parkinsons disease

 hi there-

 

  my name is fronya and this is all bew to me still.  i was diagnosed

with young onset PD in may 2002.  5 months after i had an anterior cervical fusion and alot of the symptons stayed.

  i'm 47 now and have a wonderful nueroligist who has worked with me for almost a year before we found the rite combination of meds.  i'm leading an almost normal life but for one sideffect.

DYSKINESIA.  AS MY HUSBAND DARRELL AND I CALL IT THE WIGGLES.  i'm on stalevo-requip and symmetrel.  the symmetrel really helped alot at first but it doesn't seem to be working quite

as well anymore.  i'm taking it 3 times a day. 

  i'm open to any ideas to help me with this very frusting sympton.  i have hurt myself quite a few times especially in the kitchen for i love to cook.  sometimes darrell has to take over!  my next nueroligist visit the 22nd of this month.  i'd love to take him some new ideas on this problem. 

 

 

                                            thanx bunches

                                                      fronya        03-07-2005

ladykassie-

I would really like someone to talk to. I hate to keep reapting the same thing over and over to my husband even tho he is a great listener it has to get old for him after a while. I have not talked to anyone that is involved with someone that has PD or that has PD themselves! I no i should go to a support group meeting but then i guess that would make this disease real to me, also i hate to bother people to drive me places that are to far for me to feel comfortable driving by myself.

I thought Parkinsons was not passed through generations?

.. ;0)

Hmmm, never thought of that..
but.. let's help you.. you can ask me anything you want Fronya, I will help you as much as I can.

have you told your doctor about this?

Wow, Fronya.. you are going through some stuff. I also heard the sometimes people are missed diagnosed with parkinsons. I do not know anything about dyskensia. Maybe a new treament. Fronya, I am sure you have heard this all before, and I have no information to give you about that, just support and suggestions. Sometimes people from outside your comfort zone, and across the country can help you have a different perception of things.
Do you have any awareness when your dyskensia is going to start? If you do, that is excellent. Take some steps to learn how to control this. It will take a lot of energy to do this the first couple of times, but it gets easier. Your mind is a very powerful tool. Learn how to use it. Learn as much as you can about this to help you control. Don't give up. If you do, it wins and we don't want that. Do you have any hobbies, writing, arts, crafts, reading, anything? You can write.. you can write stories for children.

p.s. alice-
what would make you think that i could have been misdiaginosed?

Yes.. my mom did loose her taste.. everything didn't taste good. Keep a close look at your tongue.. my mom got an infection due to the meds or something. I know this is going to sound heartless, but you might have to start looking into finding a GOOD place to for you to be. Some place where you can get 24 7 care. My mom, if she wasn't so stubborn, god, I miss her, I could of gotton her in a better place and she would of had the care she needed and maybe would of dealt with things better and learned how to handle situations. It's good for you and your husband to really consider this..

I know.. and that is so great.. but I am talking more down the line Fronya. I didn't mean to sound it that way. Just for you and your husband in the furture.. Yes, you do have a long way to go. It's something to really think about. '-)

Hope I'm not being rude by jumping in on your conversation.I also have parkinsons dx in 98 60 yrs old .I'mcurrently taking mirapex,stalevo.I have been on sinemet,sinemet cr and selegine.The medications allow me to work,My major symptoms are walking problems,tremors left side,and numerous minor problems such as muscle soreness,minor swalloing problems speech and others.I have an excellent neurologist specializing in movement disorders,and a very undestanding wife .So i consider myself one of the lucky ones.My philosophy is keep a good attitude,exercise,get as much knowledge on this disease as possibleandnever give in to it.Wishing you the best,Again hope I didn't interrupt.

Hi everyone-

I was diagnosed with young Parkinsons last year (I am about to turn 38). I find it difficult to try to talk to my wife and family about it, I just don't think they understand WHAT this is. My immediate family is not very supportive (no calls to see how I am feeling), my wife listens to me, but I wonder if she really understands what I have been diagnosed with. She seem's to (at times) but, when I mention that I have trouble concentrating, she thinks I am making up a story.

Recently, I started having very sore knees, well, starting at the middle of my thighs extending down to the beginning of my calves. I am also having problems with my balance at times along with restless nights. I explained this to my neurologist and asked if he could confirm/approve my application for disability/handicap parking, he did, but with a lot of crap to go along with this. He put me through a series of tests, range of motion, walking and handwriting. I was feeling very tired that day and did  not feel like going through these tests, but I managed. He told me since my handwriting has not gotten 'smaller' or I don't tremble when I right, he wondered if I was 'faking'. He told me it could be the Requip I am taking, nevertheless, he singed my apllication for 'temporary'

parking. Sometimes I wonder if he has made the right diagnosis for me. I am in the process of second a second opinion (which I should have done initially). Was wondering if anyone else has had these symptoms or am I making them up? 

kevykev,
Please excuse me for butting in here... but I helped my mom-in-law deal with her Parkisons's until her death in 2000, and I know some of the meds and methods have changed since then, but MAN Alive!!! Get a new doctor! If my doctor accused me of 'faking' I'd probably sue him/her! What a heartless thing to say! Yeah, like you're faking having this disability and you just want a closer parking space for all your fun shopping sprees! We went through a number of inane physicians and neuros until Mom went to University of Michigan and eventually was referred to the greatest neuro back here in Lansing. The experience we had was that most neuros we saw looked at Parkinsons as a hopeless, downhill disease and they had very little appetite or enthusiasm for trying new stuff. They just sort of shuffled her through appointments and said, "See you in three months..." At one of her last bad appointments (with a moron who happened to have an M.D. after his name) he made Dad move out of a chair so he could sit as far from Mom as possible. He never so much as touched her during the appt. and didn't really listen to her. I left that appointment steaming! I may be just projecting my anger at that doctor on to yours, but I would give some serious thought to finding someone with more understanding of the emotional ramifications of the disabilities that accompany this disease. Just my two cents...

Dear Kevykev

Never allow a doctor to speak to you like that!!  Its your life!!!  Dont stop trying even if it means going to four or five neurologists.  I know of many sufering from chronic illnesses and all have told me that they they had been to a range of Drs for opinions..  Find one with whom you are comfortable with.  Whatever the medication you have been prescribed, make sure it works for you.

Your wife maybe in denial...I am saying this as I know my mum was with my Dad.  Allow her to accompany you on Dr visits.

Good luck and hope that all goes well.