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

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.

Hello @cindylb

I can't say that I've ever heard of that particular symptom before, but Parkinson's affects everyone differently. Perhaps someone else in our group will be able to relate to it.

You mentioned that his doctors are not sure about his diagnosis. Have they ever tried him on a low dose of Sinemet (Sinemet is the gold standard for treating Parkinson's)? Often times if a patient responds to the treatment that helps to confirm a diagnosis.

Teresa

My husband maybe does or maybe does not have Parkinsons. We've been seeing his doctor for about a year now. He may also have or not have Benign Essential Tremor or perhaps he has both. We just finished an EEG for brain activity and don't have results yet. He has tremors in both hands and his head and neck primarily. My question is.......has anyone or a caretaker of anyone with Parkinsons had the following symptom? My husband has a pressure that starts in his chest and goes to his head...a head rush basically that creates fainting, dizziness and extreme fatigue. He has these 'episodes' once or twice a week. The doctors aren't sure.....hopeful someone out there might have some insight? Thank you and bless all the caretakers and people with this disease.

Hello @101082101082

Yes, here is the link which will take you to a discussion on Dystonia, https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/

Also, here is some information about dystonia care at Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/dystonia/dystonia-care-at-mayo-clinic/ovc-20163833

Teresa

is it possible for me to be member having dystonia not PD. Many PD people suffer from both, but I only have Dystonia.

@techi I am glad to hear that you are at Mayo and getting such good care. Please keep in touch with us and let us know how you are doing. Is your next test scheduled sometime soon? Teresa