This month we asked our Members to share the "Things I wish I knew". Whether it's a doctor, a resource, or an experience you wish you had known about sooner - your stories help others in the community. 

Here are some of the responses: 

Seriously rethink your investment strategy. There is a 10% penalty for early withdrawal of IRA/401(k) funds unless you are disabled according to the federal government, which is a difficult standard to meet. You may be disabled enough to not be able to perform your usual and customary job, but that's not the standard. Even if you are disabled according to their standards, it can be a very slow process and you will need cash to bridge the gap. Like two years worth of living expenses. I wish I had stopped putting money in tax-deferred investment vehicles earlier and switched to money market accounts or high yield savings accounts or other short-term investments that would allow me to access my own money without penalty. Related: find a financial planner who is comfortable discussing disability and "early retirement". I have found that most are not equipped to deal with the curveball of YOPD. They keep wanting to treat me like a traditional client with a normal lifespan and a normal age of/path to retirement.

I wish I could have told my future self that I would figure out how to live fully with this disease even with so many unknowns about how I was going to progress.

Nothing. I knew there would be no financial, medical, legal, or legislative support. I was right.

Postponing an official diagnosis is tempting but not helpful because you can waste valuable time when you could have been implementing helpful strategies like additional exercise, supplements, and so on.

To get my finances right. Life insurance, Retirement, 401 plans, savings accounts etc. When you don’t expect to stop working at a young age you don’t think about these things as much. I wish I would have saved more and put more money into these types of accounts for mine ands my family’s future.

I wish I would have waited a bit longer to start medications and DBS. I feel as though I rushed into things hoping for a miracle.

I would have gone straight to a Parkinson’s Center of Excellence for my diagnosis and initial treatment, instead of my local health system. I eventually made it into the Center of Excellence and both the care and caring attitude of the team has been superb.

I wish I had known about the overlap between menopause symptoms and YOPD and I wish the physical therapist treating me for frozen shoulder (common early menopause and common early PD symptom) had recognized the lingering weakness and stiffness in my arm was being caused by PD - I could have caught my diagnosis nearly a year earlier.

I wish I had prioritized my physical health more, even before my PD diagnosis. As a working mom, it was easy to justify the needs of others (family/job) before my own. Nothing like a PD diagnosis to force a reframing of priorities and committing to putting my health first to make sure I'm as healthy as possible for myself and my family!

There are so many things I wish I had known earlier. I think what would help me the most would be the assurance that I can still live a great life with this disease.

Early on, I was afraid of the answers, so I didn't ask the questions. I didn't pursue a diagnosis as vigilantly as I could have, trying to keep my head in the sand for as long as possible. I knew I was sick and getting worse as the years passed. Other health problems arose and I became completely incapacitated before I turned 40 years old. I made much of my early adult life sicker than I needed to be, going undiagnosed and unmedicated for 20 years.

During my diagnosis process, I was convinced life was over. No career, no college, no driving, no social life, no goals. I was certain I was doomed to a slow slide into a dark and meaningless existence.

What I know now is that this disease has revealed my most authentic self. I live as truthfully as I can, I speak from the heart and have no guilt over taking care of myself first. Some of what I thought was over was accurate, but what has taken their place is unpredictabily rewarding and incredible. 

Wish I had known what a movement disorders specialist was as opposed to a basic neurologist. I was given a dopamine agonist for my early tremors and had a very bad reaction. I proved to be very sensitive to medications. Finally found the right Neurologist / movement disorders specialist who prescribed an altogether different medication with very slow incremental increase that worked.

Yes, I wish I had known more about different doctors. Several we tried were not that good despite having been trained at prestigious hospitals etc.

I wish it had been possible to have a team of specialists coming together to work with my son. In Arizona for example, at the Mohammed Ali Center that is how things are done. (I know about that from webinars (ZOOM sessions) with PMDAlliance which is headquartered there. I spent a huge amount of time trying to keep my son's doctors and specialists informed. For example, when my son was hospitalized, his PCP did not even come there to see him. I found only 1 movement disorders specialist who actually saw patients in the hospital. I was able to get him to agree to take him as outpatient which worked really well until the doctor retired.

My journey to diagnosis took 14 years.  I was told by multiple neurologists to go away.  How could a young man who played basketball and soccer have a progressive neurodegenerative disease?  The doctors were baffled, but deep down I knew something was not right.  In 2022,  I had enough and finally whatever was happening to me needed care.  I took a DatScan and was told on the patient portal while I was teaching that I had Parkinson's disease.  Finally, I had an answer and thankfully medicines that worked.  I wish I knew how much a person with PD can improve with proper medical care.  I went being constantly off balance and weak to coming in 8th in a 5k race.  That's 8 out of 500 runners.  I could grab the ten foot rim while playing basketball.  I could skateboard again.  Sounds remarkable, right?  I wish I knew that when I read the message in the patient portal and the world felt like it was conspiring against me. 

I wish I had started carbidopa levodopa on day one. My main issues are tremor in my right hand, and bradykinesia and some akinesia in my right hand, and a bit in the arm.

I started CL around three weeks ago. This is after about thirteen months after my diagnosis. I waited partially because I didn't fully mentally debunk the myth that starting CL early causes dyskinesia earlier, even though they say that's officially debunked. I was also overly afraid of "immediate" side effects. I haven't had any side effects after taking the CL. I also haven't had any benefits, and I realize that finding the right medication is a process.

After that lack of response, I realized that there's no point in waiting because there's no guarantee the dose and medication you're first prescribed will work. Something will almost certainly work! Don't get me wrong. But it may take time, so you're better off starting right away.

Also, if you do end up having side effects, it's better to know that straight away, so that you and your doc can try to figure it out. The way I did it, I waited on taking CL until my bradykinesia made my typing quite hard, and my hand started going into a tremor when I do certain tasks, and I started having some more tremor frequency throughout the day (versus day one of my diagnosis).

I assumed when I started taking CL that the bradykinesia would go away, and maybe the tremors. But neither has yet, so now this is sort of "lost time" with slightly more advanced symptoms that are having a mild, yet annoying effect on my quality of life. Whereas if I'd started CL 13 months ago, I probably would have at least the bradykinesia more under control, and maybe the tremors too.

The worst part is that I did all of this knowing that not everyone has an immediate response to CL. So I even ignored the wisdom and advice of the PD community, in favour of my flimsy excuses. So definitely don't do that.

Good luck!