I have been a Mayo Jacksonville patient for 24 years. Jacksonville is “not in Contract” with Medicare anymore. For years they were but because they are a diagnostic specialized medicine center, they are Federally permitted to charge a very small percentage to patients personally that we are responsible for ourselves.
I am on Medicare A/B plus plan F of supplement. The percentage I personally am responsible for legally is very small. There is no way I would ever let that small amount of money get in the way of using the Mayo Clinic. Depending on your disease and department, Mayo may just be the best in the world. Health is the best investment there is I feel.
Parkinson’s Disease is one of Mayo’s diseases they are dedicated and recognized for their contribution to the world. I see that department of Movement Disorders in Jacksonville because I have Dystonia. Many PD patients have PD plus Dystonia. Rochester’s campus is also recognized as a PD Center. As far as I am concerned the best book on PD for patients was written by Dr. Askog…sorry may have a couple of letters wrong in his name.
Jacksonville’s campus has specialized neurologists, researchers, as well as monthly support groups on campus. We also have had PD Symposiums often held on campus. Of course, we also have a Movement Disorders Brain Bank, and lots of clinical trials going on there. Mayo also collaborates with all the medical centers all over the world.
In the last years, with all three locations counted, our NIH has funded Mayo Clinic more than any other Medical Center. Not up to date on current numbers of 2017 but I believe it remains the same. My understanding of that fact has to do with our researchers are applying for funding and granted the funding because of their expertise and results.
Five months ago I moved to Washington, D.C. and I continue to be a Mayo Clinic Patient and plan to remain that way for the rest of my life. I have established a Primary Care Physician in D.C. who is with the John Hopkins System and I like the internist and we have discussed her applying to Mayo Clinic, Jacksonville because her sister who is also a MD in NYC wants to move to a warmer climate also. So they both will apply for different departments and I hope they are accepted so they may live in the same city and work at Mayo.
Think I have written this before on Connect, I am a third generation Mayo Clinic patient in my family. There are many exceptional medical centers all over the world, and many Mayo trained MD’s working all over the world, the only reason I ended up using the John Hopkins System here is because of it’s location, two blocks from my apartment. But, if I wanted to travel to the suburbs of DC, there were many Mayo trained MD’s available. Two blocks and easy access to get appointments made a difference to me. Plus, it is John Hopkins! Mayo and John Hopkins are tops in the world!
Plus, they all know each other. Belong to the same professional organizations, go to the same cutting edge research summits.
I in fact have been able to go to NIH Summits as a patient. It’s all available to us if we do our research on the disease.
The National Institutes of Health as USA citizens we are paying for in our taxes. We are so fortunate and I am so grateful to
have what is called a rare disease, or “orphan” disease that was diagnosed by the Mayo Clinic early on.
Please don’t give up, there is help, if one does not want or cannot use Mayo, please go to their support groups for Movement Disorders that are free to the public.
Our specialists give very informative education we need to be the best we can be there… I am on the mailing list of Jacksonville’s PD Support Group so every month I see who and what is planned for the meeting. Also, included we are sent information necessary to be included in Clinical Trials, and other exercise programs and support groups in the area.
I actually have a friend from college who’s wife came down with early onset PD in her 40’s in Tucson, Arizona.
Even though I suggested they see Mayo in Scottsdale to see if they had any other ideas for her health care, they stayed with their system in Tucson.
Whatever, going to get second opinions from other medical systems one always learns something. Going to the John Hopkins
PCP, I have learned a different view point on another issue I have. One learns from all, and the more engaged one is the healthier
I see people get.
Every year when we as a group from all over the USA, Advocate to our Congressional leaders, I see advocates that I have known for years that are getting better and better. Also, I learn so much from them. Please don’t give up, there is HELP!
Become an Advocate for PD…you will find out all the best MDs others are using, medicines, and other treatment programs.
We need as many advocates as possible to call on the decisions makers in DC and their local offices to have research done on a disease we do not have a cure for…My father had PD and my brother has Frontal Temporal Dementia that basically amounts to
Parkinson’s plus no mental judgment…it’s now considered to be the worst type of dementia there is. He has had it since he was about 65 but not diagnosed until 3 years ago…result is his health care surrogate is not involved with the disease, his judgement is not there
so we are more or less unable to get him the best care. When he says no, it’s NO. I am helpless to help him because his judgement ws already off, when he legally made his estranged wife the decision maker…please get the best help for your beloved you can and make sure one is chosen as a health care surrogate that will do a good job…yes, it is so much time and energy, overwhelming, but one will be overwhelmed if nothing is done. You can do it! You would not be on Connect if you were not totally dedicated.
The only reason, I am not on Connect now, is that I have an eye problem that is made worse by all technology. Computers, cell phones when I text, etc. I have to put my eyesight first. There’s HOPE! Plus, you do not want to regret not doing it while one is able.
Blessings to Arizona from DC!