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

My name is Beverly and I decided to do some reading on Mayo Clinic as were grasping at straws on my mother whom hasn’t been dex with Parkinson but shakes very badly off and on. So I’m just trying to decide what our next step is because we have exhausted everyone and same test which always come out normal. She has extreme weakness and at times can’t even walk.

Hello Kristina @101082101082

There is certainly no need to apologize for responding late. I hope that the Dystonia discussion group here at Mayo Connect is helpful to you. Please keep in touch. I would be interested in knowing how you are doing.

Teresa

Dear Teresa,

Thanks so much for the website...just opened your message.  Just getting to know how Connect works. The PD community is very helpful to dystonia because so many of PD also have dystonia.

Our research foundation to the DMRF, Dystonia Medical Research Foundation where I specifically go for my problem.  However, since dystonia is a neurological movement disorder

I go to many PD meetings and learn so much and get so much hope.

Many with PD are getting better and better with all of the new research if the patient is able to do

the exercises and treatments.

Appreciate your note and apologize for not responding sooner.

Kristina in D.C.

Thank you once again. We appreciate all your support.

@cindylb

Getting a diagnosis is the tough part of PD. It took me about 15 years. I hope your husband's journey is a little shorter than mine.

Here is another website that you might find interesting, or at least helpful - http://www.parkinson.org/. You can get a lot of info about the different forms of PD, including many non-motor symptoms.

We will look forward to hearing from you again!

Teresa

I will keep you posted. I read the material on the site you provided the link for and it was very insightful and helpful. I'm always looking for information to try and resolve this unknown malady (so far) that my husband is suffering.

@cindylb

It sounds as if you have covered a lot of areas of concern, given his symptoms.

Will you keep us posted as to how your husband is doing?

Teresa

Yes, we've checked his heart, blood pressure, EKG, etc. THANK YOU SO MUCH for the link.....

@cindylb

How frustrating this must be for you both. I'm sure that these symptoms are uncomfortable. I suppose your husband has been checked for blood pressure and cardiovascular problems? Have you sought a second opinion for your husband's symptoms?

Here is a link to a website that lists all of the Centers of Excellence for Parkinson's treatment, https://www.ninds.nih.gov/Current-Research/Focus-Research/Focus-Parkinsons-Disease/Udall-Centers.

If you live close to one of these centers, this might be a good way to get a second opinion regarding Parkinson's.

Teresa

Thank you Hopeful. My husband was on Sinemet and then also on Primidone (for the benign essential tremor). He is now off the Sinemet to see if the tremors become worse (which they have not). He is still on the drug to treat the essential tremor but still has tremors. It's a bit of a mystery what he does or doesn't have. The doctors can't seem to identify anything that causes the head rushes. He also has COPD but the doctors don't think that's contributing to the tremors. It's a real mystery.