Advice for newly diagnosed people with Parkinson's
Receiving a Parkinson's disease diagnosis can bring a flood of questions and emotions. For those who are years into your diagnosis, what tips or advice do you have for those who are newly diagnosed?
As a daughter of someone who has had PD and now dementia for over 10 years, I would suggest having a supportive team of friends and/ or family to be by your side when you are going thru testing. If you are diagnosed with PD, then you need a team of health professionals to guide you along the way. A social worker is one of my top tips as we didn't know what to expect in the future. This person can be a guiding light on the neurology team that sometimes are more at the medical level rather than daily life routines etc.
Best regards, Suzanne Troy, ParkinsonsDisease.net team member
, Thank you for your comment. I would consider speaking to your movement disorder neurologist concerning your self-titrating of taking additional Levodopa without discussing it first with your MD. There are some contraindications with self-adjusting the medication. Marc M. Moderator, parkinsonsdisease.net thank you but I must have written it poorly ! My Neurologist titrated me very slowly upward so I presume my system could adjust and I haven’t had any dyskinesia even though I’m on 1200mg a day of LD
Don’t read a lot of material all at once about PD. It is too depressing. I finally limited myself to 30-60 minutes a day.
PD information can be depressing. Some PwP need to have as much information as possible, donna-k, some don't. However, getting the correct information is very important, especially if you are researching on the internet. Use only reliable information from research institutions, Michael J. Fox, etc. There is a lot of misinformation out there. Be careful! Marc M., Moderator, ParkinsonsDisease.Net
Blessings on your day Donna-K! Hope you are finding joy in the Christmas season.
Hugs, Suzanne - team member
I did not suggest people new to PD NOT get information; I suggested they titrate it to the level of sadness or anxiety it was creating within them. Stop for that day and then go back the next day and read more, again until they started feeling overwhelmed.
My advice would be three-fold. 1. Breathe and take whatever time you need to adjust to this “new” you. This phase may include telling others and starting meds. 2. See a movement disorder specialist (neurologist with additional training) if possible. 3. Find others near you who have Parkinson’s and build a healthy support unit. ~Lorraine, parkinsonsdisease.net moderator
I agree with your comments, Lorraine. A movement disorder specialist should be the gatekeeper in PwP care. Best, Marc M., ParkinsonsDisease.Net, fellow Moderator , I agree with you, Lorraine. Part of my team is physical, occupational, and speech pathologists, even if you feel that you don't need them right now. They can teach you exercises for safety and slow down the effects of PD. Best, Marc M., Moderator, parkinsonsdisease.net
