typo- bile means bike

ive got a parent who consistetly downplays every symptom ive got as....."oh yes we all have those issues thats just getting old".....even though im 46...........i hate being belittled and patronized......even my dr insists that since mjf is doing great i have nothing to worry about.......im tired of the mjf facade.....its used alot to diminish the severity of PD symptoms.


peace

Brer T

MJF makes me want to scream and not in a good way either. My family reacts the opposite of yours and think the diagnosis of PD would be a valid reason for jump off a cliff.

thats for darn sure on the mjf thing....


Brer T

I definitely agree with your guys!!!! They see what the meds do on the outside but do not see what the meds do not do on the inside body parts. When I complain to my boss of the rigidity and pain he tells me it is probably arthritis. I told him I don't think it is arthritis because when I take Pd meds it goes away. They give me so much work at work it is unbelievable how I do it. I tell you, I am my own hero. Unless you walk in my shoes (which you guys do) people do not understand the exhaustive the exhaustion caused by PD can be, or the illness I get when the stress is too much - it feels like all my nerves have been cut by a pair of scissors and lie open tingeling and dangling especially in my head. It doesn't hurt actually but it is bothersome in that I think it feels just like the flu but without the pain but then with the stress I start getting rigid and the pain does start and loss of balance.

I meant to write, "how exhaustive the exhaustion from PD can be." I wish they had edit buttons. I also wish they had like buttons like facebook.

People who are not PD patients have no right to make fun of our problems coping with the disease. Although my meds help some they don't help control everything. Last night I broke down and cried because I couldn't stand my left hand tremors another second. Some people do make fun of my insisting I take my meds on time. I am singing in a choir concert this weekend. My friends are mostly supportive. One friend said don't quit the choir until they throw you out.

i usually feel like im hooked up to a car battery inside..........my insides twitch like inside my muscles its hard to describe. very uncomfortable but noone sees it or the rigidity pain which i try to hide.


BT

Unwanted advise from friends, family coworkers or strangers is usually well intentioned even if they are idiots. they make recommendations about your health when it is none of their business. Use their interest as an opportunity to educate and then to fundraise ffor pd research. Nothing will shut them up like asking for money. You could have some cards ready to hand to those annoying mofos referring them to mjf or pdf to learn more about pd before talking to you again.
don't let them bring you down. they just don't know. Alex

Hello Frusss,

I feel your pain, sistah! I have gotten the same kind of crapola from my peeps. If you have the energy, try giving them a few facts to chew on. If you don't want to waste your time, download an article (short one) on PD and muscle rigidity and the function of your meds and hand them out. The next time they make a suggestion, ask if they read the article you gave them. If they did not take the time to look at it, then tell them you don't take medical advice from the "uninformed." If they can't say something constructive then they shouldn't say anything at all.

To Debfromnj,

I worked before, during and after being diagnosed with PD and while trying to find the right meds. I worked in the accounting dept. of a huge law firm generating legal bills (over 3500 a month). I had difficulties with the first med which would only work for about 2 weeks and then I would become symptomatic again. I made a lot of mistakes because I couldn't remember instructions or concentrate. I would fall asleep during a conversation or sitting up in my chair because I couldn't sleep for 2 or 3 days at a time, plus I was hallucinating. This inability to function caused my co-workers to become very hateful. With all of that stress to deal with I ended up taking advantage of the company counseling program. They in turn sent me for a psychological and cognitive function workup. (I was worried about the stigma associated with this, but I felt so bad I did not care.) The workup showed mild cognitive impairment due to side effects of the med and lack of sleep and major depression due to the stress at work. After a suggestion from the psychologist to my employer (no medical information was given to the boss) my workload did start to decrease somewhat. This event caused my co-workers to get even nastier. After a particularly hateful conversation, I made a decision to go out at lunch to the pawn shop down the street and buy a gun. Fortunately for them, I didn't have the enough funds on my credit card so I went back to the office and sent an email to my supervisor telling her I was leaving and why with a copy to each b_ _ _ch. I took my stuff and walked out the door, down the street to a homemade ice-cream parlor, got a double dip of butter pecan ice cream and proceeded to have a breakdown.

I filed for disability the next day and within 5 months was approved. That was in May 2011. As of July 1, 2014, after being treated by 2 other neuros and various combinations of medications, I have completed a 4 month physical work assessment through Goodwill, been to college and taken 2 accelerated classes to become certified as a Medical Administrative Assistant and an Electronic Medical Records Specialist. Rather than look for a job using those credentials during the holidays, I started working at a local department store as a Point of Sales Associate (big title for cashier) and I am having the time of my life. I qualify for 15-45% discount off my new wardrobe purchases for the future job I am going to get.

I went through that whole story because I want you to know there are other opportunities available and you don't have to stay in a job that will end up working you to death. I am well-over 55 and thought my work life was over. Well, its not. I found a Back to Work Program for 55+ by sponsored AARP at a local college that gave me a grant to go to school. I am even considering transferring the credits I just earned to a 4-year program and finishing my degree. So, if you are stressed to the max in your job, take a look around and see what's out there. It couldn't hurt.

Have some fun!

Sorry Folks...I just read my last comments and I must apologize. I thought I had gotten over the anger, but I guess there was a little residual left over. I especially regret the mention of a firearm. I grew up in a time when mention of a weapon indicated a frustration level not an actual act. This is inappropriate today and I hope you will not think me insensitive or boorish. I'll try to keep the "lid" on in the future.

Many of you shared a lot. Thank you for helping me feel I am not alone.

Ach! These posts are heartbreaking & brave. I think most of us in this group have experienced the frustrations you express, Fruss.

One of the hardest things for me is dealing with the confusion I see registered in the faces of people who cant read my flat expression, and when I have trouble articulating my thoughts verbally and struggle to grasp the right words. I know its hard for some people to be with me these days, either because they feel uncomfortable because they dont understand the disease, or they just dont have the patience. And there are days when I also feel that having PD is a valid reason for jumping off a cliff or at the least having a very good cry.

Brer, your analogy to the car battery is perfect. I get internal tremors, too, but didnt know others did. Sometimes I want to turn myself inside out & shake out all creepy-crawlies.

I like your approach, Alex - Use their interest as an opportunity to educate and then to fundraise for pd research.Maybe Ill print up some business cards w/some facts & fundraiser sites for the sincere as well as the pests!

Deb, I agree with S Babe that you might want to explore the Disability option. I tried so hard to keep up with the demands of my teaching job (4th graders). I didnt want to compromise the quality of my teaching & was determined that if I only worked harder & longer I could manage. I took to napping at my desk or in the nurses office during my prep periods. I was staying at school until 7:00 or 8:00 each night trying to keep up with correcting papers, writing lesson plans, report cards, scheduling parent-teacher conferences, etc. I loved my job; I loved my students and their parents. But I was exhausted, and was physically wearing myself down to nothing. I looked so awful people would sometimes not recognize me. I finally realized that continuing in my career was a disservice to both myself and my students. No parents had complained but I knew it was time to leave.

The Board of Ed approved my request for early retirement based on disability, enabling me to start collecting my pension, albeit at a reduced amount. I then applied for NJ SS Disability. Dealing with state agencies is rarely a walk in the park, and this was no exception. But with perseverance and a good lawyer, I won my case.

If you feel the PD has made it impossible for you to perform your job properly, maybe you can talk to your neuro about establishing partial or total disability. Taking a page from S Babes script might be something to think about.

Thankful today for this wonderful, non-judgmental support group!

I know Frusss we get so much understanding and good experience on this site!!!

Shakeybabe, I laughed when I read your post because I know how you feel!!!!! There is a group on Facebook that is named "But you don't look sick." I think that is funny because this is what in our early medicated stages thing about us.

Thank you for your share and you guys are so right. I know that when I retire if the stress of medical bills, etc. is worse than when I worked I can go to other places. There is life outside of my job and it is waiting for me. Yeah!!!!!

Sorry it took me so long to reply but I've had a viral infection for 3 weeks now and am just feeling better. I'm trying to hang in there until July when I retire but if not it is close enough I will just go.

Here's what I get all the time and want to screen... Oh my (whatever) hurts, then they look at me and say oh but i'm sure not like your pain... it sounds condescending and mocking to me so i have become very good at masking my pain, only cry alone and never talk about my pain. My youngest daughter understands though when she sees a certain look on my face or struggling to walk on my rigid feet and ankles she never says anything... just sits down and manipulates my feet.... in big circles, you could feel they aren't smooth like a cog wheel... but she just does it and stretches then something happens and they are circling smoothly ... when she feels that she stops and i am able to walk better... i thank God for her and her understanding every day...