If your husband is 66 years of age now and has had Parkinson's Disease for 20 years he would have been 46 yo when he was diagnosed with Parkinson's Disease. He would be considered to have Young Onset Parkinson's Disease (YOPD). One is considered to have YOPD if they are diagnosed at the age of 55 or younger and regular Parkinson's Disease (PD) if diagnosed after the age of 55. I was diagnosed in 2010 at the age of 48. I doctored in a nearby city for the first 11 years that I had Parkinson's. At this point my medications weren't working real well anymore and I was having some side effects that I did not like. I decided to try get into neurology at Mayo Rochester to see if they had anything different to offer me. I am fortunate that I live only 4 hours from Rochester. I had to wait about 3 months for an appointment at Mayo Rochester. I feel that this was fast, considering my need to see them was not emergent. I don't know if you are aware that they are thinking that YOPD and Parkinson's Disease may be two different diseases. I see a neurologist by the name of Dr. Savica at Mayo Rochester. He specializes in Parkinson's Disease, but more specifically in YOPD. He is known world wide for his dedication to and research in YOPD. I did not know until I went to Mayo that there even was something called Young Onset Parkinson's Disease. I had a complete workup at Mayo. I stayed on some of the medications that I was taking and was started on some new medications. I see either him or a Nurse Practitioner that he works with every 6 months. Scheduling makes sure that if my appointment is with the NP, Dr. Savica is in clinic that day. They do that in case their are questions that only he can answer. I have some of my appointments via "Zoom" on the computer. They have been very willing for me to do most of my appointments this way so that I don't have to travel to Rochester every 6 months.

I think that your husband, being so young and having such severe symptoms, may benefit from seeing a Neurologist that specializes in YOPD. I do not know if you can request a specific doctor, but if you tell them that you have Young Onset Parkinson's Disease it may help you to get scheduled with a YOPD specialist. I do not know anything about the Mayo in Arizona, so I can not give you any advice regarding who to see there. I do understand how tiring it can be when you are the caregiver and have to do pretty much everything. I am lucky that I have a husband that is so understanding and my symptoms are not nearly as severe as your husband's. I like the advice that someone gave you about finding a helper that could stay with you and help with his cares when you are traveling.

I hope you find a good path for you and your husband. I feel for all that you are going through.
Take care!