What I wish I had known... being first diagnosed with PD

It was December 20, 2016.  It was like a bomb went off close by, so I couldn't hear anything for awhile.  My neurologist had made sure it wasn't MS/stroke/Lyme/vitamin deficiency and a host of other things that look like Parkinson's, but aren't.  I was pretty sure he was going to say I had PD - after all, my mom and her brother both had it, and I knew something was very wrong.

But hearing the diagnosis confirmed...  I didn't hear anything for awhile.  Fortunately, my husband and daughter were both there to listen.

I read a lot then, but not everything soaked in, because in the background my mind was shouting, OMG OMG OMG OMG OMG...

What I wish I had known immediately, because it would have helped me focus on living (and might have helped my family, too):

Exercise is critical - not only will it help you feel better, but if vigorous enough, it seems to slow progression and improve symptoms.  Fortunately, I already had an exercise habit at dx (diagnosis). For more.

Find other pwp.  They provide support, they understand, and they have resources.  Support group, online forums, PD exercise group - all places to find your new peers.  Set aside your assumptions about age, or gender.  You have a lot in common.

Watch out for snake oil as well as for the over-enthusiastic press.  There are people who want to make a buck out of your worry.  See here   and here  and here  and here and here.  And the press will report that there is a cure  - but it turns out the hopeful results were in ...  mice.  It's important to find valid sources for information - talk show hosts, internet advertisements, and your brother-in-law's cousin's buddy are not it.  I heartily recommend The Science of Parkinson's.

Alternative / complementary medicine has not been found to cure PD, but it can help make you more comfortable. So.  Why.  Not?

Find a movement disorder specialist - a neurologist who has extra training and experience with PD.  You may see your primary care doctor or your neurologist more often, but a MDS can make a huge difference in diagnosis and care.  And be sure you can phone/email/patient portal when you have questions or concerns; getting your medications/dosage right or dealing with an alarming new symptom are not matters to wait for the next appointment in weeks or months.  In the US, you can use https://parkinson.org/Living-with-Parkinsons/in-your-area.  Or email your location to info@movementdisorders.org.

Be proactive.  I am not sorry that I found a good physical therapist who is experienced with PD.  Or that I found a good speech therapist.  And saw them when my problems were minor. Specialists like these can really help you now - don't wait until you can't get out of a chair, or you can't swallow or your voice is so quiet that nobody can hear you.  They can give you exercises that will help you stay on top of symptoms before they get overwhelming.  (I remember to do all those exercises by pairing them with an activity - like feeding the dog, or being in the car - that reminds me to do them.)

Read Every Victory Counts, published by the Davis Phinney Foundation.  This includes the voices of pwp and their families, addresses complementary therapies, as well as more mainstream therapies.  It is focused on living your best life now, and is much more helpful than many of the conventional books written by physicians. Available for free download and sometimes also in paper - free.

Recognize that this may be as hard for your family to grasp as it has been for you.  Some will be in denial, telling you that It's all in your head.  Sometimes because they don't deal with illness well.  Sometimes because this shifts your roles - maybe you were the caregiver and that can't be any more.  Some will have opinions about your choices for treatment, forgetting that these are your choices. While they are adjusting, being with other pwp is very helpful. Take family to a support group, too.

Live in the present, but plan for the future.  Grab bars in the bathroom.  Living will and other legal papers.  Investigate the care you might need down the road. My mom needed, eventually, 24 hour care, because she could not stand or walk; not everybody reaches that point, but you may have to deal with it.  And don't assume that your spouse can do everything - because even a few hours of physical care can be exhausting to provide.

If you're inclined to participate in finding better therapies, then explore being part of a clinical trial - a scientific study to find out more about possible PD treatments.

Focus on what you CAN do.  At the start, PD will remind you of what's hard to do, and you will have this loud volume reminder (OMG I have PD), but if you are wise, in time you just move on to what IS.  This is not passive resignation, it is facing reality but living your best life anyway.  Michael J. Fox provides a great example of this (but so do many, many others).

This one is hard:  accept help.  And even harder:  ask for help.  Getting my cane was a revelation; so many strangers held doors for me. I don't always need it, but that handicapped parking sticker is a Godsend when I do.  Exhaustion does not make PD better.  People really do like to help.