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#54809 What I Hate About PD

Posted by DANCER on 10 February 2013 - 08:24 PM

I hate being embarrassed in public because I have trouble with things like paying at the store for items. I feel so slow and wish people knew why - instead I feel like I am holding up the line...very frustrating. Takes me forever to do such small things.


#54808 What I Hate About PD

Posted by christie on 10 February 2013 - 08:02 PM

What i hate most about PD...
-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".


#63259 IT COULD BE WORSE

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.

ALS

Alzheimer's

Huntington's

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)...................................................................

 

 

Annikin,

 

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.

 

boys-in-hospital-bed-300x225.jpg

 

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

 

Richard




#54655 YOPD Facts

Posted by Tmj on 03 February 2013 - 11:12 AM

I grew up watching The Sound of Music - my parents must have made us watch it at least 20 times. So for those of us that know the tune, here is my rendition of the song 'favorite things'.

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


#58116 Forum Terms and Rules

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#58449 What I Hate About PD

Posted by SweetCndnMaple on 01 July 2013 - 02:16 AM

thank you for creating this post. I never get to talk about what I HATE about PD. I keep the brave face on. Everyone around me wants to talk about adjusting, accepting, accommodating, keeping positive, etc. Which is fine, except its not the whole picture, you know? So is it ok if I tell you?

- 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.


#58727 In Memory of my Dad

Posted by dgray001 on 09 July 2013 - 11:48 AM

July 13th is fast approaching and I realize to many, its just another day. But it is a very significant day for me, its the anniversary of my father's death. He passed away in 2004, at the age of 79, after a long battle with PD. PD didn't kill him, but he suffered with it for many years and in the end, it was a massive stroke that took his life. His health had declined, dementia was rearing its ugly head at times, and we knew Dad was not well. However, nobody expected the stroke or that he could leave us so quickly. Mom found him unresponsive in his favorite recliner and called for an ambulance. Our small town hospital could do nothing for him, his vitals were good, but he appeared to have no brain activity. We transferred him to Lexington and they also said, I'm sorry there is nothing we can do but make him comfortable. My mom and I had to leave for a bit to take care of a few things and my brother stayed by his side. We barely made it home and we got a call saying his vitals were dropping and we should return asap. I think my car developed wings because I made the trip very quickly and we practically run down the hospital cooridors. We got to his room and the nurse said he had waited on us to get there. He passed within a few minutes with all of us by his side. I will never forget watching him take his last breaths.

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.


#54822 What I Hate About PD

Posted by RNwithPD on 11 February 2013 - 12:44 AM

That's too funny, jb!

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.

Kevin


#54127 The Picture Post

Posted by Brad24 on 06 January 2013 - 01:26 AM

Meeting little brother for first time

Posted Image


#957 To our 'First-timers': WELCOME

Posted by MamaGull on 16 March 2007 - 12:20 PM

I always feel sad when it comes to welcoming someone to this forum, because it means that person has a loved one who has PD. You - collectively - have had your lives turned upside down, and we understand the cries of "WHY?" and "How will I deal with this?" and especially "What happened to the future???"

My husband, now 65, was diagnosed just after his 63rd birthday, and we realize now that he had been exhibiting symptoms for at least 2 yrs before that. I guess, in a way, we were lucky, because at the time of his diagnosis, my husband had just been offered a job transfer back to the Seattle area from Kansas. So we didn't have too much time to concentrate on the news; we were wrapped up in all the preparations for the move. We bought a few books about PD, found the various websites, but were not really able to absorb it all. He made the move to Washington while I stayed in Kansas to finish prepping the house to be put on the market. I found this forum in Feb. '06 and started firing questions left and right. After a bit I calmed down a little and was able to absorb all that I'd learned.

The men and women here are saints - no matter what they deal with at home, they are always ready to answer questions, offer advice/insight/experience, and most of all, to hug and support you. This group is mainly women, but there are also a number of men caring for their wives, and our guiding light is Jim K, who has Parkinson's. He shares his own experiences, gives us the opportunity to see through the window, as it were, and see how it feels inside, and his greatest gift is that he encourages us all. A rare and unique gentleman and our dear friend.

PD is a tough foe that doesn't fight fair; there is no timetable that helps you understand just where you are relative to the overall scheme of things. No two people with PD will deal with the same symptoms, much less in the same order, nor will their meds 'cocktail' be the same as the next person. This is why it is very frequently referred to as a 'designer disease'. One size does NOT fit all.

Ask any question that comes to mind - there is no such thing as a taboo subject. No matter what your problem, someone here has already dealt with the same thing, or something very very similar. We are our own community.

Before I close out, I thought it would be wise to share some of our shortcuts (you know, the secret handshake?!!?). We use some 'shorthand' - definitions follow. If I forget anything, I know that members of the forum will fill in the blanks...

PD - Parkinson's Disease

PWP - Person With Parkinson's (also known as "Parkie")

CG - Caregiver

DH - Dear Husband ... DW - Dear Wife

MIL/FIL/DIL/SIL - Mother/Father/Daughter/Son-in-Law etc...

MDS – Motion Disorder Specialist (a Neurologist who has done
additional work and specializes in illnesses of this sort).

DBS – Deep Brain Stimulation – a surgery in which electrodes are implanted in the brain to reduce the symptoms of PD. We have more than a few here whose PWP’s have had this procedure done, and can advise, share wisdom and experience. For additional information on this, check out the “Ask the Dr” or the "Ask the Surgeon" forums, as there are numerous threads on this subject.

Each of us here is in a different place on the PD roadway - many have PWP's that are still in early stage, others are in all of the various later stages, and a few have lost their PWP's but remain here to help. Member's backgrounds are very diverse, but there are more than a few who have medical backgrounds and are particularly helpful. We are spread all over the globe, with members in a number of countries beyond the North American shores. PD inevitably infiltrates our entire life, so in addition to specific PD issues, we share what is going on in our lives. In this forum you will find many others who know how hard it is to be a caregiver, and understand. You will quickly find that you are not alone, and that there are people out there that can not only relate, but help! Finally, we share some humor as well, for 'phunnies' are great medicine, and as often as not, the only thing we will find to laugh about in any given day.

Welcome to the warmest and most nurturing support group you could ever hope to find.

Hugs, Sharon


#73597 POSITIVE FEELINGS TO SHARE!

Posted by Drummergirl on 11 August 2014 - 11:55 AM

Hi Friends,
I thought I would share my story in hopes it will provide some good news and hope to YOPD, Caregivers and anyone who is interested.
I must warn you, it's long.....

I saw a new MDS as my previous was too busy...... I live 10 minutes from Dartmouth Hitchcock Hosp. in Hanover NH. She moved here from the Cleveland PD Clinic.

Wow! very easy to talk to.... she is a DO with mds specialty.

Right away I could tell she had more PD experience then my other mds.

We went over my history, meds etc. She was shocked I was dx almost twenty years ago, (I'm almost 54, MJ Fox and I were dx around the same time) she was surprised I had been on l/ dopa this long.
We discussed my dosages and how much time between doses.

Which is 25/100, sinemet 1/2 pill every 2 1/2 hours.
Azilect 0.5 mg 1x a day am
Clonazepam .05 at bedtime
Comtan 200 mg 3x a day. the only side effect from this is dark urine.

We talked about levodopa and protein, the usual dietary issues with PD.
I am a grazer, eat throughout the day, taking in a little protein at each graze. I do eat a little more when I sit down with family, but still do not eat a big meal.
I exercise, mostly strength training. I shared my concern of inability to gain weight or muscle. She said most pwp continue to lose weight. Encouraged me to keep exercising just the same.

I shared with her I also was on eldepryl for the first 7 years, ( it was new at the time and was thought to slow the progression) She commented it looks as though it worked...why did you stop? Because my former nuero thought its benefit would have been met and saw no reason to continue.
I also shared my only symptom to that point, first 7 years, had been right foot tremor.
When I was abruptly removed from the Elderpryl leg tremors began on both sides, but I still responded to a slight increase of l/ dopa.

She did a neuro exam and she said your doing so so well, no rigidity present, finger & hand movement is good. Surprised here, since I drop things in the am.
She said I should be very thankful for such slow progression......
" You could be the poster child for Pd" " This is what we want for all pwp." And best of all, she thinks my progression will remain minimal!! keeping my fingers crossed here....

I TRULY AM THANKFUL AND WISH IT WAS THIS WAY FOR ALL!

She asked if I fall, I have not. Balance is an issue when I have dyskinesia.
Passed the smell test 6 months ago.
My writing is more in line with dystonia, writers cramp, I do not write real small, like pwp for whatever thats worth.

She then looked at my recent MRI and concurred with former mds, nothing abnormal, " it was a brain of a teenager"..... Hmm, not sure thats so good.lol!
No abnormalities and I have Pd???

She was unable to retreive my da t scan to view herself. It was read by former mds as abnormal with decreased uptake of dopamine. I will have former mds send it to her to view.

We did not change any meds. I have been concerned about the clonazepam I take at night, becoming addicted, it is suppose to help with leg tremors, lasting longer then lorazepam. She clearly said the dose was too small for addiction and no need for concern.

We did discuss the dystonia that I think I am experiencing in my calfs. We ordered a nerve conduction to rule out pinched nerve or nerves. If it is dystonia, then she will prescribe baclafon.

Sleeping is an issue for me, I can get to sleep, but I can't stay asleep more than 4 hours, I will try adding 6mg of melatonin.
When she walked out with me, she said my walking was really good and I should be very happy with where I am.
Again, not tooting my horn but it was nice to hear this from someone who has been around hundreds of PD patients.

I do have some of the annoying pd symptoms, like fluctuating temp, days when meds are up and down. Fatigue, sometimes I have brain fog and anxiety about meds wearing off.

I AM NOT TOOTING MY HORN HERE, just want to share some good news and that having PD does not mean a CRAP FEST life for all. I wish everyone had a mild form with slow progression as I have had...

Cheers!

Karen


#63103 OM GOSH YOU GUYS !

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 :o

 

Tears of joy !!! Just wanted to let you all know. Never give up hope ! ( I know this may not last but it might right !)

 

Hugs,

Rebecca




#56426 Facts on PD treatment

Posted by christie on 05 April 2013 - 06:28 AM

Facts on drug treatment for Parkinson's disease
(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"
http://www.ncbi.nlm....pubmed/18695156


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.


#54816 What I Hate About PD

Posted by jb49 on 10 February 2013 - 09:03 PM

Oh my, I don't hate anything about PD. Suffering it has made me a bigger and stronger person. I am glad to suffer it because,,,,what a line of crap I was spinning out .. ha, did I fool anyone? Seriously, good thread start Luther, I hate the shakes and bradykinesia for one, no thats two.. I need my hand back. I try to do things and it is like my hand is cold frozen. Like a dead fish, Like I have mittens on a frozen hand that isn't a hand anymore, it is a frozen fish paw in a bulky mitten. I am right handed and now ol Lefty is learning to do many new things. When mr son of a bitch PD bites Lefty as will happen one day, I will be pretty mad. What will I do then?

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.


#52688 PD and the uses of humor

Posted by jb49 on 07 November 2012 - 08:43 AM

A wise old man was asked, "At your ripe age, what would you prefer to get – Parkinson’s or Alzheimer’s?"

The wise one answered, "Definitely Parkinson’s. Better to spill half an ounce of Rum, than to forget where you keep the bottle!"


#73797 I'm Tired! Where's the Humanity in Healthcare?

Posted by KimAgain on 13 August 2014 - 09:39 PM

Oh, Kevin, Kevin, Kevin!

I read your post to my husband and he sat there, with each line I read, his grin getting bigger and bigger.  Finally, when I'd finished reading and asked, "who does that sound like?!" he said, "that's you!" and, frankly, it could easily have been me--for a multitude of reasons.  For starters--the fatigue.  I told three doctors for over a year, like a broken record, "I'm soul-deep tired," "I'm exhausted--exhausted I tell you--help me!" "I am just so tired, what can be done about this fatigue?"  But, all I'd ever get was, "you have Parkinson's Disease."  As if that said it all--that I have a disease that makes one tired and so, I should just get used to it.  Grrrrrr!  

 

I finally got so tired of it, I sat down with two of my doctors and made it very, very clear to them that the bone crushing fatigue was negatively impacting the quality of my life and it was about time they listened to me--and, they did.  My MDS thought for a moment and then said, "Parkinson's patients are often vitamin D deficient, we'll start there."  My internal med doctor got the same lecture from me and, as a result, I had a full blood workup.  

 

Turns out, I am anemic.  AND, my vitamin D levels--which my doctor tells me, as I recall, they, "like to see in a range somewhere between 50 and 100," were at 19.  So, they've started off by giving me 50,000 IU's of vitamin D once a week for six weeks and a daily prescription iron pill.  A month in, my fatigue levels are probably 40% - 50% improved.  Great news, right?  Yes.  But, I suffered needlessly for at least a year longer than necessary because my doctors were brushing my symptom aside as just part and parcel of the PD thing that everyone knows there is no treatment for.

 

Before Parkinson's, I was an artist.  These days, I'm lucky to sign my name with finesse or without causing painful cramping in my hand.  What have each of my doctors-all three at different times--told me when I told them about this and wrote my name on a piece of paper to demonstrate the problem?  How's this for the arrogance of medical professionals, "You write better than most doctors I know!"  As if that, somehow, made it OK that I can no longer paint or draw.  The last time that sentence came out of a doctor's mouth, I grabbed a pen while he was out of the room giving my DBS adjustment time to make its presence felt--and, I wrote and drew cartoons all over the paper on his gurney--giving him the clear message that the loss of my art was more devastating to me than dystonia ever dreamed of being and I wanted him to work on improving it, even if an outright fix was not possible.  He did.  I'm nowhere near back to what I was, but I'm nowhere near as bad as I had become either.

 

Then, there was the battle over my sense of smell.  I told my doctor that my sense of smell had not only all but gone, but it had also gone haywire.  In short, I often misidentified things when I could smell them at all.  The response I got was that, basically, he--my doctor--had never heard of that symptom in Parkinson's before--and, frankly, he left me feeling like a hypochondriac at worst or, at best, a needless whiner.   I came home and threw the question into this Forum and, in no time at all, I had pages of responses from people who had experienced the same exact thing.  I printed them out and took them to my next doctor visit.  I informed my doctor that if he hadn't heard of it, PD patients clearly had and, if he would read through the responses I gave him, perhaps he could learn something new about the disease he is treating.

 

So...

 

There you have it--a rant from me, just like I think you felt the need to unload from your own shoulders.  Sometimes I feel like writing a book especially for doctors on what it feels like to actually have PD, listing all the frustrations and losses--big and small--starting with the apparent deaf ears that many a doctor has to anything they lack the experience, time, patience, or energy to address. But, then I think, what's the use?  Humans are humans with or without a white coat, so I guess I'll just have to keep advocating for myself and being as pushy and assertive as it takes to make myself heard.  THEN, I'll unload my frustrations in the YOPD Forum!

 

I believe I understand what you mean about feeling like a "Debbie Downer."  Sometimes I feel I will explode if one more person demonstrates what a "good attitude" they have and how important it is to "look on the bright side."  I get that, truly I do.  But, sometimes, I think it's just as healthy to vent frustration, loss, or anger as it is to smile and fake, or actually have, a good attitude!

 

So, here's the thing:  I promise, I, for one, will always listen and will try my best not to judge.  I'm human and subject to mistakes, but I'll do my best to be a soft place for you to land. 

 

Regards,

Kim




#67441 Overwhelmed

Posted by RNwithPD on 25 March 2014 - 01:21 PM

jds6958,

 

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.

 

Kevin

 

Factor, S. A., & Weiner, W. J. (Eds.). (2008). Parkinson’s Disease: Diagnosis and Clinical Management (2nd ed.). New York: Demos Medical Publishing.

 

https://www.merck.co.../sinemet_pi.pdf




#65609 What I Hate About PD

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.

 

Dianne




#64712 Obamacare? Anyone signing up?

Posted by Twitch on 07 January 2014 - 12:25 PM

I'm done on this topic. I didn't come to this forum to get into political discussions. I will end my post by saying I hope we all get the medical attention we need and deserve as AMERICANS and are able to afford the medication needed to deal with PD. I have no problem helping out someone that's deserving who needs assistance how ever they are subsidized.


#62535 Comedian Rick Shapiro

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.