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

Welcome to the Parkinson’s Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson’s or caring for someone with Parkinson’s. Let’s learn from each other and share stories about living well with Parkinson’s, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@hopeful33250

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?

Jump to this post

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.

REPLY

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.

REPLY

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

REPLY
@hopeful33250

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?

Jump to this post

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.

REPLY
@sherrieshe

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.

Jump to this post

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?

REPLY
@colleenyoung

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.

Jump to this post

Yes, I have been diagnosed with Parkinson a few months ago, I am currently being treated with carbidopa-levodopa 25-100MG, 2 tabs at 8, 12,4,8. Still have off days, in process of getting a scooter with lift from VA. The cause of my Parkinson is the results of chemical exposure while serving as a combat USMC in Viet Nam. Would like to get a u-step walker. The mental trauma of dealing with the disease is still eating at me. I also have PTSD caused by war. Thank you for heling so many people. God Bless.

REPLY

Semper Fi. No, I wasn’t a Marine, but I spent 6 months as an Army liaison with them in Danang. Good folks. I have some difficulties with the fact that I survived 18 months there and now the decisions of my own government are going to kill me. So I take each day as it comes determined to do what I can while I can. Fortunately, I’ve not bad enough now to keep me from doing most things but I just can’t do them as fast or precise as I once could – but I’m 75 now and figure I’d slow down anyway.
When I came back I met and almost married a nurse who volunteered at the VA. I saw a lot of guys way worse than I am and they mostly felt the same way. Then I found something I use to this day: I can not control the people and situations around me – I can only control what I do about them, so for today, and only today, I will……….. I may not be able to do it tomorrow but I can do it today.
You can do this Marine. Just for today.

REPLY
@sherrieshe

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.

Jump to this post

Hello @sherrieshe,

It has been a while since you last posted about the possible diagnosis of Parkinson's. How are you doing with that? Have you been able to get a second opinion or start any medication to help with your symptoms?

I see that you asked me if I had Parkinson's. The answer is "yes." My symptoms are not as severe as some, but some of the stiffness and gait problems can be difficult to deal with.

I would enjoy hearing from you again. Will you post an update when it is convenient for you?

REPLY
Please login or register to post a reply.