Trying To Connect With Others Who Began This Journey With Tremors Which Then Got Progressively Worse. | MyParkinsonsTeam

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Trying To Connect With Others Who Began This Journey With Tremors Which Then Got Progressively Worse.
A MyParkinsonsTeam Member asked a question 💭

I have been diagnosed with familial tremors but they have gotten progressively worse, beginning in legs, to both hands and legs, now adding head shake. I have issues with balance and have had several falls in the last year. My neurologist feels these increases are due to stresses in my life, loss of my son and Father to cancer, husband now home bound after3 surgeries last summer etc. I feel like his is missing something and am worried. Have fatigue, some drooling and focus issues. I am currently… read more

posted May 11, 2019
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A MyParkinsonsTeam Member

Thanks so much for your input everyone! It does reaffirm my thoughts that ropinerole May be a wash for me . I have made a list of your recommendations and will ask him about them. Something is definitely better than the nothing I have now, thanks so much for your help!

posted June 1, 2019
A MyParkinsonsTeam Member

My husband and I had been seeing a local Dr. for many years but felt he was just not forward thinking in his treatment. So we asked his PCP to give us a referral to Duke it took us 9 mos for our 1st appointment but well worth the wait. Hopefully you have a Dr your comfortable with and really listens and understands the challenges your experiencing. There are so many things that can help PD patients to have a quality of life. There are Botox injections for drooling and so many other ways to help whatever symptoms you exhibit. My husband was not a good candidate for DBS surgery but with some adjustments to meds he is doing better. He was using a walker and suffering terribly with freeze and had several falls. He was over medicated then under medicated. As I said we go to the Y for water aerobics he had to use a walker at all times just to get to the pool now he walks on his own. People there are just amazed at the difference, he also does his cycling class along with a small group that have PD. They are all just so different. He also goes to PT off and on throughout the year which helps with balance. Believe me there are plenty of days he doesn’t feel like doing anything especially exercise but he goes and is glad he does I think he also likes the comrade of the class. We travel, go out for meals and try to enjoy life, differently but we still enjoy. Good luck to you Sandy .....

posted May 20, 2019
A MyParkinsonsTeam Member

You're welcome...I'm fairly new at dealing with all the weird stuff that comes with this crazy disease but I research the heck out of everything. Feel free to share or ask a question about anything. If I don't know the answer I will help you find it. Be well...

posted May 17, 2019
A MyParkinsonsTeam Member

This is how my pd started. It went to all parts of my body. I was on gabapenon for years tne. Changed to pramipexole and this med caused bad hallucinations so much for that. I still take a reduced dose for restless leg. I am now on a duopa pump with liquid form of carbidopa/levodopa and it has done wonders for my pd, attitude. I am getting a real positive attitude.

I detest this disease and i will beat this disease mark my words.

Jimmie

posted May 31, 2019
A MyParkinsonsTeam Member

Hi sorry to hear you’re having to deal with this, weeks ago my husband was going through the same issues and had slowed down tremendously, we switched to a different doctor who prescribed carbidopa/levodopa and noticed an immediate result. He had been on repinorole for 5 years and didn’t seem to be working. Hope this information helps, good luck and god bless 🙏🏼

posted May 31, 2019

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