Mayo Clinic after 20 years with Parkinson’s Disease?

I want to say first"Happy Anniversary". Texas is a long way to travel. Which Mayo location were you thinking of? It sounds like alot to do with all the issues that your spouse is going through. I will say you are awesome! You both have been through alot. My spouse was diagnosed in 2018. It has been every emotion you can imagine. My father had Parkinson's and my brother has it. Actually he is in hospice. He is 67 yo. My spouse has other health issues as well. Enough about us. Have you thought about face timing the physician and maybe that will be enough for your husband! Please know my heart goes out to you. Hugs !

Hello @vicwilbanks and welcome to the Parkinson's support group on Mayo Connect. I can certainly appreciate the dilemma that you are facing. It sounds like the past 20 years have been difficult for him. I really admire his wanting a second opinion.

Are you aware that there is a Mayo Clinic in Phoenix, AZ? As you live in Texas this location might be closer for you and not involve as much traveling. I can see, however, some of the problems you are personally facing, as he is in a wheelchair, and has only has 50% weight bearing. That would put a lot of physical responsibility on you.

Have you considered a travel companion? Perhaps a family member who might be able to help you with the transportation issues. If you don't have a family member to assist, perhaps there is an agency in your community who could recommend an individual who could travel and accompany you for payment.

After two DBS treatments, he has really given his best efforts in seeking help. Did the DBS procedures offer much symptom relief? Are the swallowing/bladder/bowels problems the most difficult symptoms that he is facing?

That’s a good idea. I had not thought of that. Thanks.

Good morning! You are quite welcome. It may not fix the problem..but at least you tried. Have you thought of face timing a counseler or someone else you trust? Please know I totally get it..more then you know.

At 66 yrs old he probably feels too young to except his situation. My husband is 80 , had Parkinson about 8 years. Only affects his walking and now his voice , tremors in one hand . I relate because my husband doesn’t realize, that I’m the one who does all the leg work. It’s a hard decision, I would go because different medical Centers have different procedures and treatments. My husband is. VET and VA. In our area was useless. Travel 2 hours and VA has an excellent Neurology department. Meet people that said going to a different hospital, and DR. Improved there lives greatly.
One man who could not feed himself due tremors , now he has no tremors. So pray about it, but remember to consider the impact on your health and life .

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!

Thanks for the info about that doctor at Rochester. We are aware of YOPD but didn’t know there are specialist for that population.