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alberonn

"Newly" Diagnosed

29 posts in this topic

Only recently has my neurologist stated that my condition is actually Parkinson's. For the past couple of years I had to deal with the label of "idiopathic progressive polyneuropathy," which doesn't say much to most people. While it is still difficult for me to deal with, there was a small measure of relief for finally having an understandible name for my foe. I am just a little young for PD--44 now--and I'm working hard to finish my degree at Oregon State. The stress of school often brings out my tremors and those can go from mild shaking to--at the worst--damn near flailing. When I'm at the worst, I often feel like others are going to think I'm some sort of freak.

 

My neurologist put me on carbidopa levodopa early on, but I had to quit since it gave me severe nausea. He now has me on Ropinirole.

The recent news about Robin Williams has hit me hard since I also suffer from severe depression. The thought of my brain slowly degenerating terrifies me and can drag me down into that dark place where I do think about harming myself. I am happy that I do have a good therapist and a wife that loves me dearly. It has helped a lot but I can understand how easy it is to slip into despair. The medications I'm taking for my depression also helps. I have been having more good days than bad but even with all of the things that help me keep going, I do get hit hard sometimes and I can understand how Williams could reach that point of no return. The depression is an old foe and I have learned to deal with it as much as I can while PD is still somewhat new to me. I still am scared sh_tless about what is going to happen to me in the future.

 

The most noticeable symptom I have is my severe tremors. It started in my left arm/side--I'm a southpaw so that made things even more difficult--and more resently my right side has been hit with those tremors and is getting progressively worse as it seems to be trying to catch up with my left side. Handwriting can be difficult to impossible--signing my name is a struggle.

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Sorry to hear this. I'm newly diagnosed too, so I don't know nothin', but I have read that nausea is very common when you first start taking levadopa. I'm surprised your dr didn't have you try to work thru it?

At 44, I'm sure you are still working. You MUST try to exercise as much as you can. It's hard when you work, I know. But it's critical...

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TSD,

Iwanted to take a moment to say welcome, and I hope you feel comfortable here to post. There are some great folks here that have made this south paw feel welcome. Btw, my tremor is on my left side too. Like you, I am blesssed with a wonderful spouse who helps me tremendously through those rough times, but it is people here who live it day to day that I get a lot of advive from.

I hope you find peace.

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TSD,

Some people do have nausea with onset of sinemet treatment. This can be lessened in some cases by having your doc increase the percentage of carbidopa in the dosage. I've heard of some docs giving carbidopa alone as a loading dose before taking the levodopa. Carbidopa helps to prevent the early breakdown of levodopa before it enters the brain, and blocks the receptors that cause the nausea. Some say a drug called domperidone is very helpful in preventing nausea in PD treatment, but you'd have to get from somewhere other than the USA. Try searching the forums and you'll see similar info.

Hang in there, once you get your dopamine levels back up, and over the initial shock of the news, you'll most likely feel alot better and get on with life.

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Hello and welcome to the club. I know how you feel.

 

I dealt with nausea from sinemet for 8 months and it slowly got better. Now I only yawn or hiccup for about 20 minutes after the dose. I really don't function well without it. I also wrestled with depression for 3 years before diagnosis but feel like taking sinemet and exercising regularly have helped me to come off depression meds so don't give up hope that it's possible to come off those drugs. I hated depression meds, it felt like I was living life underwater in some giant bizarre aquarium. But they got me through some bad times and on to better days.

 

Like my friend TnDad says, after you get meds adjusted properly things function pretty well, and life keeps on keepin on. I hope you get dialed in quickly and have some tremor relief. Mine are almost entirely gone presently. Later, Jeff

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What about taking the carbi/levodopa combination drug called Stalevo??  The way the doc explained it to me one of the components is for the stomach.  My husband has never experienced nausea from it and it controls his tremors as well.

It is very scary to be in your position...newly diagnosed.  I remember what that was like.  I am so glad you have a good support system.  I hope you will get your meds straightened out very soon so that you can get on with your life.

Edited by elle

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Smokin,

 

I don't believe for a minute that PD caused Robin Williams to commit suicide.  He CHOSE to be a drug addict (like so many of his Hollywood friends).  He CHOSE to buy multiple expensive properties that he couldn't afford and ended up with severe financial problems (like so many of his Hollywood friends).  Finally, he CHOSE to take the easy way out and committed suicide (like so many of his Hollywood friends).  The victims here are his family and friends - not Robin Williams.  His poor choices killed him - not PD!

 

As for your fear of the future with PD, I would suggest trying to live by the Serenity Prayer which goes something like this:  'God give me the serenity to accept the things I can not change; the courage to change the things I can; and the wisdom to know the difference.'  I live by this little prayer.  There is absolutely nothing I can do about the future, so I don't worry about it.  I CAN slow the progression of my PD and improve my current physical condition through exercise, so I aggressively exercise.

 

Worrying about the future won't add even one day to your life.  It will only make you miserable.  You can CHOOSE to stop worrying and you can CHOOSE to slow the progression of your PD through exercise.  It's YOUR choice! 

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Welcome TSD, I to am a lefty with left side dominant PD........... Teresa? I didn't know that you were a lefty as well. That sure explains alot...lol

 

Ok We have a start. All us Lefty's need to get together, and take over...............  I don't know just what we'll take over, but we need to start.....LMAO

 

TSD? There's a lot of great folks here, and loads of good info. Although I do need to warn you, we tend to get a bit silly sometimes............

 

Ok, so any body have any ideas what we can take over???? I know....... Writing desks. Those silly desk chair combo's that are ALWAYS designed/built for rightys.........

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Smokin'... I was too recently diagnosed and the news this morning about Robin hit close to home.  I am 41 years old and to wonder and have worried about the possible later stages. I too have issues with depression/anxiety.  In the past I've ran to substances to attempt to "cope" with my issues only to make things worse.  Now since recently diagnosed I must make a choice. It's a fork in the road... Either fight this , or let it eat me alive.  As of now I have chose to fight this disease.  It's not the cards we get dealt in life that's important...It's how we play them. Hang in there. We're with you my friend !!

Edited by magma

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Welcome to the fight Magma- Happy to have you on our team- If you ever need to reach out do not hesitate. My best friend is clinically depressed- she said talking is critical . I hope she will always reach out because while PD scares the poop out of me- -losing her is so much worse.   

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Smokin', I choose to believe that science is close to solving the riddle and that new treatments will be helping us dramatically in the next 10 years. Some people here may dispute that (I actually received a private message from a member that said they "used to believe that too when they were first diagnosed, but now think it's a lie." That's real positive thinking...thanks for the message)

 

Just do everything you can to keep smiling and being hopeful. And again....EXERCISE!

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Smokin'- I too am on Ropinerole. If you have issues and want some advice on how to avoid some of the possible side effects let me know- I have some tricks o help with drowsiness and nausea and sleep. Hope it helps- I do really well on it.

 

Musicman- Glad you chose to stay hopeful and fight. 

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Smokin'

 

Welcome to the forum. You kinda entered the party when the emotions are on fire among our forum friends...which is good....cuz u will soon recognize the ebb and flow of the forum...and we feel safe among friends....so we all can say what we feel and know our thoughts are validated...

 

Smokin'...some unsolicited advice...which is rampant in these parts....listen deep to the regulars....they speak from experience...some times they speak from the place they are..whether in a deep blue well of depression...or the manic high of l dopa....so we all accept what they are saying at that particular "kodak moment"... A forum is a discussion..no one needs to be "right"....there does not need to be debate....nor do opinions need to dominate....

 

Sometimes a forum member who has YEARS of "positive thinking" posts...will one day explode and no longer be able to keep the "face" on ...and their emotion spills over into the forum...and we, who happen to have our l dopa on board and "feeling groovy" can smooth out the edges and through discussion and empathy help that member return to a balance......please do not judge us posters from one post.....and know that there is a level of acceptance here you will not find anywhere else...so, YOU have the option of posting when YOU are in a deep blue well and not feel that you are bringing others down......yes, we support each other...but we are REAL...and we know that none of us can always be lifting others....seeing the full glass of water all the time.....so I ask you to be patient with us....take the time to learn our personalities....and then you know there is a long history behind the paragraphs that throw out snippets of our emotions...

 

Smokin...I know suicide. I know depression. I know, unlike what others say, suicide is NOT always a choice, nor is it always selfish. I know that depression kills. If you have the courage to say your thoughts out loud...to let them actually come OUT...and you further have the courage to say it to a group of strangers......than continue to do so....And you need to know that you are safe here.....none of what you say will ever be taken lightly or disparaged.....what you say here will be validated ...please feel comfortable in sharing how you feel...while you transition into accepting the diagnosis.....we have been there.

 

Forum friends know I can seldom keep it to a paragraph...sorry...but I have to add, that I promise you the darkness you now feel will fade...I promise....allow yourself to grieve over the news for a bit...to say that doesn't happen is false...we ALL grieve ..and as some have said in the past, PD can cause you to grieve daily....denial only robs your energy....grieve for a bit...then after going through all those stages...I promise you WILL emerge stronger ..... And soon you will read a newbie's post and you will be able to reach out beyond yourself and take his arm....you'll recognize the naivety of the newbies who refuse to face reality and who pass judgement on others....and you will pray for them.......you will be able to be patient with others as they find there way in this jungle...

 

Smokin , be patient with yourself...as Billy Joel says, "wait til your second wind comes along...." Truthfully, I also find myself waiting.....

 

Welcome.

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Musicman- Glad you chose to stay hopeful and fight. 

Sorry Annikin, it turns out my hopefulness is just "the naivety of the newbies who refuse to face reality"

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New Normal,

 

I agree with a lot of what you said.  Of course, it is good for people that are depressed to talk it out and get help.  Having said that, I completely disagree with your statement that suicide is not always a choice.  Suicide is ALWAYS a choice.  A person can choose to kill themselves or they can choose to take another course.

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PatriotM,

 

Our opinions come from our level of life experience....that's why we have patience with others.......thanks for your input.

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Ok, will someone give NN a "blue greeters vest"? Well said dear, well said.

 

Musicman, I'm glad you're keeping positive. Remember though, that hopefulness has nothing to do with naivety. It is the belief that contrary to todays reality, Something good will come. For instance, I hope for world peace, do I expect it? No, but I still hope, even though I understand the reality of world politics.

 

Patriot, I agree with NN that suicide is NOT always the choice most people think it is. most people can't comprehend that though, because they have never experienced suicide up close and within their own family. Nor have they seen/experienced (hindsight is 20/20) the intimate details that lead up to suicide.  With a case like Robin's suicide, what you receive from the media is 95% hyperbole and speculation. A lot of woulda/coulda/shoulda.......... and very few actual facts.

 

If you want to know the realities of suicide, especially the intimate details and impacts thereof, talk to someone that has actually experienced it within their own close family. I warn you though, you'll find a lot of raw nerves and emotions, so you had better be prepared to actually LISTEN with an open heart.

 

So Patriot, if you want to actually learn about suicide, and not just repeat the uneducated what ifs and judgments, Talk to either NN or myself, as we HAVE experienced the pain of suicide within our respective families..... so can tell you first hand what it's all about. remember though, you'll need both an open heart, AND an open mind. 

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Wow, thank you to everyone for your support. I am doing well enough for now. Like I said, I have a good therapist and good medication to keep me going, but sometimes that depression kicks in and things start to look grim. For those that said suicide is always a choice, well they must have not been as far down as I have been. The depression distorts how you look at things and suicide starts to look like the only option you have. I don’t think a lot of people really understand the distortion in perception that you experience from the depression. I have been dealing with serious depression AND PTSD for a long time—I still don't know how I've managed to survive this long. Now I have things that give me a stronger anchor to life but my wife can tell you how scary it is when I really start to crash emotionally.

Part of my problem was the difficulty in getting a therapist in the first place. It took me years to finally get one since I moved to Salem. (I think this underscores the mental health crisis we have in the United States.) I wanted help before my tremors became severe enough to realize that something was going on. I have a lot of issues I was working on and Parkinson’s really didn’t help my emotional state. I also was in a living situation that was severely triggering my PTSD and my wife was wise enough to realize that the place we were living in was causing these difficulties. I couldn’t get help until shortly after all of this and I was in a dangerous low getting ready to die. At the time, I couldn’t see any other way.

As for the leva/carbo, I tried for quite a while but I couldn't get over the nausea. I do have some other issues that may have come into play—including my GERD. I also tend to suffer from chronic nausea without taking medication into account.

I am not working at this time since my wife laid down the law and told me that being a full-time college student is my job. I am currently an undergraduate at Oregon State University—as a non-traditional college student—and I’m majoring in English with a minor in writing. Sometimes my stuff comes out a little strong—especially if I’m writing autobiographical stories and I take time with what I am writing.

Right now, even though our finances are in the toilet, I am actually happier now and I think I’m doing better than I have been in a long time. I still have bad days, but I do what I can to keep myself going. It’s not easy but I’m getting there. Thinking about my PD does bring me down and I need to actually sit down and do some serious research—I think I’ve put it off since I’m afraid of what I’ll find. I'm starting to feel a little optimistic about our future.

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TSD? I think I'll add you to the small group here that truly understands suicide.Also, if you need anything holler, and I'll send you my phone number..... You're only a short hop down I-5, besides I have a cousin there in Salam. Stick around, and I hope you brought your sense of humor, 'cause you'll need it. 

 

Remember, we're here to help each other, not just when things are good, but also when things go sideways and get rough.

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I'm starting to feel a little optimistic about our future.

That's a very good thing! There's a lot more reason to be optimistic today than ever before.

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I'm neither a glass half full, nor half empty type of person. I'm an optimist, I believe the glass is FULL, it contains half water, and half air.....equals 100% FULL.

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Smokin

 

I appreciate your post...and your courage....it is one thing to talk the talk, but, you, my friend, are walking the walk.

 

It is funny how much can be said in a post...and your first post told me you had a lot of life experience..

 

Please continue to post...we need you.

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Welcome Smokin!  

 

Depression is hard to deal with (for me both personally and professionally) - as a therapist, I have seen the power of depression, addiction and what other such disorders have done to good people.  These afflictions do not seem to discriminate based on fame, income, social status, parenting style, etc.  As for Robin Williams, the issue is complicated - many media reports have said (almost with confident certainty) that he had depression way before Parkinson's, but I am not so sure that this is true, as medical professionals have learned that Parkinson's Disease brain chemistry changes happen years before the onset of symptoms.  Either way he was depressed and depression can and does distort one's perception - depression lies to you and tells you that there is nothing to look forward to and other things. 

 

I am a very positive person, but sometimes I sink deeply as I come to terms with disease, my future, my limitations and also as I ride the waves of ups and downs that PD creates in my brain.  Hang in there and we will both hopefully run into each other while hanging around in the "club"!

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TSD - Would you mind stating some of the symptoms that lead your Dr to a diagnosis of neuropathy? That is what my Dr. (thinks) I may have, but nowhere do I see a one sided resting tremor in any descriptions of neuropathy. My tremor is internal though, I also have abnormal electrical sensations all over my body, which I have read can occur with PD. This has all been going on for 5 years.

 

btw - I very much understand (clinical) depression, have been very deep in the well, very hard to get out of and once one does, have to be careful of those

"slippery" shoes, they make it easy to fall again.

Edited by invisable

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