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Wednesday, March 13, 2013

You Have Just Been Diagnosed with Parkinson's, Now What?

First, don't panic. Go ahead and get mad, throw a fit, cry for a while, then get over it and get on with your life. It's just Parkinson's disease, it won't kill you. It could be a lot worse, you could have cancer.

Second, find out all you can about Parkinson's, go to the Parkinson's Association websites (I have links on here), talk to other Parkies (link to chat room on here), join a local support group. The more you know, the better you can do what's right for you. Don't count on your Doctor to tell you how to handle this, their job is to treat the part of your brain that is messed up. It's your job to figure out the rest. If there is a Movement Disorder Specialist (a neurologist who is a Parkinson's expert) within driving distance, try to see him or her. If not, see a neurologist, your primary care doctor isn't going to know enough to treat you properly (even though they may think they can).

Third, laugh. Laugh a lot. Parkinson's will make you walk funny, talk funny, write funny, think funny and make funny faces, so you might as well have fun with it and laugh.

Fourth, plan for your future, now. If you are younger, you will probably need to quit working before you thought you would, so start planning to be able to go without a job until you can get approved for disability (which in the USA can take several years). If you are considering moving into a different residence, think about stairs and tight hallways and tiny bathrooms that might give you problems down the road (the key word in this sentence is might).

Fifth, start being pro-active right now. Eat more fiber; it's not hard, buy a cereal with whole grains (Cheerios, Frosted Mini-Wheats or Raisin Bran). If it's not what you are used to, mix it in with your regular cereal. Buy whole wheat bread (they make some that tastes just like white bread). Add some carrot sticks to your evening snack, or a Caesar salad at dinner. 
Exercise or at least get up off the couch and move. Take a walk, stretch up and touch the top of the door frame every time you walk through a doorway, take extra long steps on the way to the fridge to get a bowl of ice cream. Parkinson's will make you curl up and get small, so fight it by doing things bigger.

Sixth, pay attention to what your body is doing. Make a chart of your symptoms, especially when you have a new prescription medicine or changed the dose. There is no testing for Parkinson's, YOU have to tell your Doctor exactly what is going on, so pay attention. Did that weird sensation start before or after you took that new Rx? Did the new Rx make you feel better or worse? Did it improve the tremor but cause another symptom? You NEED to know this.

Seventh, learn the Parkinson's medical jargon. After all those years in Medical School, your Doctor has forgotten how to talk like a normal person. He will only speak "Neuro-lese", so you best Learn the Lingo.

Eighth, talk to your family. The natural impulse is for them to "take over" and do anything that you have trouble doing. Tell them, nicely, that it is best for you to continue to do as much for yourself as you can. So what if it takes you fifteen minutes to button your shirt, you just need to start earlier. Ask them to please ask you IF you want help. If you do need help, ask for it, but be sure to say thank you afterwards, and mean it! Your whole family is affected by this Parkinson's thing, and they are just as scared, or more so, than you are.

Ninth, be aware that you are going to change both physically and emotionally. You may find yourself sleeping less, you may not enjoy the things you used to. Your face may become blank. All of these things can be harder on your family than it is on you, so try to be extra nice to them and explain ahead of time what might happen, so they can be prepared. 

Tenth, don't take Parkinson's too seriously. A positive attitude is actually beneficial for us. Laughing can stimulate your brain to produce more dopamine, so go ahead and cry, get mad, but then become a Happy Parkie. Keep a positive attitude, it REALLY does help.

And last, beware of people touting miracle cures. Yes, they may make you feel better for a little while, but if it was a real cure, one of the big Parkinson's Foundations would be shouting it from the rooftops.

Clicking on the colored words will open a new window and take you to a different story or link.

5 comments:

  1. I especially like the laughing part. My doc has put off my appointment for the 2nd time, no biggie. My symptoms are worse at night, but bleah. I'm laughing up a storm at all kinds of nonsense. My latest guilty pleasures are the Einsteins over on TRUtv, the World's Dumbest _______ and America's Favorite Videos. Of course, our cat is always hilarious. She is currently fighting JC's shoes in some kind of winner-take-all contest. The funny? She keeps getting a claw caught in his shoe lace and then she runs like a bat out of hell, dragging shoe behind her. Priceless. Thank you, my love, for all you do for us!

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  2. The way you have tackled PD is inspiring. Meeting it full on and not letting it affect your life is incredible, almost throwing it back in PD's face by laughing at. :D

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  3. Hi - I really enjoyed this post because I have PD also - diagnosed almost 2 years ago. I've joined your site now and will look forward to more of your posts. I love your attitude and admire you so much. You are making a diffgerence.

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  4. Hi Bev.
    Your blog is so amazing & your way of explaining information about Parkinson's disease is brilliant. I always learn something about PD that I never knew -- and I've had the disease for at least a decade!

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  5. In sufferers with Parkinson's ailment we have to figure out the source of the pathology, whether it is degenerative cause or perhaps vascular origins ( ailment of penetrating blood stream ). To do this to some extent you should require a TAC multiple slide and thus to be able to differentiate one from another. The comparison is essential since even though it is not mathematical, as neither the medication is, on the whole, sufferers with vascular Parkinson's react even better. In the EP, the affected person will get a therapy in 3 infusions, split up by 1 or 2 months each. One of infusions could possibly be performed by means of exclusive catheterization, determined by the evaluation as well as choice of the health care professional.

    Oxygen hyperbaric will likely be found in these kinds of earlier situations as well as later therapy. The success rate is determined by the evolutionary time illness along with the etiology of the ailment. We are able to obtain breathtaking outcomes ( 98% restoration ) or null. The essential thing is the fact that in barely any of the situations we have had any kind of issues or even demotion of the affected person.

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