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

Are We Kari and Gary in this group we are trying to understand more of what Mayo offers we do have an account and have posted items please confirm this Teresa !

@tntredhead I'm sorry to hear that there isn't a simple answer to the problem. It is important for you to get your rest at night.

Hi, I’m Tina. I was diagnosed four years ago with Parkinson’s at 54 yrs old— only started with a left-hand tremor. About a year ago I started having Estonia and my left foot. In the past six months, it has progressed now to having dystonia lasting way longer than 15 minutes usually a hour to two hours very painful and involves my entire left leg and both hands and my jaw. It was surprising that it’s so painful and it nothing you can do about it but just try to get through it. I am taking carbidopa levodopa 5 times a day and then the extended release at bedtime.
Since this Dystonia has started, I was started on the neupro patch. I took it for three days and had a lot of terrible side effects so I had to stop it. I am wondering what any of you are taking for the dystonia that’s so very painful.

I am sure your husband dosn't feel to good about the fact that he is having this issue. And he does know what is going on. I spent many years, i mean many years taking care of my mother. Who knew what was happening and others thinking she did know anything. We are always there.

But I am here to speak on the issue of Parkinson. I was diagnosed with PD last year and with Fibromalgia this year. I have a tremor in my right arm, have problems holding onto things. My doctor tells me I have early stages of the disease. I am an artist and writer. This is causing me a great deal of depression. I have other issues as well.

Others think that there is nothing wrong with me, that I am making all of this up. You don't have Parkinson's I is all in your head. Between these two diseases, it is hard for me to even hold down a job. I can't even get disability. I feel very discriminated against

I am new to this. I am only 55 years old and it feels like I have been given a curse. I spent most of the last 15 years taking care of my mother. she passed away this pass January. And this is what happens. I now I shouldn't feel I deserve something else.

I didn't take care of my mother for applause. I did it because it was the right thing to do.And I would never trade what I did for anything in this world. It was the best gift I could of ever received from GOD,.I would do it again in a heart beat.

But to have be given these two diseases

Thank you

Kris Schmuland

Hello @edieteresa, and welcome to the Parkinson's support group on Mayo Connect. It sounds as if you have had a difficult time getting a diagnosis. Many of us with Parkinson's waited for several years before we found the correct diagnosis. How are you feeling now?

Have you begun any treatment yet? I'm thinking of medication or an exercise program? If so, have the treatments been helpful?

I look forward to hearing from you again. Will you post updates as it is convenient?

Hello @cacrouch1958,

I'm glad that you found this forum. I see that others have posted with you. It is good to hear that you have a strong family support system as well as faith. I can understand the difficulties you both must be feeling now that the PD is progressing.

There are lots of speech therapists who can assist with swallowing and speech problems. @ethel2017 has mentioned one program, and I'm sure that your neurologist has speech therapists that provide help for his or her PD patients. I have personally had speech therapy and found it helpful.

As your husband's temperament has changed with the physical changes, have you mentioned this to his doctor? There might be medications that will help him to adjust to the changes that are taking place.

Hello, I am Edie. I was diagnosed with Parkinsons on July 26 of this year after spending thousands of dollars with doctors trying to find out why I was blacking out with no warning. I had one syncope where I fell into the bathtub breaking my arm and thumb on opposite arms. All of the mris, stress and cardio test came back clear. I have no one for a support system.

Hi, my husband has had Parkinsons for 15-20 years. Last 3 years it has progressed. However the past 3-4 months there’s a noticeably progression. Weekly falls and speech is soft and using a walker. His mind is doing well and he is able to care for himself. We’ve been married 33 years and never argued or raised our voice at each other in the past; but have a few times this past 3 months. The arguments have been regarding his symptoms, not driving and him disagreeing. He is more irritable. His Parkinson’s is now affecting me.

We have a strong family support system and are moving into a gen suite attached to our son’s home soon. Our faith in Christ keeps me strong but I do get overwhelmed at times.

I still work from home part time with retirement in January of 2027. This is my first post here.