Welcome. My mom was diagnosed at 62 in 2010. She was mostly taking care of my dad who had severe PTSD from Vietnam, diabetes, heart issues, etc., and rated 100% disabled through the VA although he could still physically get around pretty well until his last year in 2022. I was an only child and son, so I moved back with them at 36 when mom was diagnosed with PD in 2010 (dad couldn't handle taking care of her, and she couldn't handle watching out for him anymore...so I took care of both of them). I'm 52 now. Mom will be 78 next month, and I'll be finishing my 17th year of caregiving next month also. I'm a high school teacher, and since dad passed mom has needed a caregiver during the day when I'm at work. Luckily between her social security and pension, and dad's pensions and VA Dependency and Indemnity benefits, it's enough to pay for 6 hours a day weekdays, with a tiny bit left over. I pay for everything else (as I have done for many years anyway), and the family house finally got paid off shortly after dad passed. I don't know how I'm holding everything together, but it could be so much worse.
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We've been through quite a lot with the disease, including DBS in 2021 (which improved her quite a lot, although it wasn't perfect), and the Vyalev pump last year (which ultimately didn't work for her after 5 months of trying). We also tried the Rytary from '24 to '25, but its effectiveness was not what I'd hoped. Now we're back to the carbidopa/levodopa, about every hour and 35 minutes during the day, a bit of entacapone, and the 50/200 controlled release CL at 11pm and 3:30am. Her neuro wants us to try the Onapgo pump at some point, but the Vyalev failure really had me flirting with exhaustion. I cancelled her summer appointment a couple weeks ago (it's 3 hours away and was at 8am since that was all that was available, and it was just too much this time for both of us). We already had an October appointment scheduled anyway, and she's doing ok. I'm feeling a little guilty about it, but the last 5 years have really been nonstop for me.
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