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Posted 9/29/2005 3:53 PM (GMT 0)

I am confused and exhausted since receiving my diagnoises of PD.  No one told me how to live with PD.  I am not sure what is PD and what is my imagination.  Since everyone is different it is hard to get myself regulated.  People either look at me like I am dying or they think it is no big deal.  I don't know how to feel and how to act.  Thank goodness I can just stay home and not worrry about work and things like that.  I am a stay at home grandma.  I guess I just need help to know what to think and how to live day to day. 

Posted 9/30/2005 5:29 AM (GMT 0)
Coalcar,

Glad you're here. Welcome!

 

How to think and what to do? The most important thing is to keep on doin'. Keep on doing what you love to do ... only more of it. My priorities changed. I do more of what I want to do .... what I enjoy. Who cares if the house is spotless ... unless that's what gives you pleasure. Learn to appreciate what you CAN do.

 

How do you live with PD? The same way you lived before. Nothing has changed. You are still you ... still enjoy the same things, friends, family, hobbies. Just spend more time doing what you enjoy . (Is there a theme here?)

 

It's true that your friends and family may try to understand ... but they really can't. Only those experiencing the same thing can (my opinion). I would encourage you to talk with others here or other online chats ... or support groups in your area - especially young onset support groups.

 

We are here for you. You are not alone.

lizzy4451

 

 

Posted 9/30/2005 3:27 PM (GMT 0)
Thank you for the reply. I needed it. Life is really strange right now. I am alone for 12 hours a day and can't drive cause meds make me sleepy and sometimes dopey. I spent 6 years taking care of
my father. He died in April. My sister that lived with me to help with dad moved to another city so I am alone except when my husband gets home from work at 7 p.m In July I was told I had PD which I can handle, its just everything at once. We moved here 4 years ago and with taking care of dad full time I haven't made any friends so I am really alone to figure this new life style out.
Thanks for your kindness
coalcar
Posted 10/1/2005 1:46 AM (GMT 0)
Hi and Welcome to HealingWell, coalcar! tongue

I just wanted to pop in and let you know that you are among friends here.  I found a site that you or anyone else here, may want to read! :)

I'm so sorry for your loss, after caring for your Dad, it must be very hard.  Then your sister moving...well, I can imagine it's difficult trying to figure things out.

Here's the link to the site I mentioned...

http://www.nlm.nih.gov/medlineplus/ency/article/000755.htm

My best to you!

Hugs, Teri :)

And remember, we're here for you!!

Posted 1/7/2006 9:59 PM (GMT 0)
I just tried to join and they said I already had. I had completely forgotten. I am still trying to figure life out but I doing better. I can't drive cause meds put to into weird sleep during the day. I am lucky to get 3-4 hours at night even with Lunesta. Good thing I don't work and can do things whenn I want to. I will be on more now that I have joined (again)
Coalcar (59 yr old grandma)
Posted 1/8/2006 1:11 AM (GMT 0)
Welcome back,glad u found us again,and I hope the meds are helping you.Sounds like u are still getting adjusted to them.If you don't mind me asking what meds are u on?I'm on stalevo(Sinemet + comtan) and mirapex.Mirapex works as an agonist much in the same way as requip does.Many on this site are on either requip or mirapex.many have learned a few methods of dealing with the sleep problem.maybe we will hear from those med vets out there.Ed a 61 yr old grandfather.Stay well and in touch.Ed
Posted 1/8/2006 1:34 PM (GMT 0)
Your fears are real..  I'm newly diagnosed as well.  Very scarey.  Lizzy just responded here on this site to one person... Maybe it was even you....

We didn't get to choose PD...But we CAN choose how we live with it.

I must agree with Liz and most of the folks you'll meet here...so I am

(1) Playing more racquette Ball....Not as fastas I used to...but I enjoy it anad I THINK it helps my balance....  Makes me fell good anyway...

(2) Not holding myself accountable for the worlds problems... I only watch the news ...once in a while.... I watch fun stuff... less stress...

(3) I Share with ppl on this site and the National Parkinsons Foundation Site.

(4)  I Educate myself through reading these postings, sharing experiences anad reading books on subject. 

The sad thing is its different for all of us.... ambiguous anda cunning...sort of like alcoholism...  BUT THE GOOD NEWS is we are here or each other... we pray for each other and there is always hope..

A guy yesterday summed it up for me...  "You'll be alright...just don't worry".  We can't predict the future...but we can choose to LIVE today to the fullest....  It's almost a release to just live well...

I hope this helps a little.   Try the chat site and know that you are not alone...

Larry

Posted 1/14/2006 2:57 AM (GMT 0)

It is wonderful to have people like you guys to talk to.  It is comforting.  I have always been the strong one in the family so I am not use to depending on others for a pat or a hug. I saw my neuro yesterday and she and her PA said I was on a lot of drugs. dah they put me on them.  I am on carbedope/levo and maripex plus gabapentin, tizanedine, lunesta, lexapro, xanix, and nortritylene.  Actually my gp put me on the last 4.  Any ways there is a bunch of them. Good thing I have pretty good insurance.  :-) I have seen many of the PD people have a slogan so I am looking for an uplifting one that remind me of all my blessings.  Thanks all for listening.

Marsha

Posted 1/14/2006 5:18 AM (GMT 0)
Marsha,

If you haven't done so I would get a second opinion,and consult with a pharmacist on your drugs.Gabapentin aka neurotin is an antiseizure drug .ive talked to people with pd for 5 yrs and you are the first person that has said they were on sinemet aka carb/lev and neurotin.Also a flag up on lexapro and xanax.I am not a Dr.but if I was on that many meds.I would make sure ther were no interactions.One small bit of advice the docs aren't always right up on the meds,and you live with PD so probably have greater knowledge about it then your gp.I'm not one to generrally give advice cause as they say wisemen dont need it and fools dont heed it.lolhappy hunting for a good slogan,and remember the light is always on Ed:)
Posted 1/14/2006 11:41 AM (GMT 0)
in July i went to the movement clinic in Houston at BAylor, they are suppose to be best in the world and they agreed with all the drugs, even doubled my mirapex.  it sure seems a lot to me also. I talked to a friend who is a phamisist and she seemed ok with them. they are wither going to kill me or heal me!   my neuro did suggest i cut the gabadetin in half which I will do.

I will continue checking the amount and kind of drugs they are giving me. 

thanks

Posted 1/14/2006 1:00 PM (GMT 0)
Marsha,

Glad to know that you checked out your meds.Sometimes we tend to place to much blind faith in our Docs,and don't take an active enough role in our own disease management.
Mirapex along with stalevo seems to work for me.Although mirapex seems to cause some problems with compulsive gambling with me I seem to be able to control that,or so I think.I won't take mirapex after 6pm or so so that seems to help the insomnia,and I try to avoid it an hour or so before driving.This stops the nodding off effect.
This opens up the whole area of timing for meds,and when they give you the best control,and fit your life style.With everyone different it is nice to see how others handle their medicationsStay well and in touch,glad you found us Ed
Posted 1/16/2006 3:15 PM (GMT 0)
Hi,

Thank for your replies.  Just side note of interest.  I started collecting dolls about 6 months  before I went on Mirapex.  I had several but not lots.  With in 7 monoth of starting the doll buying went crazy.  I now have over 100. My husband is  not happy about it.  It is killing me not to go on-line and order more.  Some of the dolls are quite expensive and others around $50 each but add them up and it is silly.  What a waste of his hard earned money. eyes I have heard of the gambling but not complusive doll buying.  I guess you can become compulsive about anything.

Marsha

p.s.

good thing i don't live inn Vegas anymore, i lived there 20 years and didn't gamble.  Maybe with mirapex i would.

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