Amen sister. My wife and I drove 5 hours to a visit a neurologist working out of the only hospital in the state that routinely does DBS surgery. He asked me why I was interested in the surgery. I told him that I wanted to reduce the tremors and hopefully regain some of my energy and reduce my fatigue. He immediately stopped me and stated that PD had nothing to do with fatigue and suggested that I see a cardiologist, which I do twice a year. I told him I disagreed. I waited a year for this appointment and I immediately focused on out of state medical centers.
You are now my PD guru. Thank you for sharing your journey. I will tell you that everything you share on your show, is relatable, and important to me. I am rooting for both of you! xoxox
Thanks for putting the time and energy into your channel. I was diagnosed in 2012 but I knew something was wrong way before that. (Expressionless face, chicken wing, etc). Recently had DBS and for me was the right thing to do. Love your show.
Lovely to see you looking well again. I think most doctors look at medication only as a sign that they can cure a disease. You're very fortunate to have found a doctor you like.
I think you’ve just answered my questions about my husbands latest aches and pains . It is the Parkinsons. Posture and symmetry are challenge ! Great video, than you 😊
Thank you, Thank you, Thank you for this wonderful podcast. You and Brian have some great topics and opinions. A lot of us PDers do a lot of exploring, researching, listening to professionals, and just regular people. We need to sift through the information and keep the points in mind as we make choices and decisions. I like how you let us share in you and your crews thoughts and decisions. 1.5 years diagnosed / 71 years old. My right shoulder has pain many times when I wake after sleeping on it. As I sit here listening to you at my computer and using my mouse I am thinking is this activity contributing to the pain! My bet is it is part PD with a part posture. I am working with a massage thearapist for lower back pain and making good progress. And she noticed some work to be done on the shoulder but after the lower back we will target the left shoulder then the right shoulder as all these muscles are interacting and reacting. Love to you and your entire crew, Gerry
I was diagnosed with fibromyalgia in 2006. The pain and hard spasms increased. The pain started increasing 2016. I was diagnosed in 2022. The Parkinson’s medication relieved about 90% of the pain-immediately. I used to cry because of the intense leg pain. My most obvious symptom is the way I walk and freeze. No one can tell me pain is not a part of Parkinson’s.
I completely agree 💯% I have been dealing with plantar fasciitis for over a year now which is a "coincidence" that it's on the same side as my Parkinson's.
I was diagnosed 12 years ago. Still maintaining, currently taking Duopa via pump 24/7. Next step is DBS. Hopefully years away. Would love to share my experience with you and listeners. Contact me and we discuss how I have survived so far. Love your channel. Stay strong you keep moving and you will keep moving.
My dear wife has PD and suffers from constant neck pain and a very week voice which is a real problem with any communications. Also motion issues but as troublesome as those are, the neck and voice are top of list. It would be great to address the voice issue. You guys are doing a great job.
@@thesecretlifeofparkinsons Thank you- I have had a cell [android] app written which she can speak into the phone and it understands her [very] week voice and a mechanical voice speaks the words. It is not perfect but it works in many situations.
In 2020 I went to an orthopedic doctor for leg pain. After a year of PT, nerve blocks and ablations with no noticeable results I quit. In 2021 I went to the pain clinic at Mayo clinic. They diagnosed the condition as Meralgia paresthetica, a condition that causes tingling, numbness and burning pain in the outer thigh. I didn't fit the normal pattern for people with this condition but they decided to take a shot at it and it worked. In 2022 I was diagnosed with PD. Tremors are on same side as the leg pain. I feel that the leg issue is strongly related to PD and was a precursor of the motor symptoms I developed. I've mentioned this to both my movement specialist and the pain clinic doctors. They did not dispute my reasoning on this.
Until I had PD, I was always conscious of good posture. The problem is when I have bad Bradykinesia, telling myself to straighten my shoulders doesn't work.
I notice you have slight asymetry of your shoulders -- so do I. In fact I'm becoming increasingly asymetric in my shoulders and arms and it's down to the fact that the left side of my body is more affected than my right. Unfortunately, no matter how hard I exercise or try to correct the difference it's gradually becoming more pronounced. Ah well... that's life with PD.
We speak the same language. For me, both sides are now effected, but my left side is my initial/worse. My left shoulder is much higher than the right. One of my very first symptoms was frozen shoulder. Unfortunately I'm getting a winged scapula on that side :( Oh, the fun continues....
How did you know that my main Parkinson’s related problem just now is right side of body shoulder, hip, and thigh pain? One particular issue is aggravation caused by three-point seat belts pressing on my right shoulder.
I feel like someone just mentioned that to me recently. I'll have to follow-up with a few people, or reach out to my eye doctor and ask. That would be a good topic!
I will have intermittent right shoulder pain, had PT for short time. I ask several time could this be Parkinsons and I got" no" answers . I believe when I have right hand tremors the bicep is so tightened it causes pulling at the attachment s causing shoulder pain
Thanks Jessica for sharing the information. My husband has PD and suffers with painful shoulders but as a tradesman we never know if it’s Parkinson related, old age or his work.
I have chronic pain in my neck and between my shoulder blades. Excruciating! And it affects my movement big time. Knots and stiffness and its as if my bra straps are digging down into my shoulders. Chronic pain is debilitating and depressing. Aleve seems to help this. One gel tab in the morning per my neurologist/mds. I wanted to discuss botox shots to the back of my neck, she said no it's probably due to inflammation. This reduced my daily pain and discomfort.😊 advil doesn't agree with my stomach but can be used also. Thnx for sharing Jessica! (my PD symptoms started about age 45, diagnosed at 50. DBS @ 56. 🙌🙏💪
I wish my movement specialist was like yours. He does not want to talk to me about my PD or the meds or my condition. He works out of the same office as my last MD but it's different trying to talk to him. I am wondering if my age is part of this problem. I just turned 85 last month. I stopped working in Dec. and feel like I am going down hill since.
Are you exercising and socializing? That is the key to slowing the progression...at any age. I'm surprised your movement disorder specialist doesn't want to talk about anything PD related.
No it hasn't. Lowering the meds, I do notice my symptoms more and my on times are not as long. But I'm also not as dyskinetic. Still a little but not a lot. Now i just have to decide what I prefer...feeling more symptoms or feeling more dyskinetic. The dyskinesia is inevitable for me in the future. So if I can hold off for a little longer, I'd like to try.
All my pain is PD related . I had an emg of my entire left side and the cause was determined “ central “ meaning coming from the brain ( PD) it’s like hot cement pouring into the left side of my entire body . Eye connects to jaw pain connected to my back all the way to my foot . I take Advil and l- theonine .
(1:23) Your other "right"??? 😊 And yes I agree 98% of everything I'm feeling is PD related. No Doctor, specialist or anyone else for that matter, knows what I'm feeling more than I do
