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

It takes us all a long time to wrap our minds over a diagnosis like this. So, yes, please stay in touch, @annissha, keep reading, and learning. One thing that I've learned about chronic illnesses, like PD, is that the more informed you are the better you are.

I would like to invite some of our other members to post and introduce themselves to you including @mariemarie, @susan62, @ggopher, @betsyp, @stephenmcelroy and @johnjames.

Hi to all! I am new here I was diagnosed with Parkinson's about 19 months ago but would not allow myself to believe it. Though I did try the medications for PD but they made me see things and have terrible dreams which only helped me to think "I did not have PD" then to make matters worse my neurologist said that "I must not have PD because the meds for PD would not affect me that way if it was PD"! I have been taking Propranolol HCL 20 mg.my regular doctor prescribed this medication for my tremors, I can take them up to 4 times per day but try to take only twice a day as I am afraid if my body gets use to this medication I will once again have to go back on the PD meds which make me crazy. I am from a small area so we do not have a big selection of neurologist or family doctors. I hope to find information and others with PD to share with

Hello @sherrieshe and welcome to Mayo Clinic Connect. It is good to have you join the Parkinson's discussion group.

Yes, I know the feeling of, "not allow myself to believe it." I had a similar experience. It takes a while to wrap your mind around a chronic illness like Parkinson's, doesn't it?

From your post, I'm not sure of your age and you do not mention other specific symptoms other than tremors. Have you also had balance, walking, falls, or speech problems? Were you prescribed Sinemet for your PD (also known as Carbidopa/Levodopa)?

The correct medicine and regular exercise are the best ways to keep PD from becoming too debilitating.

Do you exercise on a regular basis?

What I have used to help me with PTSD and depression is to consider them the enemy and I will fight them to the end; by the way thank you for serving and I am happy you made it home.

Hi @oldsalt1947. Happy to welcome you here in the Parkinson's Disease group on Mayo Connect. Do you have Parkinson's disease? How are you doing today? I look forward to learning more about you and your journey.

Hi Sherrieshe,
Briefly, I just turned 75 and was diagnosed 5 years ago. I had no tremors or anything like that but my new PA noticed I didn’t swing my arms when I walked up to his desk. Too much Agent Orange in VietNam apparently. You’ll find no two people have the same experience but we’re here to listen to you and tell you what we have learned.

Thank you, I'm 60 I will be 61 soon. I started slight shanking in my fingers on my left hand about 7 or 8 years ago but it was very little till about 18 months ago then my hands and army shook so bad one day that it scared me and I finally went to my doctor and ball began to roll. Thank you for you service. I've heard that many different sicknesses have come from the Agent Orange. It's a war we should never have been in and the ones that were there were never treated right. Again thank you for your service.

Yes I'm afraid I do though I wouldn't allow myself to believe it. After 18 months and shakes, constipation and stiffness I am no longer fighting the doctors on this. I was a caregiver at one time for a little lady with PD and she was so bad with her shakes she was unable to function. That's all I can see for myself on down the road.I know I've been told that each person is effected different yet I can't get her out of my mind. Do you have Parkinson's

I will be 61 November 24th I started slight jumping and shaking in my left fingers back in 2012 but it didn't happen often so I thought it was nerves. That went on till 2018! Of course it was a little worse each year. Then in 2018 I found it harder to get in and out of my car and much harder to turn myself in bed. I fell when there was nothing to make me fall. My legs would get so tired when walking any distance. Then one day the shakes were so bad I felt like I was shaking inside as bad as I was outside. I went to my family doctor that day. He took one look at me and said I had Parkinson's. He sent me to a neurologist. A brain scan was done but that showed nothing which only helped me to think that it could not be PD. I was prescribed Carbidopa- Levodopa by my neurologist but that made me crazy. He then tried another PD med which was just as bad. I had bad dreams. I would wake up screaming and often woke up because things were flying at me that were not there. When I told my neurologist this he stated "Well the PD meds would not do that so you probably don't have PD"! His comment only helped me to believe my Family doctor was wrong with his PD diagnoses. Right now I am only taking meds for tremors as I refuse to take the others because of the things it does to me and makes me feel. So I feel in my heart it is PD but I am still fighting it in my mind. I live in a rural area in Northeast Pennsylvania so the selections of doctors are very slim here and due to the Virus I have had to cancel 2 appointments in Rochester New York.

Hello again @sherrieshe
I appreciate your sharing a bit more information about your symptoms, meds and diagnosis. Sometimes it is difficult to get the right dose of meds. If I may ask a question: when you started taking Carbidopa-Levodopa did you titrate the dosage? For example, when I started the med (I was about your age at that time), I took a half tablet once a day for a week, then the next week I took two half-tablets once a day for another week, etc., until I got up to 3 full tablets a day. If you did not titrate the dose (but took full tablets every day) that might have caused some problems. Also, could you speak of what specific med you are taking for tremors?

The falling and tremors certainly are symptoms of PD. When things settle a bit, I would certainly recommend that you seek the services of a movement disorder specialist. This type of specialist is a neurologist who has had specific training in disorders like PD. They are trained differently than a general neurologist.

In the meantime, here is some information about PD that might be helpful to you, https://www.parkinson.org/? from the Parkinson's Foundation website.

I would also encourage you to look at the many discussions we have about Parkinson's here on Connect. There are discussions about speech and swallowing, https://connect.mayoclinic.org/discussion/parkinsons-and-speechswallowing-problems/; constipation, https://connect.mayoclinic.org/discussion/constipation-and-parkinsons/; handwriting problems, https://connect.mayoclinic.org/discussion/parkinsons-and-activities-of-daily-living/; breathing difficulties, https://connect.mayoclinic.org/discussion/difficulty-breathing-autonomic-dysfunction-w-pd-congestive-heart/;
loss of smell,https://connect.mayoclinic.org/discussion/lose-of-smell/.

I'd love to hear from you again. Will you post again and let me know how you are doing?