Hello. I was diagnosed about 5 years ago and have been doing fairly well. I can feel changes now and am doing some advanced planning for my future. If you are still in this group, send a response. Perhaps we are at similar stages.

I was diagnosed in 2016 at age 49, and had DBS surgery in 2017. It was a total life-changer for me -- I'm off all meds and am tremor-free, although I still have a bit of muscle stiffness and slow speech.

Can I ask if you noticed emotion/behavior changes after the DBS?

I have found self learning and the support of others to be invaluable in my PD journey!..You are still in charge but knowledge and support are powerful!
I felt like I was side swiped by my initial diagnosis but then changed my attitude and decided to tackle my symptoms head on and learn everything I could learn about PD. I consider myself my own PD disease management expert and case manager. There's definitely no shortage of pharmacological and non pharmacological interventions to try for symptom management. I found vigorous exercise, stress reduction/minimizing stress, and intensive LVST speech and physical therapy exercises to be very beneficial. Also a pro-active movement disorders neurologist as my coach is essential.

Hey, I was diagnosed about six months ago and I only recently turned 50. The neurologist wants me to go on a low dose Levodopa but I'm resisting as I don't want to develop dyskinesias. I can be a little slow at times and I get all kinds of aches and pains (especially my neck). I'm tempted to go on medication as I just want to be normal again.

My wife was diagnosed a year ago. I knew she had it a year before that. I started doing research with Google. I found 4 different treatments that all showed significant efficacy. I started her on all these. Her tremors have disappeared and she is again sleeping well. Of course it depended on her following my course of treatment. She is also being seen by a physician and we both talk once a month about her treatment. He is all in favour of the treatments I have started for her. I am not under the illusion that I have found a cure. I just have found a way to reverse the symptoms, at least for a while. She is very happy with the results, of course this makes me very happy. I think that it is best not to just let the disease take its course but to try things that have shown promise in studies.

I was diagnosed at 50 18 months ago. Been on 3 different medications. On Sinimet now and already increased it twice. Tremor is not well controlled and I feel balance issues starting. My husband suffered a major anxiety attack at my diagnosis so I try to hide everything from her, but leaves me with no support. Looking for people to talk to.

Paul, you sound so many others afflicted with this disease. It has nasty symptoms and currently has no cure. I suspect you feel a bit abandoned. It sounds like all you have now are people online with whom to talk. Well, if you are in a big enough community, perhaps there is a support group. It really helps to talk face to face. My wife has PD and I feel a bit helpless. I am doing everything I can for her. I have googled this disease and am treating her with everything that has shown promise. I suspect I will not be able to cure her. I am lucky in that my wife feels safe to tell me about her symptoms and what is happening with her.

We live in a small community, but even that has a support group for us. I hope you live where you can find some support Paul.

Hi,

I try to tackle the symptoms; as they appear.

I might try the DBS, since it sounds like a good option.

The medication is a bit hard.
The symptoms don't seem to go away with just one.
I will probably have more in the future.

I worry about having to have speech therapy as well as physical.

Hopefully with my neurologist and movement disorder specialist, I'll be able to handle it, better.

Thank you

I was diagnosed in 2012. I can understand being reluctant to seek support. People have not supported me in the past. in 2015, I adopted a dog who is a wonderful support. I am now 60 and on long-term disability with this F%%King disease.

8i was diagnosed with Parkinson’s four years ago. I have been rctant to seek support as my stubborn nature told me I can handle it alone. Well, I can’t. I am just looking to chat about what others feel. I am 52 years old. If anyone is kind enough to write back, I would really appreciate it

Tullamore,

It sounds like your going through a lot.

I'm glad your dog is helping.

Parkinsons can't be cured; but with medication it can (hopefully) be slowed.

I'm 34.

DBS sounds possible.
I've read it has good results.

Thank you.

My husband has been told he has it. Seeing neurologist Monday to confirm. I am very scared

My husband was put on PD meds to see how he reacts as the Dr. said he had PD "features". Had back ablation yesterday. Hard to deal with the reality if it is PD. He is 70. I am afraid.

know that you are not alone in your fight, we all have similar hopes and fears however, we all must focus on the now, and strive to keep a quality of life that keeps us striving for more.

the above comment was meant for byebyebill