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Posted by DANCER on 10 February 2013 - 08:24 PM
Posted by christie on 10 February 2013 - 08:02 PM
-the unrelentless progression of symptoms. the thought that no matter what i do i will get worse with time.
-my fear of dementia
-my fear i won't be able to take care of my child-if i ever have one
-my anger for people-families not necessarily excluded- who don't care to understand the severity of young onset parkinson's and its effect on our lives.
-taking more meds than any human body can/should tolerate. having to take meds for side effects caused by other meds and not by the disease itself.
-having to choose-eventually- between immobility and dyskinesia. great options...
-the obligation to feel thankful for all the above because i "won't die of PD".
Posted by metfan31 on 23 November 2013 - 10:38 AM
Those were the exact words my PD specialist consoled me with when after diagnosing me I held my breath for 5 minutes then broke down and cried. I wanted to scream- "yeah, well it could be better!". The I remembered it wasn't her fault and I started thinking off all the things that were worse- hence my new topic. Strangely it makes me remember " attitude and gratitude". So feel free to add to the list. Puts things into perspective don't you think ( adn no I still think having PD sucks)
My list starts with cancer- it has taken half my family and one very dear friend.
Being in the WTC on 911
Flesh eating bacteria
Losing a child
Watching someone else you love go through any of the above
( I am only getting started)...................................................................
The truth is it could always be worse, and I appreciate your perspective.
In 2008 my wife was pregnant with our 3rd child, during a routine ultra-sound they thought they saw extra fluid on the brain. They then ordered a level 2 ultra-sound, about 5 mins in the tech said they did not see any fluid on the brain. I was said "great lets go," but they had to complete all the measurements. Another five mins in the tech stopped talking or making eye contact. When she left the room she told us to hang on while she had the Doctor review the ultrasound. That was the day my little angel was diagnosed with Hypo-plastic Left Heart Syndrome (HLHS). He was born in late Sept that year and immediately put into a medically induced coma. Within a week he had his first open heart surgery, and then spent the first six months of his life in the hospital. With two older kids at home my wife and I had to split time between the hospital 2 hrs away and home until the the Ronald McDonald House opened in mid Dec. We got him home in March of 2009 and he stay out of the hospital for over a year (except a week visit to have a G-tube inserted). The Summer of 2010 was the happiest my family had been ever, our angel was doing well and we were all home. That was when his cardiologist told us it was time to consider the third (and hopefully final) open heart surgery required to manage his condition. Leading up to the surgery he was the happiest baby people knew and had a great 2nd birthday party (which double as a fund raiser for the upcoming surgery).
In Oct 2010 he came out of the OR extubated (no breathing tube needed) and looking good except a little groggy. With encouragement from the staff we left to get some food (hadn't eaten or left all day). We were away maybe an hour before we got a phone call that things were not going well and we should head back. That night he was put on ECMO (heart lung machine) and put in a coma. A little over a month later after a few tries to get off ECMO and more surgeries he could not fight any longer and passed away in my wife's and my arms. I think back on that night when the world seems unfair and remind myself that yeah it is, and it can only be worse. If not for my other two kids at home I don't think I would have ever gotten out of bed again, but they needed to be feed and cared for. In Dec 2011 my wife gave birth to our 4th child a perfectly healthy baby boy. Whenever I look at him I see his brother and that makes me smile. All through my Dx struggles this past year I had to go to Doctors offices and hospitals by myself but I always knew I was not alone. As hard as dealing with PD is, losing a child was worse, but having both happen, somehow makes me stronger. If any of that makes sense...
Life can hit you hard sometimes especially when you fool yourself into believing things are going good and the worst is over. I don't like telling this story to people how don't know me, because losing a child is like being Dxd with a horrible disease, people don't treat you the same when they know you are broken. The truth is I'm still a person and still have the same dreams and challenges everyone else does. Losing a child did not make me immune from getting something like PD but it did teach me how to handle it. Head on, and openly.
Little James 9/29/2008 - 11/30/2010
sorry if my share ruined anyone's day here, I just can't help thinking about my angel this time of year. If you would like to read more details about his story there is a website: http://littlejameshealthcarefund.com/ please do NOT try to donate, his medical bills have been paid, we keep the page open to keep his story out there.
For love of my son
Posted by Tmj on 03 February 2013 - 11:12 AM
SIGNS OF PD
Issues with memory and slowness of recall
Losses of balance and fears that I might fall
Problems with neurons that cause me to freeze
These are a few of the signs of PD
Neuro appointments and meds by the truckload
Shaking called tremor and voices of low tone
Cramping and stiffness that causes distress
These are the things we have more or less
Issues with sleeping and expressions of face
Dealing with drooling and slowness of pace
Confusion, depression, anxiety and stress
These are some things upon us that press
When fatigue strikes
When the leg drags
When I’m feeling bad
I simply remember that I have PD,
And that there are worse things to have
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Posted by SweetCndnMaple on 01 July 2013 - 02:16 AM
- I hate that I cant write, cant take notes, cant read my own grocery list
- I hate that I cant lay still when I go to bed, and my legs ache
- I hate that I cant get down on the floor to play lego with my nephew
- I hate that my niece told her Mom - "I don't like when Aunty's hands shake, I'm scared"
- I hate that I had to give up all my high heels, which were kind of a signature
- I hate that my adult daughter, who is just beginning her own life, career,etc is quietly adjusting her plans to include caring for me in the future
- I hate that my employer keeps asking what they can do to accommodate me, and I don't know what to tell them, because nothing helps, and I can tell the end of work is coming
- I hate that if I have to stop working, my LTD benefit isn't enough to cover my expenses, and I am too young to collect my pension
- I hate that I do not have a partner, someone to be by my side through this, and that never really bothered me before
- I hate that I am scared and sometimes I cry in front of people, who think I am strong
- I hate, hate, hate, hate, hate, hate not knowing how fast PD will progress, and what will happen to me in the future
Oh wow, thank you, that felt pretty good! I will now return to my regular programmming.
Posted by dgray001 on 09 July 2013 - 11:48 AM
He was a preacher and never lost his faith in God, even when he was at his weakest moments. I was the typical preacher's bratty kid and I rebelled against Dad and his strict rules. I lost my way for a bit, but Dad never stopped loving me or being there for me. I was well into my 30's before I really began to appreciate the morals and values my dad had taught me. He was a wonderful man, friend to everyone, always a smile and kind word. To know him was to love him and he made the world a better place just by being in it. I'd give anything to have a few more days to spend with Dad, to tell him I'm sorry for being a brat, that I love him, and I'm a better person because he was my Dad.
Oh and Dad.....of all the things you had to leave me, did you really have to leave me with this PD thing? I mean really? I wasn't that bad....LOL Just kidding, it was your "thing" and now its mine, and I'm OK with that. Rest in peace my dear sweet Dad, till we meet again.
So if you're lucky enough to still have your parents, hug them, love them because tomorrow is not promised.
Posted by RNwithPD on 11 February 2013 - 12:44 AM
Right now, the biggest thing that I hate about PD is feeling dumb or stupid. I have always prided myself on being at the top of my class or being the best at what I do, but now I struggle just to keep up. The information is still there, it just takes longer to pull it up and to remember the names of people, drugs, diseases, etc. Other people (mostly other nurses) now get the impression that I "don't know my stuff" and are starting to treat me like an idiot. It's difficult to swallow my pride and just be thankful that I can probably keep working for another couple of years.
Posted by Rebecca2z on 20 November 2013 - 01:49 PM
I can't believe it my father is playing cribbage RIGHT NOW with my mother, he is counting no problem. In fact mother is having a harder time then him with the counting ! My sister sent me pic she took of them playing, I can't stop looking at it ! They upped his meds yesterday and today he picked up a deck of cards and asked my mother if she wanted to play cards !
How can this be !!
He has been sitting for almost 3 weeks staring, no TV, no nothing and now playing cards
Tears of joy !!! Just wanted to let you all know. Never give up hope ! ( I know this may not last but it might right !)
Posted by christie on 05 April 2013 - 06:28 AM
(topic open for debate-discussion)
Fact number 1: Patients with young onset disease are prone to developing early and severe dyskinesias and motor fluctuations induced by chronic treatment with levodopa.
Fact number 2: Levodopa remains the most effective and better tolerated drug for Parkinson's treatment. It's the only drug with proved efficacy in prolonging our life expectancy and significantly improving our quality of life (QOL)
Fact number 3: Many neurologists are hesitant to prescribe levodopa-especially early in the disease and to patients with YOPD- or try keeping the dose of levodopa as low as possible for as long as possible in order to avoid the emergence of dyskinesias and motor fluctuations.
Fact number 4: Dopamine agonists represent the most effective alternative to levodopa, either as monotherapy in early disease, or as an adjunct to levodopa allowing for administration of lower overall doses of levodopa
Fact number 5: Monotherapy with dopamine agonists seems to be the preferred initial treatment for patients under 60 years of age. The main reason for this is "levodopa phobia".
Fact number 6: Dopamine agonists, especially when given at high doses, may cause severe side effects, including not only the temporary symptoms of nausea, vomiting and postural hypotension but, most importantly, behavioral disorders (impulse control disorders, hallucinations...)
Fact number 7: Patients started on dopamine agonists (instead of levodopa) have a significantly lower incidence of MILD TO MODERATE NON DISABLING motor complications (as compared to patients started on levodopa). However, the duration of this benefit is only temporary, and does not seem to exceed the first 5 years of treatment. There appears to be no significant long-term advantage to starting treatment with a dopamine agonist as regards the development of SEVERE AND DISABLING dyskinesias
Fact number 8: Parkinson's is a chronic degenerative incurable disease. The initial choice of treatment-levodopa or dopamine agonists-has little-if any-effect on long-term prognosis. As Weiner and Reich commented on this: "Agonist or levodopa for Parkinson's disease? Ultimately it doesn't matter, neither is good enough"
Patients with PD should be active partners in disease management. Fully informed in order to make informed decisions and critical choices, depending on their particular needs.There's no "one-size-fits-all" treatment.
Let's keep updating this topic with evidence-based data on PD treatment, to help us all make the right decisions on our treatment.
Posted by jb49 on 10 February 2013 - 09:03 PM
Dancer. I hate digging out change to pay for stuff and so I end up accumulating coins. Every so often though I bag them up when I go shopping. I pull out the bag, put it on the counter, explain that I have Parkinsons and it would take me forever to do it with my Parky Paw and ask the clerk to count out what she needs. We have 2 and 1 dollar coins here in Canada (as well as our colourful pretty paper money which is now printed on a polymer) so I often pay for purchases up to 15 or even 20 dollars with my baggy of coins. Clerks generally don't mind, saves them going to the bank for change. Sometimes I have to turn to glare at the guy mumbling behind me. I explain that Parkinsons makes my once nimble fingers slow but at least PD doesn't list rudeness as a symptom.
Posted by jb49 on 07 November 2012 - 08:43 AM
The wise one answered, "Definitely Parkinson’s. Better to spill half an ounce of Rum, than to forget where you keep the bottle!"
Posted by RNwithPD on 25 March 2014 - 01:21 PM
I will throw my two cents worth in as well. After I was diagnosed, I spent a lot of time (and still do) researching the disease. At first it seemed real promising, but the more I studied the more I came to realize how little we really know. The general public, however, believes that we have made all of these miraculous breakthroughs in recent years. So much so that, to them, PD is not that serious any more. This couldn't be farther from the truth, and the public needs to be educated on this. From a scientific standpoint, what do we know about Parkinson's? Not much. The experts wil disagree and say that we know a lot, primarily because they have spent a lot of years and a lot of money studying the disease and don't want to admit that we haven't gotten very far.
- What causes PD? We don't know (lots of theories, but no solid evidence).
- When does PD begin? We don't know. (This is a MAJOR problem because if we don't know when it actually begins, we can't determine a cause or a trigger.)
- How will the disease affect me? Only time will tell. It's a designer disease with no two people being exactly alike.
- How quickly will it progress? Only time will tell. There are some general indicators of those who will progress more quickly than others, but no one can predict it with any certainty.
- What is the best course of treatment? That depends on the individual and is based on your symptoms and how they affect your daily life, as well as the opinion of your MDS. (This is one area that they have improved over the years, with doctors learning through experience how to mix and match drugs and titrate their levels.)
- I hear that they have developed a lot of new drugs. True...but the most effective drug that is the gold standard by which all others are judged is levadopa, which was discovered in the 1930's and its efficacy in PD first noted in the 1960's. The new drugs try to "trick" the brain into thinking there is more dopamine available than what actually exists. Levadopa is the only one that actually creates dopamine.
- What about surgical treatments? Deep Brain Stimulation surgery can be highly effective and buy you several more good years. However, the disease will continue to progress and eventually the DBS will no longer hide the symptoms due to the wide-spread neuronal damage. (Lewey Bodies are found in cells beyond the substania nigra, which is why we have symptoms such as a loss of smell.)
This brings us to the main question of your post. PD affects more than just the substantia nigra (SN). In fact, studies suggest that the damage begins in other areas of the brain and then works its way to the SN (Factor & Weiner, 2008, p. 218). This accounts for autonomic dysfunction, olfactory dysfunction (smell), sleep disorders, and depression that often precede the onset of motor symptoms by years. As with all things related to PD, the reason for Sinemet's inability to control symptoms in the late stages in the disease is not fully understood. However, it is generally thought to be a result of the diminishing pool of nigrostriatal neurons which store and convert levodopa to dopamine (Factor & Weiner, 2008, p. 474). Levodopa is a precursor to dopamine, and must be converted by extracerebral tissues into dopamine. Once converted, the nigrostriatal neurons act like "batteries" and store the dopamine for use. As the "batteries" die off there is less storage capacity for dopamine and, consequently, levodopa becomes less effective. Of course, this is all just a theory as we don't even fully understand how levodopa works (Merck, 2014). Which is the frustration with researching the disease as you come to realize that we don't even understand how a drug developed nearly 60 years ago actually works!
In the end, my advice is to educate yourself the best you can, but don't let it consume you. Focus more on just trying to take care of yourself through healthy eating and exercise. I wouldn't be afraid to take Sinemet if you feel that it is necessary to maintain your quality of life at this time, but it also doesn't hurt to try the dopamine agonists if you can tolerate the side-effects.
I hope this answered your questions.
Factor, S. A., & Weiner, W. J. (Eds.). (2008). Parkinson’s Disease: Diagnosis and Clinical Management (2nd ed.). New York: Demos Medical Publishing.
Posted by Beau's Mom on 29 January 2014 - 01:10 PM
(((((((((((((Sister411)))))))))))))). Having YOPD is like being constantly in the grief process over one loss or another. I feel sad when I compare myself to others, and especially when I compare my insides to their outward appearance. No human being is exempt from suffering, and that woman who can easily get up from a chair and walk away may have cancer, or a son who is an addict and never calls. We can't see what thoughts torture their minds. If you are curious about what your husband thinks about you in comparison to other women, ask him. I was under the impression for many years that I could read people's minds, and I was almost always wrong about what they were thinking.
I can get a glimpse of the wonderful woman you are just by reading your quote. You are "clothed in strength and dignity" and you "laugh without fear of the future." I needed to read that today. Thank you for that reminder that I need not be afraid.
Posted by Twitch on 07 January 2014 - 12:25 PM
Posted by Donald Ennis on 07 November 2013 - 02:05 PM
OK I'm confused, if Micheal J Fox makes a joke about PD and it's symptoms we are OK with that, he can even make a whole comedy show about it and we still praise him for bringing attention to this disease. But Rick Shapiro, who also has PD makes a joke about PD and it's symptoms and he's an insensitive jerk?
I for one don't like the language but that's just me, I'm not offended by the statement or the intent. When I was Diagnosed in April of this year, my father, who has had PD for longer than anyone I know, told me to keep a sense of humor, make it light and you will live and deal with PD much longer then others. I haven't always followed my Dad's advise in my life, but this time I plan to listen.
Tracy I wish you and Rick well.
Posted by christie on 27 August 2013 - 04:29 AM
I am a pathologist. But nobody (doctor or not, neurologist or not)can diagnose anything over the internet. We can all try make helpful suggestions, exchange information, share our fears and thoughts. but nothing more. Invisable, I hope you don't have PD. As a patient I don't think you have it. But only your doctors can rule out PD. Or any other disease.
I also know, I understand that right now the only thing you want is a diagnosis. We've all been there. Not knowing what you have can be agonizing. But what I do know now, as a patient with PD and not as a doctor, is that the diagnosis of PD is no ticket to bliss. "Now I can sit back and relax cause I know I have PD". No, definitely not.
Three years ago I didn't know what I had. I had done every test known to man and still no diagnosis. If everything was normal why was I feeling like my body was failing me? At the neurologist's office I felt like a crazy person. I could almost hear the inevitable "it's-all-in-your-head-diagnosis in my head. And I hated it. I almost wanted to blurt out "Please don't tell me i'm crazy". And then something crazy did happen. But it wasn't me. It was my neurologist telling me I had an old people disease. Parkinson's? Seriously? Like a puzzle coming into place, my medical mystery was solved. Everything made sense. At last. Have to admit I was relieved. But if you asked me NOW, three years later? NOW that PD is stealing my life from me, day by day? If I could go back to that neurologist's office what would I wish NOW? What would I blurt out to my doctor? "Please tell me it's all in my head. Please don't tell me I have PD. Please tell me I can still have a normal life". I would take not knowing over PD any time. IF that meant I could have my old self back.
In some cases of patients with non-specific neurological signs and symptoms no definite diagnosis is ever made despite meticulous investigations. Some symptoms disappear or never evolve further for no apparent reason. And that's surely NOT the worst thing that can happen to you.
Posted by zackabenie on 04 August 2013 - 12:48 AM
Posted by sessie on 03 July 2013 - 08:47 AM
I hate that there's nothing I can do to help him when he has a bad day.
I hate that sometimes I feel like he's trapped in his own body and he can't get out.
I hate not knowing how every day is going to be--having a series of great days and then getting ambushed by a random awful day.
I hate when we're out in public and people look at him with scorn because they think he's a junkie or something.
I hate the days when he can't do his favorite things.
I hate the uncertainty of the future.
I love him, though. I love him lots.