sleeping: i have just been told i have... - Cure Parkinson's

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dal57 profile image
17 Replies

i have just been told i have parkinsons.i was told in august.so much has changed in my life i dont really understand.i dont really sleep much any more.i have been so depressed aand angry about it.and the sinemet i take dont really work.and the vivid nightmares are real scarry.im just scared about the whole thing.and confused.i guess thats all i have to say right now.im glad i found this site to help me vent ty for listening to me

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dal57
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17 Replies
Carrigan profile image
Carrigan

Sorry to here your news and welcome to the sie. My husband has pd 17-18yrx now and has hadto put up with all sorts of symptoms, but still striving not easy but has coped well , talk to some who have the disease I am sure it helps, you will have some better days I am sure .Take care and good luck x

Carrigan profile image
Carrigan

Sorry I ment welcome to this site we are not a bad lot x

etterus profile image
etterus

While it's never fun to hear that you have a disease that is described as "progressive", there is much worse than PD. This site has so much to offer in ways to live the best life possible and support and be supported by others. There's an art to living... losing gracefully. It's true for all with or without PD.

Norton1 profile image
Norton1

Hello Dal57,

Welcome to this site where you are amongst friends.

It is perfectly normal, so soon after diagnosis, to feel depressed and out of your depth. Please be reassured that having Parkinson's is not the end of your world and that you have more living to do. You can still go out socially and have holidays if that is your thing. You can improve the quality of your sleep. Sinemet is not the only Parkinson's medication there is, but it could be that you need to increase your dose after consulting with either your nurse, GP or neurologist and get the timing of taking the sinemet right. Consider getting a book written by a Parkinson's patient (there are several excellent ones) to get an idea how they have coped. Continue to visit this site regularly to gain inspiration.

I can honestly say that I would rather not have Parkinson's, but I can also say that I have met some great people, both online and in my locality, who are in the same position as me whom I count as good friends and can speak with at a deeper level than others I know.

No, your life can become richer if you are prepared to let it!

Hope to hear from you again soon.

Kind regards

Norton

dal57 profile image
dal57 in reply to Norton1

ty for the idea of getting a book on peoplee with parkinsons.i will check that out

driller profile image
driller

Sorry this has happened,but the more you learn about PD the better you will understand how to fight it. One thing try and find a suport group in your area and join,talking with people will hwlp.

Regards;

ERIC

jillannf6 profile image
jillannf6

HI DAL57

I SAY WELCOME TO THE SITE - I HAVE PSP (NO MEDS TO TAKE FOR IT ANS HTUS NO SIDE EFFECTS)

BUT IT COULD EB A LTO WORSE....

LOL jiLL

:-)

STICK WIHT US ADN WE SHALL SOON BE HAVING AN ONLIEN PARTY

dal57 profile image
dal57 in reply to jillannf6

lol i love parties

CJ49 profile image
CJ49

Hello and "Welcome!" You will find this site to be "very helpful" and friendly....(it's nice to know that "you are not alone.")

Another site to visit would be pdf.org....you can find all sorts of facts and answers there.

Take care and stay positive! :)

I think you can cope with almost anything if you have a good sleep, but often a few nights for some reason will be sleepless, I can imagine how you feel in a morning. I would not dare say how I feel when it happens to me It is unprintable.

If you find that the Sinamet is not working for you have a word with the doc. you may need a change of medication.

dal57 profile image
dal57 in reply to

yea i dont think it is working.i have a doc.apt in march.i will talk to him about it

PatV profile image
PatV

Yes, and talk about sleep meds too. It's worth it. Ambien gave me nightmares, don't recommend it. Xanax works for 3-4 hours. Klonopin usually works for me taken with melatonin and valerian. Maybe you can try the last 2 -- they are OTC. Life's not over. How old are you and what were your symptoms? We are a varied lot. As someone said in my PD dance class (yes, they are so much fun and many YOPDs in mine) it's a designer disease.

srarndt profile image
srarndt

Hi dal,

Welcome, pleased to have you!

Whatever symptoms you're dealing with are not any fun, I am sure. There truly are some wonderful words of wistom in the replies above! That is because most folks on here are very understanding, empathetic and wise.

You'll likely also find numerouse discussions that have taken place sometime not too terribly long ago (still fresh enough to get lots of value from reading them) about how to cope with, diminish or rectify some of the symptoms you're dealing with now or that you might develop as we move forward together.

For example, try this - if you have not already done so: Scroll to the top of this page and click on the wordlink "SEARCH" and enter the symptom you would like to know more about (like "Sleep" for example). You might well find a plethora of ideas on how others of us have dealt with the issue you've searched for

Best wishes!

Steve

Bisbee, AZ

kavanman profile image
kavanman

hi, Its alright to be scared its a challenge for you now cos it takes time to come to terms with ur condition,but u did the right thing contacting thjis site, we are all in this together you are not alone.Be open to joining parkinsons help groups and arm yourself with as much info as you can from legitamite sources like this site and in time as you learn to fight back you will see that u still have a lot to offer and a full life to live good luck kavanman

Annie81963 profile image
Annie81963

Hello and welcome fellow Parki!! You will love this site,informative and friendly. I recommend Ativan for sleep,I take it only when needed .I would ask your dr. about it, it might work for you.

Knowledge is power,the more you know the better you will be.We have PD it does not have us!!

jillannf6 profile image
jillannf6

Hi dai welcome to the site,!

more later

Lol

Jill

:-)

Bestlifeever profile image
Bestlifeever

It is what iis. Live your life to the fullest and excerdise and eat right. Because it isn’t the length of time you live it is the quality of life that you live.

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