Living with Parkinson's Disease - Meet others & come say hi

Welcome to the Parkinson’s Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson’s or caring for someone with Parkinson’s. Let’s learn from each other and share stories about living well with Parkinson’s, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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@beverlyann

Glad to be of help, Beverly. Please keep in touch with us.

Teresa

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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Looks like we’re not going to be able to use Mayo Clinic. With issues my mom is having besides tremors which she would need a neurologist, GI, possibly IM Doctors. The only one contracted with Medicare is neurologist. That’s too long of a drive to not be able to get all our answers. But I do hear great things about Mayo.

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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@beverlyann

I am sorry to hear that your mom won’t be able to go to Mayo, but I understand your concern about the driving distance, etc. As I recall, you were planning on visiting the Mayo Clinic in Arizona, is that correct?

Are there any university medical schools in your area where your mom could be seen?

Teresa

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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Yes it was AZ. I’m am so surprised to find out they are not in contract with Medicare though!! We have been to the University Medical Center in our area but always the same thing, everything is normal when it’s obviously not. My mom is just ready to give up but we continue to dig to help. Thanks for all your info!

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I am 65 years Indian male national being actively employed for the past 41 years in the field of maritime human resource provider having worked for India’s two leading shipping companies owning fleet of Oil Tankers. Gas Tankers & Bulk Carriers trading worldwide. Presently self employed as a Marine Consultant. I am suffering from Parkinson’s Disease and controlling the same by way of regular daily walk and exercise by way of simple yoga

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Hello @sainath

I’m so pleased that you joined the Parkinson’s discussion and I’m glad that you shared how you are coping with this disorder.

If you are comfortable sharing more about yourself, can you share how long you have been diagnosed and what your major symptoms are?
Are you currently taking any meds in addition to the exercise and yoga?

I’d like to invite some of our other PD members to join me in welcoming you @chrisj2491 @denie57 @ggopher @aperob @knightkris @pjsammy @techi@sandycerem @bobbieingeorgia @gulfer @mojo1965 @brittalisse @ruby7dnj @moso @elizabethbryant @meggotty @ruby7dnj @lsdemspey @oronogo @mariemarie

Teresa

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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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!

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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Beverlyann, just read over again your note. If it was me, I would call Mayo’s in Arizona, and ask to speak to someone who can give you the Mayo trained MDs in your area. Remember I am not a doctor but did have a father whose GI system, tremors were all part of PD.
That’s why we need more treatments that work. Because both PD and Dystonia are neurological movement disorders, it’s common the GI tract is involved. I have Dystonia in 5 different parts of my body, spasms that come and go. My mother had essential being tremor
and father with PD, two movement disorder cells from parents may have resulted in my Dystonia. However, we do not know?

People fly from all over the world to the Mayo Clinic locations, and if they can get help after being diagnosed locally, they do.

Also, if your mother and you do decide to go to Scottsdale, tell the appointment desk you are from out of town and you need
appointments close together. It’s always possible that the Neurologist will see her and diagnose her on the first appointment.
Many friends of mine, then do follow ups at local home MDs.

For 19 years we commuted to Mayo, because we were misdiagnosed by plenty of MDs, we finally moved to Jacksonville for the last 5 years of my husband’s life. We stayed at hotels, and long term hotels. My whole family did this. But, we have no regrets, we had the best care and support we could have ever gotten. But, one has to go and experience it for yourself. Mayo is not perfect, you may have to wait because of an emergency if you are seeing a surgeon, but that is not what you are going to do. Blood work will probably be done ahead of appointment or after and at JAX, it takes about 3-4 hours to have it complete and back to MD.
But, after one knows their system, blood work results may be posted on the patient’s personal electronic portal in 2 hours before the MD even has seen it. Then what I do is call the nurse, and have the MD call me. I will tell them that the results are already posted.
They are busy seeing other patients so they get the message from the lab, but I just might get it first. One would not have any of this
experience, you must remember, I am a third generation patient with 6 people currently seeing Mayo, Jax. If I did not know my Mayo Clinic patient number by heart after 23 years, guess I would feel maybe I had Cognitive Impairment. Sometimes, I forget my social security number. Ha, Ha, Ha! I have an original Rochester Mayo Clinic card that I will always keep. We don’t have them now.
It’s kind of “vintage” and I love it! Good results wherever your dear mother goes, and it sounds as though you are the “Caregiver”
in the family, and that means you need to be educated as best as you can…I will get off and get the correct spelling of the PD Mayo
book now. Thanks for reading all of this…I could write a book on being a Mayo Clinic patient, I have wonderful experiences of all of the kind, compassionate people I have met for my entire family and Uncle’s and Aunt’s that use Rochester from Fargo, N.D.

You have all my support and faith in you for the best outcome for your mother and family.

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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@AgentDarien

I appreciate your encouraging words about Mayo and their help to your family!

Teresa

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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Hi again! Correct spelling of the PD book is Dr. Eric Ahlskog. There are about 4 foundations, organizations listed on google for you.
Also, under news it tells how Mayo/Banner in Arizona is working together. Michael J. Fox, was suffers thru PD plus Dystonia, but Dystonia is not mentioned very much it is a fact. Break thru have been made in diagnosing PD early, clinical trial are going on.
Fox’s Foundation on google states it is the biggest funder for PD. Dystonia has even received grants from Michael J. Fox Foundation.

Berverlyann, it’s hard when you are a “caregiver” to have the time to look up all this help, is it possible to have someone else do research on movement disorders,,,there are so many different ones, but Banner teaming up with Mayo would be a great solution because they are working together on PD in Arizona and you may find out there is a local center close to you.

But, a PCP, is not one for a Movement Disorder diagnosis, PCP may guess at it, but since os the vast kinds, neurologists are best time spent. Lots of friends of mine who were exposed to Agent Orange Viet Nam when they were in the service, has PD and Veterans
Affairs have now it listed for possible outcomes. We also, are connected with Military Traumatic Brain Injuries and subsequent
Dystonia, so we are listed under the Department of Defense has a disease that gets to compete with other disease for amount of funding for research…we have no cure, either. Beverlyann, we have lots in common! Wishing you well and HOPE!

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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@AgentDarien I appreciate all of the good resources you have provided.

Teresa

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Hello. I was diagnosed with PD nearly 4 years ago. My particular symptoms are focused mostly on my feet and legs…frozen to the ground, gate, and neuropathy in my feet. Also included are the general issues related to swallowing, balance, insomnia and constipation.

I recently heard about CDB Oils and am wondering what this group thinks about it and which of the 50-state legal forms are best.

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Hello @johnmauney and welcome to Mayo Connect. I am Teresa, mentor for the PD discussion group and I’m glad that you joined our conversation.

I see that you are looking for information on CDB Oils. I have no personal information about that, I have only used the traditional meds that are used to treat PD along with regular exercise, physical therapy, etc. Many of our Members in this group have used Pedaling for Parkinson’s Progam, it is done on a stationary bike and is very helpful for many of the symptoms you have mentioned. I’m going to tag @mariemarie who has used the Pedaling program for some time. She will probably explain the benefits.

I notice that you mention swallowing problems. Have you had any speech therapy? That was especially helpful to me for swallowing problems. I usually go for speech therapy about once per year to tune-up the swallowing process. Here is one of the discussions on swallowing and PD, https://connect.mayoclinic.org/discussion/parkinsons-and-speechswallowing-problems/.

Regarding some of the problems with balance, freezing, etc, have you tried regular exercise and physical therapy? They are generally very helpful. I’m going to tag @ggopher who exercises regularly as well.

Regarding problems with insomnia, here is a video from a University of Michigan seminar on PD that deals specifically with insomnia,

Freezing is a very real problem with Parkinson’s. Here are some links to articles that you might find interesting as well as helpful. The first one is from the National Parkinson’s Foundation http://www.parkinson.org/understanding-parkinsons/living-well/freezing. This next article is from the Michael J. Fox Foundation https://www.michaeljfox.org/foundation/news-detail.php?tricks-to-move-through-freezing-episodes-in-parkinson-disease.

If you are comfortable sharing, could you tell what meds you are currently taking? In what way are they working (or not) for you?

I look forward to hearing from you again.

Teresa

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Hello
I am caring for my husband who was diagnosed with PD 8 months ago; his initial symptom was a profound and severe insomnia–that went on for many months!!!
It’s difficult for me to tell this story
Prior to this illness he (and I) led an extremely active lifestyle; we were into avid cycling (both road and mountain) among other sports.
After a long and painful journey in and out of Psychiatry ( MDs were insistent he was having a bipolar illness) we finally were able to see a neurologist and obtain the diagnosis of PD
As of this writing my husband is so overwhelmed with anxiety he can barely get through his day!
We take walks 3-4 times a day ; do other exercises and attend a dance class on the weekends but he and I will tell you he is a shadow of his former self
We both feel since he has started taking these meds his anxiety has increased to the point of craziness
His MDs keep asking us to increase his meds (carbidopa/levodopa and pramipexole) but we both feel these are contributing to his anxiety — as he is not feeling any relief since he has started them (he started the pramipexole initially several months ago, then the carbidopa/levodopa was added last month.
He tried taking other meds for anxiety but we found them not to be helpful
Prior to this illness he was not an anxious person at all!
To confound this he is now not sleeping very well; of course we are trying to keep the balance of healthy living/mindfulness/low stress/good support all in play here
We are both 62 years old; we live in Northern California

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@melmaury

Hello
I am caring for my husband who was diagnosed with PD 8 months ago; his initial symptom was a profound and severe insomnia–that went on for many months!!!
It’s difficult for me to tell this story
Prior to this illness he (and I) led an extremely active lifestyle; we were into avid cycling (both road and mountain) among other sports.
After a long and painful journey in and out of Psychiatry ( MDs were insistent he was having a bipolar illness) we finally were able to see a neurologist and obtain the diagnosis of PD
As of this writing my husband is so overwhelmed with anxiety he can barely get through his day!
We take walks 3-4 times a day ; do other exercises and attend a dance class on the weekends but he and I will tell you he is a shadow of his former self
We both feel since he has started taking these meds his anxiety has increased to the point of craziness
His MDs keep asking us to increase his meds (carbidopa/levodopa and pramipexole) but we both feel these are contributing to his anxiety — as he is not feeling any relief since he has started them (he started the pramipexole initially several months ago, then the carbidopa/levodopa was added last month.
He tried taking other meds for anxiety but we found them not to be helpful
Prior to this illness he was not an anxious person at all!
To confound this he is now not sleeping very well; of course we are trying to keep the balance of healthy living/mindfulness/low stress/good support all in play here
We are both 62 years old; we live in Northern California

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PLEASE REMOVE ME FROM THE LIST.  MY HUSBAND DIED LAST WEEK FROM PARKINSONS COMPLICATIONS.  

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