Tell it like it is - Need your input!
 

Hi
I am sorry that I don't get here often. I do read more than I post, however. I read about some of you in the latest issue of Neurology Now (March-April, 2007 - page 42-43). Good article!


I frequently am asked to speak to different groups about what it’s like to live with Parkinson’s. This includes what it’s like for caregivers, also. Years ago, when I first started this type of advocacy, I collected thoughts from people with Parkinson’s and their families. I need to update my comments.

Could you send your comments here? Just put reply here. By posting your comments, you are giving me permission to use your comments for my presentations. Also, give me how you want to identify yourself in the presentation. For example, your initials or first name and what area you are from. For example, sign JBP in Wyoming, etc. Here is the requested format:


What it’s like to live with Parkinson’s: (Only 1-2 sentences)
Example: It’s like being in a runaway car; you know there’s a cliff up ahead, but you can’t stop it.

From: JPP in Wyoming



Please let me know this within the next week (no later than April 27)– I promise to report back how everything goes. THANKS SO MUCH! Hope to see some of you at the Unity Walk in New York City April 28!

Peggy :)

1 or 2 sentences eh?
 

OK, I'll try:)

It's like drowning. You sink beneath the dark water with fear and despair. You bob up into the sunshine with exhilaration and hope. Over and over every day.

Thanks for being first, everett. I believe yours was one of the names in the Neurology Now article.

I noticed your signature quite about Big Pharma. that is who my next presentation is for - I will be speaking to 180 pharmaceutical reps in training for sellign neurological products. I know it seems that everyone is out for the almighty dollar in the pharmaceutical business, but I find that often there are some who can either identify with the comments I make or who are compassionate. If we can weave just one thread of compassion whereever we go, then it is worth the effort.

Thanks again!
Peg

Living wth PD
 

It's like premature aging, which, along with continuous pain, includes cognitive losses, emotional detachment, and lack of self control.

Paula

It's like being on vacation without an itinerary. Never knowing what the next day will bring.

With regard to meds:
It's like walking in a never ending hilly area, where there is no down, only plateaus and more difficult ups. The first 15 minutes are a bit rocky and you have to take care to pick up your feet and take care with your gait so you don't stumble. The next 30 mins are flat and smooth, after that the next 2 hours are a slow climb up hill and each step is a bit harder than the next. Then you get to the peak, where the plateau is and there is another hill ahead.

With regard to dyskinesia:
Kyskinesia is like being a clown in a side show. One provides entertainment of everyone around. There is a positive side to dyskinesia. It can eliminate the need for a diet. We get to lose weight without one.

With regard to lack of smile:
People want to know if you are okay or they want to know why you are angery. My mother use to say to me, "Smile, you look so angry."

With regard to standing up from a sitting position:
Just more entertainment for the people around you. If there is nothing to grab hold of, you have to fold yourself into the "nose to tops", stand up and then unfold yourself. Oh yes, then you have to get your feet to move!

One more:
PD allow me to test my ability to pick things up off the floor, since I spend so much time putting things there...aka dropping things due to clumsiness.

:hug: to you Peg

Alas, PD is a real bummer.
 

Carolyn, your metaphors (I think they're metaphors) are just wonderful.

From BEM in PA:
Having PD is like falling down a mountain side. Once you've fallen, there is no turning round and climbing back up, the only way is down. At first you can grasp small trees and pause on rocky outcrops, but the mountain side gets steeper and steeper, the rocks get sharper and sharper, and even if you've survived, broken and maimed, almost to the end, the final drop off will kill you.

PD is like a bus that only picks up. Once you're on board you can never get off again.

PD is like old age. You no more say "Get well" to people with PD than you say "Get Young" to old people

paul, Carolyn, and BEMM - thank you! these are wonderful!

More??

Peg

PD
 

Hi Peg,
PD is a fresh challenge every day. You have to win every time by telling yourself you are improving. Where else can you have such an exciting daily challenge!!
Ron

Article on Virtual Support Groups
 

Luv your attitude, Ron! Have you been to Haiti yet?

I think you'll enjoy the article mentioned earlier is below:
(I gave the wrong page numbers. It's Neurology Now, March/April 2007 pp 40-41)

[I]Virtual Support
The benefits of joining an online neurology community.
BY Orly Avitzur, M.D.

Karen Cormac-Jones took her 9-year-old son, Ted, to 22 doctors over two years, but no one could find the cause of his nausea, vomiting, and weight loss. Bobbi Jerome had been going to the same rheumatologist for
10 years, but still had no definitive diagnosis. She didn’t respond to anti-inflammatory medications, so her doctors decided that the problem was psychological and referred her for psychiatric evaluation.

What these two women have in common is that they ended up receiving help from people they had never met—members of online communities who had become experts in their neurological conditions.

Cormac-Jones found the Celiac/Gluten Sensitivity forum on BrainTalk (brain.hastypastry.net/forums) one day while doing an Internet search for her son’s symptoms.
“This forum saved my son’s life,” she says. “Had I not stumbled across this community, I would never have learned about the tests that led to Ted’s cure.”

In Jerome’s case, a BrainTalk member- physician detected tell-tale signs of ankylosing spondylitis, a form of arthritis affecting the spine and joints. He urged her to get screened for it with the HLA-B27 blood test.
“My doctors reacted with stunned disbelief when it came back positive,” says Jerome. “It was as if a dark cloud suddenly lifted—the symptoms were no longer disjointed but had a cohesiveness that finally made sense.”

BrainTalk is one of many online communities where neurology patients and their caregivers share stories. “Many of the people on boards such as BrainTalk come by their hard-won knowledge of complicated conditions through extensive research,” says Glenn Ribotsky, who participates in several neuropathy discussion boards.

Jerome feels that the freedom that distinguishes online forums from in-person support groups also makes them attractive. “We can come and go as we please, and we aren’t expected to meet criteria for participation,” she says. “BrainTalk is available 24/7—how many off-line support groups can say the same?

“The newly diagnosed are typically scared,” says Rick Everett, who developed Parkinson’s disease at a young age. And, several forum members told Neurology Now, physicians either don’t have time for all their questions or simply lack the answers for many of the mundane issues that come up. Patients, in turn, are often left to fend for themselves.

Jan Richardson discovered that members of the multiple sclerosis (MS) forum on BrainTalk often know how to cope with medication side effects and symptoms like fatigue, spasticity, and bladder problems. Diane Zabel joined BrainTalk shortly after undergoing deep-brain stimulation surgeries for essential tremor. “There are day-to-day frustrations that come with this disease...being unable to feed ourselves or drink from a cup or full glass,” she explains. “The forum is the place for answers.”

Pamela LaBlake, who sought out BrainTalk when her son Matthew was diagnosed with Tourette’s syndrome, says that she can ask any question, no matter how “insignificant,” without feeling intimidated. “The answers come from the heart because other parents have gone through the same things… increased tics, difficult school issues, problems with medications.”
realize that you’re not alone."

“It had been an excruciating and lonely experience,” NeuroTalk (neurotalk.org) member Kim Helton told Neurology Now. Helton, who has trigeminal neuralgia, says she “was desperate to speak with one person like me…the thought of talking to many was almost beyond my comprehension.”

For people whose isolation is compounded by geographic seclusion, discussion boards are a godsend. Richardson lives in a small Canadian town in Ontario. It takes five hours to drive to the nearest MRI center or the closest neurologist. “The forums make the world feel smaller and a bit safer,” she says.

“On the forums, I can find people who walk in my shoes,” says Carolyn Stephenson, who has Parkinson’s disease. “Doctors have clinical knowledge, but can’t make the connection with a patient that another patient can.” A member of the NeuroTalk forum, Stephenson is also the Web master of the Northeast Tennessee Parkinson’s Support Group (tennesseepd.net).

Members are often up-to-date on the latest studies, and frequently post links to journal articles and breaking news. "It's wonderful to be able to access the latest research and anecdotes at one site,” says
Ted’s mother, Cormac-Jones.

Richardson notes that the MS forum is chock full of informative links—to clinical trials, scientific abstracts, other MS web sites, journals, and press releases about research advances. “Theories are discussed, snake oil cures are debunked, and support is given to all,” she says, emphasizing that no question is “stupid.”

The overwhelming majority of moderators are not physicians, but because members are hungry for credible research and advice, but because members are hungry for credible research and advice, online communities are surprisingly effective at catching faulty information. “BrainTalk is not a replacement for my physician, neurologist, or pharmacist. It’s just another approach to continuing education for an illness that’s often unpredictable,” Richardson says.

The forums also change the way members communicate with their doctors. “I no longer go in accepting what is said to me. I have the courage to ask questions,” says Braintalk member Cormac-Jones. She says she also feels
more comfortable discussing different approaches or treatments.

“I learned that you have to be in charge of your health,” says Suzanne Thompson, who lost her father and her sister to aneurysms. “Finding these communities helped me to find myself, and later inspired me to become proactive about awareness and education.”

Members of the Hydrocephalus Forum urged Kathi DeGrand to talk to her neurosurgeon about seriously considering a shunt revision. Without their support, DeGrand believes that she would have been unable to advocate for the surgery that put an end to her headaches. support each other through thick and thin.

“When you can reach out and help someone who is going through what you have, it comes full circle,” says Thompson. “You start out looking for support, and eventually you are the one helping others.”

Paula Wittekind, a member of the NeuroTalk Parkinson’s disease forum, says her experience dates back to the days of the forum’s inception. While there, she was inspired by a wellknown Parkinson’s activist. She went on to create a site called grassrootsconnection.com and became a charter member of the pdpipeline.org, advocating to improve clinical trials. Wittekind says that the forums also serve as a means for sharing good times and bad times.
“We discuss how our diagnoses affect our family life and social life, how hard
it is to have to leave the workplace, and how our illness affects our relationships with our spouses and children,” she says, reflecting, “We know that we are always there for each other.” NN

Register at website to get a free subscription
 

PD
 

I feel like I am in a gold fish bowl able to see what is going on in the bigger world but no longer able to take part, with every day "as good as it gets".

Chris
Suffolk, UK

PD is like
 

PD is like a weather report,
Your PD weather for today is:
cloudy with a chance of sunshine -
then the weather suddenly changes - and the weather man says:
well folks - like I said,
thunderstorms today with a chance of hail ?
;)
but next week looks great!!!

For me my experience has been bittersweet..I have the ambition to build a house..but havent the motovation to go to the lumberyard..In many ways pd has been the teacher..and I have been the student

great idea!
 

(This is my 2nd attempt to post something. If it's a duplicate, I apologize). My name appears that I responded to Steffi's post "On reading Rosebuds latest post on her panic thread...)but I can't FIND the post??! It's the weirdest darn thing. Can anyone else find it? I'll figure this out one way or another ...

Peggy,

That is just too cool that you do this! It's needed and if it educates even one person, you will have achieved something good.

For me, PD is an unknown and the unknown is often scarier than the known. Even more difficult is that each person has different symptoms, we each progress differently, we each take different medications, etc. As an example, my daughter (18) attended one of my neuro appts. and walked away upset. She said, "Mom, he didn't really examine you, didn't really discuss anything, so what's the point."

I tried to explain to her that because each case is so very different, it is up to US to initiate a discussion, and for US to tell him what bothers us. How many other diseases are like that?

At the same time, I try to see the "blessings" behind having PD. It truly does help me keep my priorities in order. I am also very, very thankful that it's a long-term degenerative disease instead of something like cancer.

I have tremendous faith that I was given this disease for a reason ... look at how many people's lives I'll be able to impact between now and then.

But the one thing, above all else, that needs to be mentioned is that SO VERY MANY OF US WERE MISDIAGNOSED simply out of ignorance. My first neurologist refused ... flat out refused ... to give me a diagnosis. Was it done to spite me? Absolutely not. He honestly and truthfully believed that I didn't have it ... in his eyes ... I couldn't have it because I was simply too young.

My engineering husband believed him, my soon to be engineering daughter the same, my marriage counselor was beginning to second guess me, my pastor, and even my own family. I was living an absolute nightmare with no one to turn to. I was also accused of "neuro shopping" to get the diagnosis I wanted. (Yeah. Right). To this day, I continue to see that neurologist (I see both), to enlighten him, and to prevent another patient from having to go through what I did.

Ironically, when I DID get a diagnosis, the first neuro was totally floored. Like I said, he truly believed what he said. The very next sentence out of his mouth was ... "Well, Baylor has better lawyers than I do." at which I told him that I simply wouldn't sue anyone unless it was blatantly done with no regard to the outcome. We all make mistakes and his was out of ignorance.

If you can somehow use those comments, go for it! I'm sorry that it's not concise.

Best of luck to you, Peggy, and please continue to enlighten people!

Terri
aka proudest_mama (age 43 symptoms began, age 44 when finally dx)

Peggy - and everyone else who's contributed to this thread - I hope you all don't mind but I have a big speech myself coming up this week and I'd love to use some of your words and descriptions too!

You've all expressed your thoughts and feelings so well that it would be a shame if I didn't share them with others. A lot of you have years of experience with this disease that others truly need to hear and be exposed to. I hope that's okay.

With much respect and admiration to all... :)

well
 

It's like trying to stop a freight train. The freight train keeps on coming and it always wins.


It's like fighting a battle that you can't win, yet you keep on trying.

It's like having your body taken over and you can't do anything about it.

Mary

Just reading this thread again...great thread. Steve, you described it perfectly in that statement, but others see this as laziness. You set out to do ten things and can't remember why you came into a room.

This lack of energy and drive is not visible to anyone and people often just truly don't get it - it's impossible to explain without any proof and lacks credibility to just say - I did want to do that today, but my feet firmly disagreed.

I will remember your quote Steve, and will probably use it. [ Attributing it to you ]

paula

After reading Terri's post I had to add mine. Husband Kevin was diagnosed in 2000 but only after 3 years of trying to find out what was wrong. He asked his Internist specifically if he thought it was PD and was told "no, it's only Essential Tremor - you're too young. This MDS was convinced that I was watching too much TV - this being shortly after MJF went public. Finally after I called the office screaming and refusing to get off the phone without a referral to a nuerologist we were finally given the refferal. The neurologist diagnosed it immediately.

Because Kevin was so phyically active, his sytoms were masked for a long time. By the time he was diagnosed, his arms were not swinging, his face masked and we had experienced falls & choking. I am amzed at how hard it is to get a diagnosis.
Gayle

living in the moment
 

Reading everyone's heartfelt sentiments brought to mind what I find is the most difficult aspect of PD... struggling to live in the moment and not to project. I work hard to enjoy and celebrate everything I can do today, and to avoid thinking about the things that may become impossible down the road. PD is a road you want to cruise not race down.
Sheryl

Life with PD
 

is like being strapped to a Roller Coaster that careens through generally predictable - tho sometimes surprising - territorries which are mostly undesireable locations. Even when it stops, you stay strapped.......until the next go round.....and the next, and the next.....

I prefer the Merry-Go Round! Always did!
:o Ibby

I feel like Princess Fiona (Shrek)

having pd
 

... is like having two bodies and one brain!
cs in ca.

what does PD feel like?
 

The first few years aren't bad. I was dx'ed at 39; had symptoms for several years before.Then things get tougher, the medications don't work "smoothly" and you are overwhelmed at times, with rageing dyskinesias (very uncomfortable, uncontrollable, movements) where your arms and legs take on a life of their own, flailing about and desperately wishing that it would just stop. Then there is dystonia which can happen anytime. Dystonias are like muscle cramps, many people who have experienced wry neck, and "toe locking" can relate to this, it is one of the painful things about PD.
Falling down is another thing that results in a lot of pain. After you have fallen down many times, you are covered in bruises, cuts and gashes; some people break bones, and the more you fall down, the more likely you are to get weaker and fall down more. You also get weaker from spending too much time in bed, recovering from the latest fall. You choke on dry food. You get very depressed at all you have lost; your job, your friends; in many cases your family abandon you. Sometimes you think of suicide.
One of the big problems is that you often look able bodied outwardly. If you are young, other able bodied people suspect you of malingering, and since you were healthy and able at one period of your life, you become filled with guilt and even question your own sanity. Many times a spouse will not believe that you are as sick as you say you are and marriages become split, often because of financial issues.
Finally, you are left a shell of a human being, no longer able to support yourself while facing an increased need for "extra" funds for medication and other medical needs.
And worst of all, you just keep living, and the disease just keeps progressing. Sure , you have a "good day" every once in awhile and participate in some activities, even to the point where people think that nothing is wrong with you, making things even worse for you, because they think that you can "turn on" a good day when you want to. This just leads to more guilt and shame that PD is "all in your head", and to others that it is "really nothing at all". It is the 'non-belief" of the troubles that one suffers from this horrible disease that is particularly disheartening. If people could look at advanced PD patients like a painful terminal cancer patient, they might just slightly understand what most of us are going through. cs

Having PD has taught me how to really utilize sticky notes....when I can remember where I put them. ;)

Thank EACH and ALL of you for your comments! I never could h ave found the words that are as descriptive as what you have used.

And Todd, it is fine with me for you to use them. This forum is public domain, but I like to show a sampling of how far-reaching the coverage is. If any of you have objectios, speak now or forever hold your peace! lol

(Rosebud - Princess Fiona is a very good comparison! I don't get quite as green as she does, however. lol)

Peggy

OK, I feel that the human body is only a sort of power plant that the brain has invented to stay alive and well fed. Once the brain starts to misfunction, it doesn't realize that it needs all that clumsy structure full of arms and legs and fingers and toes, and that's when disaster strikes and chaos ensues.
Sometimes I feel like a car without an engine and sometimes like an engine without a car. And since I'm in full philosophical mode, here's this from Kierkegaard:
Life is a deadly disease!:)

A real long time ago when I saw a person with Parkinsons for the first time I have to admit I sat at the table and kept looking at him. He had a set face that never laughed at my jokes or smiled even and the thought came to me later that night that i was looking into the face of a crying heart.

So to me the Face of Parkinsons is looking into the face of a crying heart

Some PWP lose muscle tone in the facial muscles and have an expressionless look on their face and dont necessarilly have a crying heart..It just appears that way

Peg
 

IT's very diffficult to hold your piece forever; loooks pretty strange too.:D :D :D . ol'cs

LOL :D
I needed that one!
Peg

Forever is very difficult..But without Sinamet, we could hang in there for a long time..:D :D :D

Having Pd is like being a a weaver who has run out of wool, you just keep reweaving the old stuff, trying to keep it all together, but knowing that each day some part of you is weaker than before.

Having Pd and dyskinesia is like watching the performance of a street performer, but the performer is you.

Trying to keep your cool is impossible when your tremors erupt each time you are nervous and you have to ask for help to get them stopped.

Having PD is like walking through thick gelatin or muck, up to your armpits. Just the movement of a few yards can leave you in painful exhaustion.

Having PD robs you of self worth, for the words that used to be your friend now lay twisted in your mouth or caught in the cobwebs of your brain, making you appear brainless. You feel as though your intellect slides out with each forgotten name and detail.

Kathy, dx with parkinsonism

What's it like?
 

It's like being a fly caught in a spider's web that struggles and struggles to get free but finally becomes overcome with exhaustion and cannot struggle any more and the end arrives.

Living with Parkinson's is like tamping down your panic about the future while mustering up the courage to live the present while knowing today is probably for you the best it will ever be.

Ann

hey peggy
 

Learning to live with pd: living despite it or to spite it

:hug:

dx at 26, i'm 42 now
alota years under me belt,lol

when you have pd
 

So far so good, it's been 1.5 yrs since dxed. Whenever you make plans for future, in your head you are saying, "but wait! I have pd, what will I be like then, can I even do these things then?"
You get depressed alot, you wonder sometimes if you even have it, your family doesn't think you have it, it's just you looking for sympathy, whining again.
You find out your company offers long term care coverage with an introductory offer of one month w/o a physical if you sign on, and that's the most exiting thing that has happened since you were dxed! Imagine, long term care insurance, so your family won't go broke when you finally need that much care. How exiting, yuck! Who wants to live that long, but you know, no doubt, you will need care.
You are tired constantly, feel sooo old. You don't know if it's the pd or your age or you've overdone it, but whatever, you blame everything on pd.
When you talk to people and somehow it comes up that you have pd, you try not to feel sorry for yourself and say, "Oh whatever, everyone has something!" But truthfully, no one knows what it's like to have pd. Even I don't yet, haven't really had it as long as some. So far, it's no picnic.
I had someone tell me yesterday that she saw Michael J. Fox on tv and he looked so bad! Was jerking everywhere, out of breath, etc. That made my day, but hey, she was just making conversation. Inside you're just praying you never get that bad.
Sigh, I know I sound depressed, I am, but not always, just today. I just switched from effexor to cymbalta, so maybe that will help.
Good thread.