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oronogo
@oronogo

Posts: 7
Joined: Dec 13, 2017

Newly diagnosed with Parkinson

Posted by @oronogo, Mon, Jan 1 10:18pm

I’m newly diagnosed with Parkinson, and waiting to get accepted by Mayo Clinic for a second opinion. I am a current heart patient at Mayo’s so hoping they will accept me. Has anyone else been accepted by Mayo? I am having tremors in right hand, I was not told locally what stage it is. The doctor wanted to start medication, but I wanted a second opinion first. I’m 75 year old female. I have been having some deep tissue messages that I have found helpful. I had a brain and neck MRI done locally. Thanks for any help you might have.

REPLY

Hello, @oronogo, and welcome to Mayo Connect!

I am sorry to hear that a Parkinson’s (PD) diagnosis (DX) is what brought you to us, but there are many of us who have a PD DX and we know how difficult it is to accept and deal with. I am glad that you are getting a second opinion at Mayo. We strongly believe in second opinions. There might be those in our group who have been to Mayo Clinic and perhaps they will respond to your post with their experiences soon. As you know, Mayo Connect is an online community and we are from all over the country (and world).

You mentioned that your diagnosis came about with tremors in your hands. Have you had other symptoms such as balance problems, unsteadiness of gait, stiffness, drooling, etc.?

Here are some links to basic information about PD, https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055 and http://www.parkinson.org/. As you read them, you will find valuable information in understanding PD’s symptoms and treatments.

All of us in the PD discussion group look forward to getting to know you, I would like to invite some other members into this conversation, @ggopher and @mariemarie. I’m sure that they will join me in welcoming you to our group.

Teresa

Welcome! I got second opinion at Mayo Jacksonville February 2017. My local neurologist suggested i go to Mayo. I saw a movement neurologist. He dx me with mild Parkinson Syndrome. He strongly emphasized vigorous exercise. He said i did not need meds but said if stiffness occurs to go on sinemet. Few weeks ago went on sinemet due to stiff ham strings. I tried sinemet but had stomach issues. Stopped sinemet per neurologist . He put me on neupro patch. This is day 14 on patch. So far so good. I take pedaling for Parkinson 3 x week. I tried boxing but wasnt for me. Exercise is so important. I also have stationary bike at home. Hope this helps.
Marie

I was DX with PD August 2017 by local neurologist (although I have been able to track my symptoms back for about two years). She encouraged me to get a second opinion and set an appointment with Emory. After the second opinion I decided to get a third opinion and went to Mayo in Jacksonville. Glad I did! the Doc was more thorough and explained more about PD and what I needed to do daily/weekly in terms of exercise, diet, living, routine, resources to read, etc. Exercise has been so important…do what you can daily. It really has been helping me. I am not yet on medication and trying to hold out for a while. I have purchased a fit bit and reminds me to get up and MOVE throughout the day. Welcome and good luck – this site and group has provided helpful information. Live well – everyday! Steve

@lsdempsey

I was DX with PD August 2017 by local neurologist (although I have been able to track my symptoms back for about two years). She encouraged me to get a second opinion and set an appointment with Emory. After the second opinion I decided to get a third opinion and went to Mayo in Jacksonville. Glad I did! the Doc was more thorough and explained more about PD and what I needed to do daily/weekly in terms of exercise, diet, living, routine, resources to read, etc. Exercise has been so important…do what you can daily. It really has been helping me. I am not yet on medication and trying to hold out for a while. I have purchased a fit bit and reminds me to get up and MOVE throughout the day. Welcome and good luck – this site and group has provided helpful information. Live well – everyday! Steve

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@lsdemspey Hello Steve,

I see that this is your first post on Mayo Connect, welcome!

Thank you for sharing your PD experience with us. It seems like we are all told that exercise is one of the best ways to stay on top of our PD symptoms.

Would you mind sharing any particular type of exercise that has been most helpful to you? I enjoy Tai-Chi and also a PD Dance class. Both can be done seated but they really improve range of motion and flexibility.

Here is Youtube video that has been very useful,
https://youtu.be/ZxcNBejxlzs

Teresa

Steve what exercise did doc recommend?

Marie

@mariemarie

Steve what exercise did doc recommend?

Marie

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Doc recommended walking and moving throughout the day. I am a cyclist and also do body weight exercises (push-ups, etc,) – he told me to continue doing those BUT stressed walking with a goal of 10,000 steps a day.

I have also begun stretching (not consistent). My son is a Tae Kwon Doe instructor and he has started my on the body bag and it really seems to help.

@lsdempsey

I have also begun stretching (not consistent). My son is a Tae Kwon Doe instructor and he has started my on the body bag and it really seems to help.

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@lsdemspey I’m not familiar with the “body bag” could you please describe it?

Teresa

@lsdempsey

I have also begun stretching (not consistent). My son is a Tae Kwon Doe instructor and he has started my on the body bag and it really seems to help.

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Its a boxing type bag that hangs from the ceiling. You probably have seen it in a boxing movie TV or at the movies. I put on boxing gloves and hit the bag (not too hard) with particular punches – stressing form, balance, twisting, rotation, etc. Its a good work out (cardio) and helps my loosen back and stretches my legs and arms.

@lsdempsey

I have also begun stretching (not consistent). My son is a Tae Kwon Doe instructor and he has started my on the body bag and it really seems to help.

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@lsdemspey Steve: I have head of Boxing for PD. It is becoming quite popular. The foot movements are supposed to be especially good. Here is a link to a Rock Steady Boxing website, https://rocksteadyboxing.org/, you may enjoy taking a look at it.

Teresa

@lsdempsey

I have also begun stretching (not consistent). My son is a Tae Kwon Doe instructor and he has started my on the body bag and it really seems to help.

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Steve…sounds like you have a grip on your pd. Great for you!!

Marie

@mariemarie

Steve what exercise did doc recommend?

Marie

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Works for me, I need to walk for osteoporosis anyway.

Steve  

@lsdempsey

I have also begun stretching (not consistent). My son is a Tae Kwon Doe instructor and he has started my on the body bag and it really seems to help.

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Thanks.

Steve  

@lsdempsey

I have also begun stretching (not consistent). My son is a Tae Kwon Doe instructor and he has started my on the body bag and it really seems to help.

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I just tell myself it is a condition and not a sentence and lead as normal life as I can.

Steve  

I also call it a condition.

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