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Diagnosis Advice

  • By Chris H. Keymaster

    Receiving the diagnosis of Parkinson’s disease can be one of the most difficult things one will face. Now that you’ve been diagnosed, what advice would you give to others who have been newly diagnosed?

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  • By 2dogs

    Ask for copies of all your doctor’s notes from your exams. It’s the way to discover what your Dr. is thinking in regard to your symptoms and I also found out what tests she plans to have done under certain circumstances! Lots of things time just did not permit a full discussion of during my diagnosis appointment. We can get jolted pretty hard when we hear those words,”I think you have the symptoms of Parkinson’s.” You might even forget a lot of important stuff you are told to do, how to take meds, etc. But guess what? It’s all written down in the doctor’s “Summary of Visit” notes in your file. All you have to do is ask for it. You might still be confused about terminology, etc., but you will have something to refer to and you can look it up! The internet has a lot of information – so much that you might be intimidated and not even know what pertains to you personally. Those doctor’s notes are gold, in that the conditions, tests, and plans are written down for you and we all know Mr. Google is our friend. If you still have questions at the time of your next visit, take your own file along and ask about those things. Knowledge is power and you will gain confidence from knowing the facts.

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    • By Chris H. Keymaster

      These are awesome suggestions, 2dogs! It can definitely be jolting to hear you have signs of Parkinson’s. Your comments are great to keep in mind when preparing for a doctor’s visit. Thanks for taking the time to share this with us! – Chris, ParkinsonsDisease.net Team member

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  • By popuppy

    Good advice. For me because i was diagnosed and my treatment is with the V.A., they have web site that has all my doctors notes. My neurologist was very open about all the tests and why I was diagnosed with PD. I can also send them messages on that web site and they reply quickly.

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  • By FrankMundo

    I would recommend that you do not wait but immediately get into a PD support group. That will help you to realize that you are not alone, there are people with the same disease that are getting along quite nicely and who can empathize with you. They will be a source of information and, in some cases a source of inspiration. And they are frighteningly normal.

    PD meds (often offered as part of the diagnostic process). . . will work and will reduce symptoms. For many, your symptoms will significantly diminish or disappear. Don’t hesitate to take them. They’ll make you feel whole again. Unfortunately if the diagnosis was pancreatic cancer the meds would be pain killers . . .

    Recognize that this a long term and gradually evolving disease and that with medication, exercise and some effort you’re going to be around for a long time. If you’re early onset, we’re talking 20-30 years. If you’re an oldster (65+) you’re probably looking at 10, but how long did you expect to be around anyway? You can ask your neurologist “How will I die” and she’ll probably say what mine did when I asked her . . . “Oh, you’ll probably die of Cancer, a Heart Attack or maybe a Stroke… like most people. ” Cheery thought.

    Alas, a PD diagnosis does not give you a pass, you do not, necessarily pass GO and collect $200. Same goes for aging. S__ happens. The rest of your life you can pin all your ‘aging’ symptoms on your PD. Or maybe leave a lot of it where it belongs. Mileage happens.

    I think for many people, the worst part of being diagnosed with PD impacts you psychologically – you are likely to be depressed or experience apathy towards life. You can spoil or significantly diminish the best years of your life with negative thoughts. You need to try to nip this in the bud… fast. Get professional help, spend time with seasoned PDers. If being depressed persists, take antidepressants.

    I’ll say it one more time. Find people who have PD and talk with them. If you’re experience is like mine was, they’ll have more credibility than anyone else.

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  • By TomShep

    When one hears these words, “you have Parkinson’s Disease” most of us don’t have a clue as to where it is going to lead. But it soon becomes obvious that a lot of people are going to be involved with your journey. This is your TEAM.
    If one is proactive in dealing with their PD symptoms much of the team will just naturally fall into place. It is important to have all the pieces in place as the disease progresses
    In my case and frankly, without a lot of forethought, a team has come together to accompany me on my PD journey.
    Knowing what I know now a team will look something like this:

    CARE PARTNER
    assists in living life
    builds knowledge base for future use
    advice
    understands medical language and can pass along
    has partner’s best interest in mind and not afraid to be a strong advocate

    MEDICAL- TREATMENT TEAM
    NEUROLOGIST – MOVEMENT DISORDER SPECIALIST
    doctor’s staff
    medication
    treatment
    advice
    information

    NEUROLOGIST – second opinion

    NUTRITIONIST

    PHARMACIST

    OTHER DOCTORS

    THERAPISTS
    physical, occupational, speech, message

    VENDOR REPRESENTATIVES – a good source of information at conferences

    FAMILY
    back up the care partner
    offer assistance

    FRIENDS
    socialize – as important as the meds you take, isolation is the worst thing
    encouragement
    laughter
    support
    Have a “go to” friend or two

    SUPPORT GROUP
    gain knowledge
    new friends

    The support group is an invaluable tool in gathering information from guest speakers and group members.  You make new friends who share a commonality that none of them asked for and you can make it as personal as you want it to be. With these new friends comes a better understanding of what seriously ill people are going through and a new appreciation for their daily struggle. Don’t hesitate, join a support group now. Not only will you learn a lot from speakers and fellow group members but you will meet some very interesting people who will become good friends.

    EXERCISE TEAM – very important, do not overlook
    fitness trainers
    Rock Steady Boxing – fun, camaraderie
    musical groups
    dance groups
    cycling
    Forced Intense Exercise
    FIND AND DO SOMETHING

    THE ONE IN THE PD BOAT – Yes, the PWP has a team responsibility also

    acceptance – It is what it is
    take care of yourself
    knowledge
    volunteer
    internet
    reading
    symposiums, conferences
    make the doc’s job easier, be prepared
    mission – what is yours?

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