I was your age when diagnosed. Fast forward 10 years, or slow-forward may be more appropriate (see, still have the same dry sense of humor!) and here's the top 10 things I want you and any other newbie to know. (Excuse errors n typos. Keyboarding on my phone at 1am)
1. This can be a slowly progressing disease and by what you've described, yours is slow
2. You are going to get a whole lot better b4 you get worse.
3. They say this disease always gets worse over time. I'm not so sure that's true for all. Even if it is your truth, it's not a straight downhill slide. More like a at stock market that trends lower over time but is down and bAck up again as we work out temporary solutions to symptoms or side effects.
4. Don't think it's best to stall off taking meds as long as you can hold out. After 10 years is taking meds I have never felt as awful as I did when first diagnosed and waiting to start meds while I tried to fix my problems myself with PT, OT, exercise. Get yourself optimally medicated so you can function and move as normally as possible. Getting meds optimal can take a year. It's trial and error to find the right mix for you. Get a good MDS
5. When you are back to your new normal and walking better start exercising that medicated body. Get a good PT and a good fitness trainer. Cardio. Strength. Core stability.
6. Know that if a new problem happens quickly it's either a reaction to meds, something else going on that is feeding the PD fire or something unrelated to PD.
7. PD impacts mood, emotions, thoughts feelings and faith. PD now and fears of PD future impacts all your relationship. Keep en eye out for that.
8. You are not alone. There are forums and online PD privacy protected support groups and real in person support groups. Don't be afraid of what you will see. Just find or start a young onset group. If you want to be invited to an active but unlisted young onset FB support group, message me.
9. Get educated on PD because doctors are guessing what to do. Also your body ailments will get compartmentalized to different doctors and you have to sty in charge of it all. Read stuff online but don't get overwhelmed. You don't get everything.
10. Have hope. To have credible hope for your own future find and stuck with people who have had it way longer than you who are still doing well enough. Till you do, let me be that person. Since I was dx 10 years ago at 48, I left a bad relationship, moved to a new seaside home where I didn't know a soul, started a new career in real estate sales, became the top selling agent in my office, went into a team partnership with my manager, bought, redesigned and rebuilt my oceanfront dream house as my own general contractor, became very active in community PD started a young onset support group-got involved with many PD organizations and attended dozens of programs, conferences, and participated in nervous clinical trials. Retired and have 4 grandchildren in 4 years that I see and babysit on my own, still live on my own, still drive, still strength train and work out 5-6 days s week, and am still lucid, clear headed and care enough about others with PD, and especially newbies to type this post on my itty bitty iPhone!!
- Beau's Mom, christie, Daven and 16 others like this