When I say Parkinson’s Disease what comes to mind? Do you know anyone with Parkinson’s Disease?
Two years ago my dad was diagnosed with early stage Parkinson’s Disease. Although we noticed my dad moved a little slower, thought a little slower and had a slight tremor, we thought all would be fine by seeing a neurologist and starting a medication.
Fast forward a year and my dad has done a total spiral. Our family has been in a whirlwind trying to figure out how to help him. He went from a very active and athletic person to someone who lost pretty much all functions of life. He quickly went from being self-sufficient and independent to nursing care 24-7. He is dealing with weakness, falls, confusion, hallucinations, paranoia, memory loss, and weight loss.
This is all happening during a pandemic and me living in NYC, trying to get back home to help as much as I can. There’s a lot of feeling helpless watching someone you love go through this and not be able to fix it.
After a terrible 5 months of watching my dad go downhill we finally got him into the right hands and this is what I really want to share to hopefully help anyone else going through this with a family member.
PD is not one size fits all. It affects everyone differently. Knowing this, you will understand quicker that your loved one may need a multidisciplinary team to help with the symptoms and progression of PD. I highly recommend getting your loved one to a Movement Disorder specialist, as this is ultimately who should be treating your loved one. It took us 5 months to find ours at the University of IA. As my father regressed and his PD became more complex, his neurologist referred him to a Movement Disorder Specialist (as they specialize in PD).
I’d also suggest connecting with the Michael J Fox foundation. They are an amazing resource – a support system with a wealth of information. In the coming months I will share more of our journey as well as an interview with some of the wonderful people at the Michael J Fox foundation. Most importantly, if you are going through something similar, whether it is your diagnosis or that of a loved one, know you are not alone.