Newly diagnosed with Parkinson

Posted by oronogo @oronogo, Jan 1, 2018

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.

@hopeful33250

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

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Hello @mariemarie, Thanks for that testimonial regarding Pedaling for PD as well as the Rock Steady Boxing. I'm glad that you found the Boxing class close by.

Here are some websites about the Pedaling program, https://www.medscape.com/viewarticle/775121 and
http://www.pedalingforparkinsons.org/home
@oronogo, if you can't find the program at a Y near you and if you have a stationary exercise bike you might try it at home. Of course, check with your doctor first before beginning.

Teresa

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@lisalucier

Hi, @oronogo — just wanted to see how you were doing with the Parkinson's and the hand tremor you were experiencing?

@lsdemspey, thinking of you, as well. Are you still doing all your exercises? Have you gone on medication for your PD, or are you still holding off at this point?

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I’m still exercising and no I have not started meds yet. I saw a Mayo movement specialist and he told me exercise and come back in a year. My local dr’s all want to start me on meds. My tremor in my hand may be a little worse, just taking it day at a time. The heat is really bad now.

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@lisalucier

Hi, @oronogo — just wanted to see how you were doing with the Parkinson's and the hand tremor you were experiencing?

@lsdemspey, thinking of you, as well. Are you still doing all your exercises? Have you gone on medication for your PD, or are you still holding off at this point?

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@oronogo

I can empathize with you, Jane. The heat makes everything worse! I'm glad that you are exercising. If you feel any concern at all regarding the no-med advice you were given, please feel free to contact your doctor through a My Chart message or by a phone call to his office. I am sure he/she would want to know if any of your symptoms had worsened.

If I may ask, what type of exercises are you doing? Besides the tremors, what other symptoms are you having currently?

I look forward to hearing from you.

Teresa

Liked by Lisa Lucier

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@lisalucier

Hi, @oronogo — just wanted to see how you were doing with the Parkinson's and the hand tremor you were experiencing?

@lsdemspey, thinking of you, as well. Are you still doing all your exercises? Have you gone on medication for your PD, or are you still holding off at this point?

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Still maintaining my exercise routine biiking, walking, lifting weights. Not on the meds yet. Don't feel like I need them. I have had Loud therapy mostly for my voice, speak, and swallowing. Seems to be helping. I also have had BIg therapy – helps me stretch out my back when it stiffens. I continue to do balancing exercises as a proactive measure – although balance is not an issue…yet 🙂

Hope you are well – BTW my tag is @lsdempsey – not @lsdemspey

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@lsdemspey

Good to hear from you! How nice that you are still without meds and doing well. Maintaining a regular exercise routine is so very important with PD. The therapies you mentioned, Loud and Big and really good ones for PD. Tai-Chi is also great for range of motion and balance problems. Outside of Loud, have you had any other speech therapy? Are your swallowing problems better now?

In reading your post about your tag if you look under your picture it shows "@lsdemspey."

I look forward to your posting again.

Teresa

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So glad you are seeing a Mayo Movement Disorder Specialist. You are in good hands. Like you, my husband's first neurologist wanted to start him on meds, but when we saw Dr. Mehta (LOVE that man!) at Mayo, he was in agreement that as long as Walt felt ok, was functioning adequately, and wished to delay the start of meds, he was fine without them. Eventually, he did begin meds to help with his tremor, but it was only when he felt that his symptoms required medication. Hang in there!

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@lisalucier

Hi, @oronogo — just wanted to see how you were doing with the Parkinson's and the hand tremor you were experiencing?

@lsdemspey, thinking of you, as well. Are you still doing all your exercises? Have you gone on medication for your PD, or are you still holding off at this point?

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The tremor is the only symptom I have at this time. I’m doing Big hand exercise and stretching and balancing.

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I have found the best place to get answers is on the Parkinson's forum at HealthUnlocked. I posted a comment for newly diagnosed on my profile.

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@lisalucier

Hi, @oronogo — just wanted to see how you were doing with the Parkinson's and the hand tremor you were experiencing?

@lsdemspey, thinking of you, as well. Are you still doing all your exercises? Have you gone on medication for your PD, or are you still holding off at this point?

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@oronogo That all sounds very good! I am pleased that all is going so well for you.

Teresa

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@lisalucier

Hi, @oronogo — just wanted to see how you were doing with the Parkinson's and the hand tremor you were experiencing?

@lsdemspey, thinking of you, as well. Are you still doing all your exercises? Have you gone on medication for your PD, or are you still holding off at this point?

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Hi we may be at the same stage, my good luck to you! I too work out, stretch and do balance exercise, just an evolution of what I have done for many years. Everyone thinks it all helps and it certainly makes me feel better about myself. What is 'Big hand exercise' please?

Liked by Lisa Lucier

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@hopeful33250

@lsdemspey

Good to hear from you! How nice that you are still without meds and doing well. Maintaining a regular exercise routine is so very important with PD. The therapies you mentioned, Loud and Big and really good ones for PD. Tai-Chi is also great for range of motion and balance problems. Outside of Loud, have you had any other speech therapy? Are your swallowing problems better now?

In reading your post about your tag if you look under your picture it shows "@lsdemspey."

I look forward to your posting again.

Teresa

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Thanks Teresa – good to talk with you too. 
Do you know how to fix my tag?
No other therapy besides loud – as far as I know. My therapist is certified in a number of techniques so she might have slipped in an exercise or two outside of the Loud therapy. My swallowing is better but still an issue. 

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@hopeful33250

@lsdemspey

Good to hear from you! How nice that you are still without meds and doing well. Maintaining a regular exercise routine is so very important with PD. The therapies you mentioned, Loud and Big and really good ones for PD. Tai-Chi is also great for range of motion and balance problems. Outside of Loud, have you had any other speech therapy? Are your swallowing problems better now?

In reading your post about your tag if you look under your picture it shows "@lsdemspey."

I look forward to your posting again.

Teresa

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@lsdemspey Steve, I'm not sure how to fix your tab – let me check with @johnbishop another Mentor and see if he knows what can be done to change it.

Teresa

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@hopeful33250

@lsdemspey

Good to hear from you! How nice that you are still without meds and doing well. Maintaining a regular exercise routine is so very important with PD. The therapies you mentioned, Loud and Big and really good ones for PD. Tai-Chi is also great for range of motion and balance problems. Outside of Loud, have you had any other speech therapy? Are your swallowing problems better now?

In reading your post about your tag if you look under your picture it shows "@lsdemspey."

I look forward to your posting again.

Teresa

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Hi Steve, You'll see that your @username has now been corrected to @lsdempsey.

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@lisalucier

Hi, @oronogo — just wanted to see how you were doing with the Parkinson's and the hand tremor you were experiencing?

@lsdemspey, thinking of you, as well. Are you still doing all your exercises? Have you gone on medication for your PD, or are you still holding off at this point?

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Hello @napier

Welcome to Mayo Connect! I am Teresa, a volunteer mentor with Connect and also a Parkinson's patient. I'm pleased that you found our online discussion regarding Parkinson's.

How long ago were you diagnosed? I take it that you are currently just exercising and not using meds?

Have you taken the Big exercise program through a physical therapist trained in the LSVT Big Program? Here is a link to a Youtube video introducing the LSVT Big program, https://www.youtube.com/watch?v=fpTqcWs2NUY

I had not heard of "Big Hand" before however, I did find a hand exercise program on Youtube, here is the link,
https://www.youtube.com/watch?v=Ez2GeaMa4c8 I have tried it and it is quite good.

Do you have any problems with your handwriting (becoming very small, etc.)?

I look forward to getting to know you better and having you share about your experiences with PD on Connect.

Teresa

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@lisalucier

Hi, @oronogo — just wanted to see how you were doing with the Parkinson's and the hand tremor you were experiencing?

@lsdemspey, thinking of you, as well. Are you still doing all your exercises? Have you gone on medication for your PD, or are you still holding off at this point?

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Hello Teresa, thank you for this. Is there a mechanism for us to have a brief private message or phone call, please?

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