Mayo Clinic For Parkinson’s

Posted by booplagirl3 @booplagirl3, Jun 17 9:36am

My sister diagnosed with Parkinson’s. It took us almost 3 years to get a proper diagnosis . We live in NJ and have found a Neurologist who will be treating her here …. She is 61 years old . I’m questioning if I should take her to the Mayo Clinic and asked his opinion and he said what are you hoping g to gain from it ??? I don’t know . Something more than watching her get worse and take dopamine? Is it worth it . What gave been peoples experience?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Lisa Lucier, Moderator | @lisalucier | Jun 20 5:55pm

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ethel2017 | @ethel2017 | Jun 22 9:48am

In reply to @booplagirl3 "My First Name Is Grace Thank You Again" + (show)

It is in the mail Grace. I mailed it with just your address since I didn’t have your name yet. I think you should still get it ok. If you have any questions let me know. Thanks, Rhonda

jflamini | @jflamini | Jun 22 4:49pm

I am sure Mayo would be an excellent resource but you may want to consider a similar team closer to home. We live in southern New Jersey and receive great care from the movement disorder team at the University of Pennsylvania in Philadelphia. My wife was diagnosed 15 years ago and I was diagnosed 3 years ago. I was a hospital administrator for 30 years and worked for the board of medical examiners for ten years so have some experience with physicians.

Best wishes, Joe

booplagirl3 | @booplagirl3 | Jun 23 6:57am

In reply to @lisalucier "Just a brief reminder of this community guideline, which is intended to protect you as you..." + (show)

SORRY , Im Guilty But Someone Was Being Kind To Send me Information

booplagirl3 | @booplagirl3 | Jun 23 6:59am

In reply to @ethel2017 "It is in the mail Grace. I mailed it with just your address since I didn’t..." + (show)

Rhonda ,
Thank You So Much. This Is Very Kind Of You . This Has Been A Very Hard Time For Us So Its So Appreciated It .

Grace

booplagirl3 | @booplagirl3 | Jun 23 7:11am

In reply to @jflamini "I am sure Mayo would be an excellent resource but you may want to consider a..." + (show)

I Wish I Had A Good Experience In Our Area Of NJ But We Didnt . The Original Neurologist After A Year Told Us " I Think You Have Parkinson " And To Get A Appointment At Columbia NY Which We Waited Almost A Year To Get In. I Did Not Think Other Then Giving Medicine (That Didn't Work) That It Was That Impressive So I'm Hoping At the Mayo Clinic They Will Look At Her As a Whole. Just The Fact That She Will Be There 7 To 10 Days Makes Me Feel Good And I Will Know I Did Everything. Thank You For Sharing Your Experience as All This Is So Helpful. Im Just Praying This Isnt A A Typical Form Of Parkinsons Which They Said It Could Be . Philadelphia Is Not Too Far So I Will Be Asking Them Where They Think We Should Go Once Back Home As Theres Really No Movement Disorder Drs Close To Our Area Which Is Surprising but Im Planning On Going to A Local Support Group to See Who Everyone There Is Going Too. Thank You Again and Wishing You Both the Best.
Sincerely,
Grace

jflamini | @jflamini | Jun 23 7:59pm

My wife was originally diagnosed at Columbia but we were not satisfied with the care and switched to PENN. You make a good point, a comprehensive 7 to 10 day assessment at Mayo should yield good information and then you can connect more locally for ongoing care. Feel free to let me know if I can be of further assistance. We have a friend with PD in the Fort Lee, NJ area who gets good care in case that region is helpful.

Best wishes, Joe

davejr | @davejr | Jun 24 8:41pm

In reply to @booplagirl3 "My sister is struggling taking dopamine as she believes it makes her worse . 2 Drs..." + (show)

I got a diagnosis of PD last Jan. at Mayo Rochester. I can't take some drugs because I have a pacemaker and afib. They put me on carbidopa/levodopa (brand name Sinemet) starting at 1/2 pill three times a day and told me to increase the doses by 1/2 pill for as long as I could tolerate it. I got to 2 pills three times a day and had nausea and threw up, so backed down to 1 1/2 pills three times a day. I stopped falling and my tremors have reduced, although they returned a bit when I dropped my max dosage. The senior staff person at Rochester is of the stature that people almost genuflect whenever his name is mentioned. If you have the time and good insurance, I would say it's well worth the trip. But be patient: I went to be seen for Alzheimer's which I also have and it took about 7 months to get an appointment scheduled. There are too few neurologists in this country and the world comes to Mayo. Best of luck.

joeynolegs | @joeynolegs | Jul 4 10:05pm

There is no clinical diagnosis for Parkinson’s. I had a DAT scan. That’s as close as you can get to a test, but even then they have to go from symptoms. It’s fuzzy logic.

joeynolegs | @joeynolegs | Jul 5 8:11am

In reply to @booplagirl3 "Anyone who went to the Mayo Clinic from another state for Parkinson’s. Please tell me your..." + (show)

I live out of state but see a doctor at the Mayo Scottsdale for PD. If you can afford the round trip air it’s worth it. Mayo is very well organized. I never stay overnight. The only downside is they are hugely popular and get booked up far in advance. But PD is not a 5 alarm fire disease. More like a creeping vine disease. So the onus of treatment is really on you. Through self care and PT. Meds. You can see your doctor occasionally and get PT for PD issues but it’s up to you to put it into daily practice. The reason I went to Mayo out of state is because I live in a major city and their services for PD suck. I don’t think the disease is a big money maker for doctors so you’re not gonna see widespread treatment centers for it. Just my opinion. Like my local neurologist, says “nobody dies from PD“. Having said that the best experts seem to be at Mayo for PD.