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Jlc

Life expectancy

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So... Everything I read and am told says that a diagnosis of yopd does not affect life expectancy. I even asked Dr. Okun and he said that with good management, it is likely that I would expire from something else.

 

 

I feel that it is unlikely that someone who is diagnosed with yopd at 30 could expect to live to 80...is that just me?????

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I feel that it is unlikely that someone who is diagnosed with yopd at 30 could expect to live to 80...is that just me?????

Didn't you just try to bet someone $500 in another post that there would be a cure for PD in less than 10 years? If so, then PD certainly won't keep you from living to 80!

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Anthony, I really appreciate your comment... it was an eye opener and you are right.

 

 

Elmstreet, that is what I've heard as well. I would expect that, for someone who is diagnosed at a young age, complications would result in death prior to normal life expectancy... but apparently that isn't the case.

 

 

Patriot... I really do think that treatment will drastically change in the next 10 years. I have read so much material on pd research that I could probably host a conference on the topic of future treatment. I'm not sure how much you have read, but everything from replacing damaged brain tissue with pigs brain tissue to the potential for Dbs type surgery to be even more beneficial in the future is in the news. I really think the future is bright.

 

 

Another point is that things like Dbs (around since 1997) and the duodopa pump (around since 2002 in Europe) give an approximate addition of 10 productive years after oral therapy is no longer effective. So... we have antagonists that can last between 1 and 5 years (give or take a couple), sinemet which can last upwards of 20 years and then Dbs and duodopa which can go another 10 years. That alone brings me to 65. All we need is advancement in medicine that can give me another 10 years and I'm 75 and happier than a pig in poop.

 

 

I know this is somewhat wishful thinking, but movement disorder specialists state that most cases of yopd are very manageable, so I will hope that the above mentioned scenario is my future.

 

There is also a treatment in clinical trials called Prosavin that basically tricks your brain into making its own dopamine. If this becomes treatment, I have high hopes that it will give me those extra 10 years.

 

 

Cheers everyone,

 

 

James

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James, I know your concerned about your future but it sounds to me as though you are putting the cart before the horse.  Your spending way to much time researching a disease you don't even know if you have.  Your young, you should be living your life, not fretting over the unknown.  If you have PD, it will rear its ugly head. You can not hide from it.  My suggestion would be to go out and live your life.  You could easily be hit by truck tomorrow or next week, then where did all this worrying get you?

 

Dave

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Thanks Dave. I spend a lot of time researching because I have been ordered off work. I would definitely rather do something else, but have become very pre-occupied due to the fact that doctors are telling me I am making all of this up. I'm trying to gather as much information as possible before my neurologist appointment next month.

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James,

 

The problem with having vague and non-classic neurological symptoms is that they could be any of a large variety of diseases. Worse yet, it could be a decade or more before you are diagnosed (if ever). Even worse than all that is that these pinhead doctors love to blame the patient when they can't find an easy answer. I'm not saying that to discourage you, but rather to tell you that Dave is exactly right - you've got to live your life and not let these symptoms take over your live. Be prepared for the neurologist to not offer a diagnosis in November and be prepared for him to say that it's all in your head. If you know that you're having real symptoms, then don't allow any doctor to convince you that you're crazy.

 

Live your life and see what happens. If your symptoms worsen, at some point they will be able to diagnose you with something, but that could be years or decades down the road. Don't let a few tremors steal your life!!!

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James,

 

The problem with having vague and non-classic neurological symptoms is that they could be any of a large variety of diseases. Worse yet, it could be a decade or more before you are diagnosed (if ever). Even worse than all that is that these pinhead doctors love to blame the patient when they can't find an easy answer. I'm not saying that to discourage you, but rather to tell you that Dave is exactly right - you've got to live your life and not let these symptoms take over your live. Be prepared for the neurologist to not offer a diagnosis in November and be prepared for him to say that it's all in your head. If you know that you're having real symptoms, then don't allow any doctor to convince you that you're crazy.

 

Live your life and see what happens. If your symptoms worsen, at some point they will be able to diagnose you with something, but that could be years or decades down the road. Don't let a few tre. wrs steal your life!!!

James,

I agree. My doctors were total dumbasses and refused to admit that i wasent crazy... but whats new when my gallbladder stopped functioning they refused to believe me till one dr did a hida scan. I went to the ER with pain in my upper left abdomen that spread to my lower right side then to my back. They checked for kidney stones and found that i had appendicitis. Then i went to the dr a month ago with pain in my lower right ovary area they sent me to get an abdomen ultrasound.. i get there and she was doing the ultrasound and i said wait what arr i doing my pain isnt there. She responded I'm checking for gallstones. .. I said well I won't find that I have no gallbladder. Doctors should be paying me for being smarter then them... anyways yeah I have a cist on my right ovary. I am far from crazy. But definitely expexct a million diagnosis and run arounds esp if u are seeing a reg Neurologist u really should see a MDS. Sorry for adding to ur post. Haha hope yall have a good night Well its night here anyways.

Edited by chelle

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Patriot, I agree and need to realize that I have no choice but to wait for progression. It's a hard thing to accept though. I have pain and fatigue that is affecting my quality of life.

 

 

Chelle, your story is amazing. Some of us have been through such ridiculous circumstances and situations. You seem like a fighter and I think you inspire me, so thank you.

 

 

If anyone ever needs some inspiration, check out a woman by the name of Allison Conway (YouTube or Google). This young lady suffered from juvenile rheumatoid arthritis, then diverticulitis, then colon cancer. She had to have her entire large intestine removed and required 14 surgeries. She beat the cancer and then at 32 was diagnosed with pd. She is exceedingly positive, is a pd advocate and has also written a book about her life. Check her out if you need a boost.

 

 

James

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hey I understand your concerns but hey we are not guaranteed tomorrow guys, we could get in a car and get into an accident so does this mean we stay out of our cars and hide in our houses, oh wait our houses might catch fire so should we just shut down all together, I am sorry if I sound like I am upset I am not, its just life is precious, if you have a loved one around hug them if you are a loved one then be more lovable, I just last week had to have surgery my poor husband was expecting me to be out in just 2 to 2 1/2 hours and 6 hours later he could see me, He was scared something had went wrong, many of you know I am a believer but we can be certain that we will die at some point, are you right with those around you and your loved ones are you doing what you are meant to do, just another thought, please don't think I am preaching at you I don't have that right, but instead of being so dead set on dying why not focus on the fact that you have today, and you can still do some GOOOOOOD  FOR THIS WORLD AND THOSE IN IT, while you are still here. Appreciate what we have ppl. I know you are scared so are the rest of us, but you have to get to a point where you realize this is what you have and you can help others or you can bring everyone around you and yourself down. I was on a poor me just recently and my husband (whom I know loves me very very much) said why not you!!!!! Are you more important than so and so, or so and so, etc. and it made me think, yes I am important to my family and friends, and I hope to those I come in contact with, but I really am not MORE IMPORTANT than ANYBODY.  The facts are if we (I put me in this also) were to die, how long do you honestly think your life would count, its a sobering thought, if not to long then change it and get involved and make a difference. if you have little ones then get involved with their education, sports, team mom or dad, local hospital senior living place, go where ppl really don't have long to live and give them something to look forward to. I love you guys really I do, I went through this stage you are at, and I realized I can push everyone away with my negativity and outlook on live or I can draw close to them and enjoy every moment I have, I hope this don't sound like I am chewing you out but it helps with a different perspective.  Bless you all

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hey I understand your concerns but hey we are not guaranteed tomorrow guys, we could get in a car and get into an accident so does this mean we stay out of our cars and hide in our houses, oh wait our houses might catch fire so should we just shut down all together, I am sorry if I sound like I am upset I am not, its just life is precious, if you have a loved one around hug them if you are a loved one then be more lovable, I just last week had to have surgery my poor husband was expecting me to be out in just 2 to 2 1/2 hours and 6 hours later he could see me, He was scared something had went wrong, many of you know I am a believer but we can be certain that we will die at some point, are you right with those around you and your loved ones are you doing what you are meant to do, just another thought, please don't think I am preaching at you I don't have that right, but instead of being so dead set on dying why not focus on the fact that you have today, and you can still do some GOOOOOOD FOR THIS WORLD AND THOSE IN IT, while you are still here. Appreciate what we have ppl. I know you are scared so are the rest of us, but you have to get to a point where you realize this is what you have and you can help others or you can bring everyone around you and yourself down. I was on a poor me just recently and my husband (whom I know loves me very very much) said why not you!!!!! Are you more important than so and so, or so and so, etc. and it made me think, yes I am important to my family and friends, and I hope to those I come in contact with, but I really am not MORE IMPORTANT than ANYBODY. The facts are if we (I put me in this also) were to die, how long do you honestly think your life would count, its a sobering thought, if not to long then change it and get involved and make a difference. if you have little ones then get involved with their education, sports, team mom or dad, local hospital senior living place, go where ppl really don't have long to live and give them something to look forward to. I love you guys really I do, I went through this stage you are at, and I realized I can push everyone away with my negativity and outlook on live or I can draw close to them and enjoy every moment I have, I hope this don't sound like I am chewing you out but it helps with a different perspective. Bless you all

 

I agree. I still think half the Doctors out there are idiots but my PD had made me s better person. Yes there are things that bother me but I have had more good then bad come from this. I used to fear dying ( not to make u feel bad but I feared my house burning & drowning) but I really don't anymore. That is a blessing. Honestly my 14 year old would beg to do things that I wouldn't let. Not because they are bad just cause I was scared. They have a lot more freedom now. My husband and I are closer then ever. I started doing things he enjoys when I used to just go shopping. Growing up I became a cosmetologist and a few years ago I realized that I hate doing hair. I love working with special needs children. Its like I enjoy everything so much more now. I can honestly say I have never missed out on my kids sports, schooling ect.. my youngest son is an amazing tumbler.

 

I just want to say I agree and although things are different for me now its also more amazing!!!

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Here is my take on life expectancy: The length of your life may not be significantly changed by YOPD. On both sides of my family, the women all live to nearly or over 100. What changes is the quality of your life, for however long it lasts. That will be continually impacted by the progression of PD and how you respond to it. If you are proactive, grieve losses as they happen, exercise appropriately, eat the right foods, maintain as positive an attitude as you can, and gripe here when you can't, you will have a much better quality of life than if you sit, worry, give in, give up, and wait for PD to kill you. It's a personal choice we all reach at some point: Do I accept this and live to the fullest anyway, or do I stay stuck in denial, bargaining, anger, or depression and choose unhappiness with my PD. Those, by the way, are the stages of the grief process, which accompanies any loss, great or small, and the final stage is acceptance, which allows you to make new choices and move on.

 

It's your thoughts in your head. For however long people in your family generally live, you will probably live about that long. It's up to you, totally, which type of life you have. And, if you choose not to be proactive with PD, you are more likely to have complications and die from an unhealthy lifestyle, just like someone with heart disease or diabetes.

 

As the Martina McBride song says, "I hope you dance!"

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Thank you Sarah, that was a great message. Make the best of life all the way to the end.

 

 

Chelle, you also continue to say things that inspire me.

 

 

Diane, I really appreciate your message and it also gives great hope.

 

 

If anyone needs some inspiration, look up a gentleman by the name of jorge lacoste on YouTube. He has had pd for over 30 years and seems to have a great handle on it. Many of the videos are of him playing the guitar, or painting, but there are pd specific videos on there as well.

 

Chelle, that might be of particular interest to you as he was your age when diagnosed.

 

 

Cheers everyone!

 

 

James

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James,

I agree. My doctors were total dumbasses and refused to admit that i wasent crazy... but whats new when my gallbladder stopped functioning they refused to believe me till one dr did a hida scan. I went to the ER with pain in my upper left abdomen that spread to my lower right side then to my back. They checked for kidney stones and found that i had appendicitis. Then i went to the dr a month ago with pain in my lower right ovary area they sent me to get an abdomen ultrasound.. i get there and she was doing the ultrasound and i said wait what arr i doing my pain isnt there. She responded I'm checking for gallstones. .. I said well I won't find that I have no gallbladder. Doctors should be paying me for being smarter then them... anyways yeah I have a cist on my right ovary. I am far from crazy. But definitely expexct a million diagnosis and run arounds esp if u are seeing a reg Neurologist u really should see a MDS. Sorry for adding to ur post. Haha hope yall have a good night Well its night here anyway

Maybe not dumbasses so much, but arrogant and poor listeners.   It took 7 years from start of symptoms for my diagnosis. I had suggested Parkinson's early on.  I really know what it looks like, because my Dad has had it for 10 years +.  It really became clear as the disease progressed and I started developing the same problems he had.  

 

It started with poor concentration, insomnia, and unusual sleep behaviors (punching, kicking, yelling).   Then came the motor symptoms - constant cramping, constantly dropping objects and bumping into walls, limping, neck pain, etc.   No resting tremor early on, so the Doctors refused to believe it was Parkinson's. "Because everyone who has Parkinson's shakes."  Bullshit!  Then the tremor started - and they still insisted it was essential tremor and the rest was "in my head."  

 

A neurologist finally caught it when the resting tremor in my right hand was going full speed.  My current MDS is great and actually listens before speaking - alot of doctors could learn something from him

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Maybe not dumbasses so much, but arrogant and poor listeners. It took 7 years from start of symptoms for my diagnosis. I had suggested Parkinson's early on. I really know what it looks like, because my Dad has had it for 10 years +. It really became clear as the disease progressed and I started developing the same problems he had.

 

It started with poor concentration, insomnia, and unusual sleep behaviors (punching, kicking, yelling). Then came the motor symptoms - constant cramping, constantly dropping objects and bumping into walls, limping, neck pain, etc. No resting tremor early on, so the Doctors refused to believe it was Parkinson's. "Because everyone who has Parkinson's shakes." Bullshit! Then the tremor started - and they still insisted it was essential tremor and the rest was "in my head."

 

A neurologist finally caught it when the resting tremor in my right hand was going full speed. My current MDS is great and actually listens before speaking - alot of doctors could learn something from him

Ur right my MDS is amazing! I think the actual issue is not wanting to admit they might have been wrong. I mean obviously they are smart they go through enough schooling to know that but sometimes they should think outside the box. Haha I sound like a taco bell commercial.

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That is exactly what I'm worried about, chelle. My neurologist is very set in her ways. She won't even let me see a movement disorder specialist (in Canada we need a referral to see one). That's why I'm worried this is going to take forever.

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One thing I must say about this site is that it surprises me how good of a handle people have on the fact that they have pd. I am not yet diagnosed, but there are 2 reasons why I am exposing myself so much to this disease. Number one is that, for many reasons, it is by far he most likely cause of my problems and I am trying to inform myself as much as possible so that I can get a diagnosis. Number 2 is that I don't want to be devastated if and when I am diagnosed. I want to be as knowledgeable as possible and I want to already have a support network set up. I can't imagine how difficult it must be if you are not ready to hear this diagnosis and you know nothing about the disease prior to being diagnosed.

 

If and when I'm diagnosed, my response will be "I knew that months ago and you're the one making 300000 a year... explain that one to me"

 

 

Cheers everyone,

 

 

James

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Its officially been 9 months since my diagnosis. Months 1-4 I spent pretending it didnt matter to me. Months 5-8 being overly I'd say mad but down right pissed. And now month 9 knowing I have benefited in many ways from my PD and even though it takes certain abilities away from me I gain just as many.

 

James I was so blessed that my insurance didnt require a referral cause my neuro was also set in his ways. I looked up the best MDS in South Louisiana and made a list and called till I found one seeing new patients. Can u ask your Primary Care Doctor to refer you to a new neurologist? I know some probably think you are over stressing which you are but I did too I just didn't have anyone to talk to. I didn't know about this forum. My MDS told me about this forum. So its ok to over stress just know that as hard as it is not knowing its time u can spend on helping to see if things we recommend help your situation. What meds are you on?

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James,  I'm worried that in your mind you have already diagnosed yourself with PD.  What happens if your neurologist is unwilling to label you with the diagnosis?  Are you going to accept that it might be something else?  Like I said earlier, if you have PD, you can not hide from it.  It will get progressively worse over time (which can be  years).  I hope you don't have it. Doctors seem very reluctant to dole out this diagnosis and rightfully so.  I know it sucks waiting for someone to tell you whats wrong, but if the PD door is closed for the time being then your neurologist will be able to search for other causes.

 

I myself am very early in my journey having been diagnosed almost 6 months ago.  I use the Neupro patch and my symptoms are pretty much hidden away.  I still get a little tremor in my hand when I'm upset or excited.  The patch has come off a couple of times and I will say that the tremor in my hand is very noticeable now.  Personally speaking, I still have doubts that I have PD. Time will be the determining factor.

 

Dave

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I am not yet diagnosed, but there are 2 reasons why I am exposing myself so much to this disease. Number one is that, for many reasons, it is by far he most likely cause of my problems and I am trying to inform myself as much as possible so that I can get a diagnosis. Number 2 is that I don't want to be devastated if and when I am diagnosed.

James, from one of your other posts, here are what you listed as your symptoms: "postural tremor bodywide, internal tremor, fasciculations, depression, anxiety, constipation, increased dandruff, oily nose, weak right ankle and shoulder, stomach constantly churning, joint pain, muscle pain, insomnia, myoclonus and weight loss."

 

If you compare your symptom list to a list of the symptoms for PD, there is very little overlap. I think that's the reason that your doctor hasn't diagnosed you with PD and I disagree with you that PD is by far the most likely cause of your problems. In fact, as someone with both lyme disease and PD, I can tell you that you have at least as many symptoms of lyme disease as PD, and some of your symptoms are more consistent with lyme disease than PD. For example, joint pain is a common symptom of lyme disease and is caused by inflammation of the joints (lyme disease loves to attack the joints). Depression and anxiety are common among lyme patients (and probably almost all patients with serious diseases) . "Weak" right ankle and shoulder are also common symptoms of lyme disease. Stomach problems - yep! Myoclonus - often caused by low magnesium associated with lyme disease.

 

I'm definitely not saying that you have lyme disease or anything else in particular. I'm just saying that your symptoms could be a lot of things and PD may not be the most likely cause. You don't want to talk the doctor into diagnosing you with something you don't have. Being misdiagnosed is worse that not being diagnosed. Your symptoms may just not be specific enough at this time for a diagnosis. I just wish the doctors would say "I don't know" when they don't know, instead of blaming the patient.

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Hey Dave,

 

 

Thanks for the response. I have been tested for Lyme and every other disease under the sun. I have had an Mri to rule out ms, aneurysms, tumors, etc.

 

 

I only became convinced this was pd when the doctor found rigidity in both of my arms. I also very frequently get dizzy when I stand up, which I understand is also a symptom of pd.

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And I agree. Telling me that this is all in my head, when I have no history of any sort of anxiety, depression, or anything else is just a way to get rid of me until more symptoms pop up. The day when biomarker tests for pd become a reality will save many young people the additional stress of going years without a diagnosis while at the same time being convinced they are crazy.

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Getting a reasonably accurate diagnosis is as simple as taking a tablet or three of Carbi-dopa/Levo-dopa (Sinemet) and seeing whether symptoms lessen or disappear.  Why so many refuse to take the test under the auspices of a neurologist continues to baffle me.       R.   

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