to soon.Then the meds themselves can be varied .While driving I tend to hold back on the mirapex till I get where I'm going to avoid drowsiness.This experimenting till you find your own best combo,which I might add differs in all, becomes one method in control.However check with your Neuro before making any changes.ED
Posted 5/3/2006 7:04 PM (GMT 0)
Tami:

Have had computer problems for WEEKS! And it's finally working! What is your personal email address again?? \

Laura W ([email protected])
Posted 6/4/2006 9:55 AM (GMT 0)
Billy this morning i was grateful to read your post about the terrible days which we all suffer with, you have explained how and why and the fact that we have to deal with the cards we have been dealt with in a plain and posotive way,now i won't be so scared on the realy bad days . many thanks my friend and by the way it's nice to speak to another English person .
Regards Grace L
Posted 6/7/2006 4:19 PM (GMT 0)

GRACE

sorry I did not see your message sooner but I was away. Those good periods I mentioned are what keep me going....when I get really bad I kid myself that it wont last long and have a little prayer and sometimes a little cry.  Eventually I reealise that I am feeling good and make the most of it and hope it lasts.  Examine how you feel each day and try to make the feelgood days last by trying not to think about PD.

Nice to have contact with you

All the best BILLY

Posted 7/3/2006 6:29 PM (GMT 0)
Hello Tami,
My husband also has been on Amanadine for the past 9 months. He takes it 3xdaily. The good news was there isn't any side effects with it like he had previously with requip. The not so good news, he was so very fatiqued and becoming weaker.

Last month we saw a new specialist and he gave my husband Senemet 1/2 pill twice a day and can increase to 3x's a day if needed along with the Admanadine. I can't believe the difference in my husband. His facial expression have changed for the better, he moves better, and most of all the awful weakness in his legs is gone. He couldn't even go to work the last week before seeing the specialist. He has more energy and therefore has become more active.
Posted 7/23/2006 12:08 PM (GMT 0)
Billy, I'm in London, UK, a NEW PDer. I woke this morning and was very tired and depressed. I believe this is PART of PD? I looked at your post and it helped me very much. I guess I have to say "OK a bad day, tomorrow may be better", but I'm trying to finish my PhD and I am so exhausted thats difficult.

How do you complete major studies when so darn tired! I'm not on medication as very early stages and neurologist wanted to hold off....so do I.

Girlirish
Posted 9/19/2006 5:01 PM (GMT 0)
Billy,

I too have been away and I am just catching up with your post , Thank you so very much for your advice, last week was very bad but I know all I have to do is read your post and it puts that smile back on my face . It is as good as a dose of meds if not better. I am very grateful to you, thank you once again.

Grace L
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