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      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
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      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
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      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

Forums

  1. Forum Information

    1. Discussion Corner Announcements

      General information regarding the Discussion Corner and the use of the forums.

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    2. PF Forum Member Service Center

      Direct all technical questions or comments here. ***DO NOT POST ANY MEDICAL QUESTIONS OR ANYTHING RELATED TO PD AS IT WILL BE REMOVED***

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      posts
    3. Frequently Asked Questions - How Do I...???

      Step by step guides on how to Register a username, login, change my personal settings, and post my first question in a moderated forum.

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  2. Medical Questions

    1. Ask The Doctor

      Michael Okun, M.D. and Daniel Martinez, M.D. answer medical questions regarding Parkinson's disease and related matters. All posts in this forum are anonymous.Without seeing you and examining you the doctor cannot make specific diagnoses and recommendations. The suggestions given in this forum are for general information only.

      24,109
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    2. Ask The Surgical Team

      Kelly D. Foote, M.D. and Michael Okun, M.D. answer questions about surgical matters and Parkinson's disease. All posts in this forum are anonymous. Without seeing you and examining you the doctor cannot make specific diagnoses and recommendations. The suggestions given in this forum are for general information only.

      1,867
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    3. Ask about Nutrition

      This forum is an archive about nutrition and Parkinson’s and is not accepting new posts. The suggestions given in this archived forum are for general information only. If you have a question about nutrition, you may post it in the Ask the Doctor Forum.

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    4. Ask the Pharmacist

      Mark R. Comes, R.Ph., answers questions on the subject of medication management in controlling Parkinson's disease symptoms.

      4,298
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    5. 1,986
      posts
    6. Talk To A Speech Clinician

      A team of experts answer questions regarding speech and people with Parkinson's disease. All posts in this forum are anonymous. Without seeing you and examining you the speech clinicians cannot make specific diagnoses and recommendations. The suggestions given in this forum are for general information only.

      538
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  3. Unmoderated Discussion

    1. Open Forum

      An unmoderated public forum for open discussion among Parkinson's patients and caregivers. Posts in this forum are NOT anonymous.

      40,560
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    2. Newly Diagnosed

      A place where all those newly diagnosed with Parkinson’s disease can share their feelings and opinions. Post in this forum are NOT anonymous.

      5,193
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    3. Caregivers Forum

      A place where caregivers of people with Parkinson's disease can converse and address their unique concerns. Posts in this forum are NOT anonymous.

      5,219
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    4. Young Onset Forum

      A place to connect with other people diagnosed with young-onset Parkinson's disease.

      28,041
      posts
    5. DBS Forum

      A place for those with Parkinson's looking into having DBS surgery, or connecting with those that already have had it done.

      1,887
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  • Posts

    • That's a tough one.  You don't seem to have a formal diagnosis, but you have seen doctors, including a neurologist.  So there are records of you having been seen.  That means you might have to disclose it on any application depending on how they word things.   For sure you'll want to get insurance sorted out before you get any diagnosis if at all possible.  Even with the protections for pre-existing conditions built into current law there's still not that much to keep you covered affordably.   Can't give you too much more guidance than that though as I've always had employer provided insurance (except for a couple years long before I got diagnosed).  I don't know your employment situation, but if you or your husband can get a job at a large employer with full benefits there's often no exclusion for pre-existing conditions, or at most a limitation (usually no more than a year, often as little as 1-3 months) on denial of coverage for pre-existing conditions.   Once you retire (assuming 65+) you qualify for Medicare.  Though that is 8 years away for you, and even when you do get there the so-called Medi-gap policies are a necessity from what I've heard as regular Medicare coverage leaves a heck of a lot to be desired.
    • Hi Everyone,   I am 57 and have not officially been diagnosed with pd.  I saw my primary care doc two years ago because I was concerned about tremor in my right hand and the fact that my handwriting had changed dramatically!  After further evaluation she referred me to neurologist who sent me for MRI to rule things out.  Her evaluation of slowed movements in my right hand, arm swing difference and balance issues in addition to my handwriting and tremors led her to order a DATscan.  I scheduled it and then missed it because of a cancelled airline flight   I have not rescheduled it.  My symptoms have progressed I think.  When I look in the mirror I look different.  My voice has changed.  My neck aches like crazy.  etc etc.  I am insured through Kaiser in Colorado.  We have a very high deductible plan and I would like to get better insurance during this open enrollment period.  I would appreciate any input I can get!  Id like to go to a center of excellence for a complete work up. My husband and I want to be able to live in Arizona for part of the year when we retire ( maybe sooner than I thought!)  We have 16 year old triplets plus 2 older daughters and 4 grandkids.  My life is exhausting but wonderful.  I am praying that I can continue to live fiercely but am really scared about how this will go.   Thanks in advance for the wisdom you all have.  God Bless.
    • You can try it.  I tried that medication but had a bad reaction to it.  I can detail that for you if you'd like.  Point being is any drug will cause bad reactions in certain people, so just be aware of what can happen and be cautious if you do start taking it.     The data supporting the ability of any drug, including rasagiline (aka Azilect), to slow progression is mixed at best.  Same goes for herbal remedies like ashwaghanda and whatever else waruna likes to promote.  However, if you feel better for taking any particular drug or herbal supplement then it might be worth the expense for you.   The only thus far proven to actually help slow progression is exercise.  Unless you're already a competitive athlete in your age class you can probably increase your level of exercise and obtain some benefit.     As far as take it or wait, that's a decision you'll have to base on the cost for the medication vs the potential benefits.  Rasagiline is, last I heard, only available through 1 drug company as a generic, so cash price isn't tremendously lower than brand name Azilect.  Not all insurance plans will cover it.  But Teva (the maker of Azilect brand rasagiline) might have a patient assistance program where, depending on your income level, you might be able to get it at a significant discount, or at no charge at all.  Worth checking into if you decide to go for it.   Personally, and this is just IMHO, and based on my own situation, if I were you I would either decline all drugs, or look into a low dose of carbidopa/levodopa to see if that gives you the relief you want.  For me at least I got excellent motor symptom control from that, and some benefit to non-motor symptoms too.  The latest research is showing that starting that early vs later does not influence if/when you'd start to develop the main bad side effect of dyskinesia.   Meantime I would be talking to my insurance company to see how they cover rasagiline (if they cover it at all), and also calling the drug companies to see what they can do to help cover the cost.  Then, if between insurance and drug company discounts/coupons/assistance, rasagiline is affordable I'd start on a trial of that.    In any case, getting on an exercise program (anything that you will actually stick with is fine - if you don't know where to start look up cardio based programs like running, bicycling, swimming, etc.)
    • noah, you might find this article helpful.  I simply Googled marriage and Parkinson's. https://byrslf.co/what-happens-to-a-marriage-after-parkinsons-5e28f44e2afc Best wishes, Dianne
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