Demoralization, Meaning, and Parkinson's 

I am so longing to see people with parkinson's do this work instead of doctors who only know it second hand.

Brilliant. Demoralisation... I call it struggling to cope, with so many things and continuing to make the effort day after day. An inspiring, perceptive and encouraging talk. I will watch this again and again to remind myself of the strategies you suggest especially the importance of social connections. Thank you.

This is indeed the stuff we should be talking about. Spot on. Help is on the way! But the answers have been floating around. Patients have discovered them themselves. Then they make their way to the “dream team”. The notion of self-efficacy is brilliant. A whole concept and regimen was created for the community by a person with Parkinson’s a decade or so ago! I love your panel members, truly. You are on the trail, but look up, there are countless people well ahead! Keep up the great work, but if you want to move faster, rely on the collective research already performed by millions of people for decades! Value the lived experience. The person that can best convey that to the world is the most valuable person to PWPs. Be that person, and you will be rich and have more success than you ever could’ve dreamed for yourself.

I found this to be one of the most helpful, hopeful videos for PD. Yes! Demoralization is a thing. The concept of self advocacy is so true. I don’t know why no one has mentioned it before. I would kill to have one of these doctors as my MDS. Nobody talks about the trauma of just hearing the diagnosis…

This is very helpful. Thank you. I have been struggling with not wanting to respond to phone calls and visits from family and friends. I was an active, social person before my diagnosis just 6 months ago, but PD has literally stolen my personality. I feel ashamed, weak, and afraid. I do everything I can to combat the symptoms with medication and exercise, but I’ve kept socialization to a minimum. I think this is because I don’t feel comfortable talking about my problem too much to the few family members who have supported me. I feel like a burden. I now see that I need to find people like me who need to share their experiences as I do. It’s part of the plan. Thank you.

people with PD typically take small steps because they can no longer stride! I break EVERYTHING down into smaller steps, visualize success, expect the best...this is how I WIN

Great explanation. I have been going through more of this lately and struggling to get control of it. My self worth has changed several times since my diagnosis five and a half years ago. It's changed by other things than my diagnosis and even loss of career. I am divorced, my youngest child is now second year at college. I was proactive in the early years with treatment exercises etc but now with symptmos progressing, meds increasing there is a greater loss of hope, these and other life changes combined have created a large hole I am left to try and dig a way out of.

Through observation of myself I had a very concrete realization that sometimes my fear to go forward had to do with cognitive trouble in mentally embracing the sequence of physical action it takes to perform certain physical tasks like emptying the dishwasher. An "I can" attitude is helpful but not always possible! At certain points in the disease we are profoundly aware that our WILL is less available.

This was helpful. I am glad to hear clinicians talking about this concept and the need for a whole person approach, but I believe including a PWP on your panel would have rounded out the conversation. It is not always a lack of internal motivation and lack of self-efficacy that is the issue. Quite often the demoralization and infantilization that comes from external sources becomes yet another obstacle to overcome while trying to move forward and manage an already difficult disease.

Having a parkinson support group helps me cope. I don’t have to explain how I am feeling or why I am feeling tired or why I am annoyed with my last visit to my neurologist.I also think that you doctors have to do some research about how exercise can help and there is PD Warrior, which helps more than medication, in my opinion. Having been in the nursing profession, it makes me annoyed when I hear we’re all similar. As a Parkinson patient, I am frustrated with researchers who ignore exercise as a treatment for Parkinson. I just wish they would stop calling it a disease. It is a syndrome not a disease,,,, we call diabetes diabetes but yet we call Parkinson’s a disease. Or is it because it is usually an old people’s disease. Thank you, Indu for what you said .

Yes. All my life I've had some periodic tremors. I never realized how debilitating rigidity and extreme muscle contractions could be. As a child I knew people with parkinson's and was amazed at the ones that didn't shake. I thought that "wow" they are amazingly some how covering the tremors, and I hope that I can do that as I grow up and figure out how they're doing it. I had no idea of the non shaking or tremoring symptomology, and what that could actually mean. Didn't even realize my own movement and gait issues that people would pester my parents about could maybe also be part of that. I was doing everything acrobatically and had amazing loose balance even with the uncontrollable bobbing and weaving and cogwheeling. So they only ever drilled me constantly to appear to walk naturally. That was exhausting, and hard not to have complex over, when I was more scrutinized about it. I never knew the movement part of every pediatrician visit I had, wasn't just what happened to every other kid going in for whatever else, like strep swabs or the flu, or the physical for camp. I only found out that wasn't the case for everyone else growing up in the last couple of years. ...and I just turned 59. I can't access those volumes of history now that I grasp he was taking notes to maintain a baseline every time. I don't know if he even told my mom about any suspicions because he figured that my life in general was meeting the milestones he felt were most important. Sadly, he's gone now. However I do know one of my friends who was like a very regal grandmother to me from church, actually died sitting straight up frozen in stop motion. I think she was in her early nineties. I always tried to carry myself like she did. I never understood part of that ballerina like posture was part of her Parkinson's as well. She never talked about the pain of muscle contractions. I sort of wish she had. She did explain to me that I didn't have to get married if I didn't want to, which was freeing to think about as a concept.

What about single people with Parkinson's????? First female neurologist that I went to see refused to even tell me that she thought it was Parkinson's but wrote it in her medical notes which she probably knew I had no access to because she was from a different hospital than the one I generally go to. She also failed to understand that a pulse of 40 was reason to take me immediately to the ER! I have no faith in neurologist whatsoever I almost died a week later my heart had a full cardiac blockage! It could have been prevented or could have been at least noted and medical attention could have gotten there a lot earlier! I am disgusted with that person who failed to recognize me as a person a living being. She did say I'll see you in 3 months with absolutely nothing for follow-up! You guys get paid for that? You get paid not to tell your patients what exactly they have? Unconscionable.

A prescription for exercise, makes it alright for you to make the time and space for yourself for it, without people saying that it's a luxury that you can't afford to take the time for, because everything you do takes extra time, and people are already expected to do 80 hours of work a week, particularly if we can't hide parts of how we are disabled. The pressure is on to do twice the work and of our coworkers and be on call as well, for work round the clock. Declining anything extra, is held over our heads I think even more, when our disabilities are not hidden. When we don't have the option of not disclosing it is used against us at every little turn. Not only like the, "but you don't have children" job trope, but the, "you know you're lucky we keep you on, or they keep you on, etc. I wonder why I would think or say a thing like this. Has it been just an imaginary projective experience? These things are for sure part of the demoralization, long before feeling demoralized for things you actually really aren't able to do on the level you feel should be your reasonable par for what you're exchanging. The prescription for exercise, works wonders for coworkers and chains of command attitudes. I guess it seems more like an official plus for branding in company ordainment. Then it changes their thought process to accept it as a company asset. 😅