Living With Parkinson's Meetup: June 2024 - Apathy and Anxiety 

Thanks for your comment. It is interesting how compelling dreams can be in the context of waking apathy. You aren't alone in this! We're here for you.

In this meetup, five of the panelists are still working. The other panelists have some form of government insurance.

A few months back Heather decided to step away from being a member of this panel so she could refocus. Along with Kat Hill, Heather features in The Parkinson's Podcast Unfiltered, which you can find on our RU-vid homepage and on many podcast apps.

Hi y’all! I was diagnosed in 1998 when I was 38. Have bilateral dbs. Did it early like 2000 and 2002. Currently, I am having issues with chronic constipation and in order to pass anything I have to do an enema every other day usually. My dear husband does the deed for me and I have to have my meals planned and eat in layers because i have become aware of my food layers. Btw, I am a completely transparent person, so please forgive my complete open and honest personality. The enemas have been happening for over a year at least. Every day you can find me on the toilet thanking God for helping me 1.)not miss the toilet when I go to sit on it 2.) thanking God for helping me get the train down the track and out of the station. Sometimes I am sure that my neighbors can hear me. In the last year I have had a breakdown at least once a month. It is like turbocharged menopause , crying, sobbing, like I just had a pet die. I am a spiritual person and thank God for helping me get up every morning and try to make it the best day ever. That sounds corny I know. Also, my throat is starting to close and I am starting to watch very closely to take tiny bites for fear of choking. My voice is a whisper now and when I speak I have to make myself yell, at least it feels like I am screaming and my face looks like I am yelling. Service people give me the strangest looks. I realized that my wire that goes up the left side of my neck is HUGEand I wear scarves everyday and it isn’t as noticeable. I feel that I need to tell everyone that I speak to that I have PD and apologize for my speech. I carry that card around that tells whoever that I am not inebriated, it is PD. On the days I cannot speak I also cannot write . It is so bad that I cannot even read it and just forget my typing skills! I learn and relearn about all this tech stuff (my phone is a major issue). I want to thank y’all for this forum. I would love to share more. I tend to get excited about my particular PD and I love to explain PD to people who know nothing about it. I do get upset that we as pd people have to have 2 doctors for each symptom, like I need 2 pc doctors, because I am finding that the doctors that I use do not know anything about my disease and I want to punch them in their throats. My patience is non existent it seems to me. My friends and relatives say it isn’t true, that I am so sweet and they admire how I handle my pain and this disease. I can laugh about not being able to just crack up in a big belly laugh and this is where the saying laughter is the best medicine. On the rare occasions that I do have a big spontaneous laugh I feel so much better physically, emotionally, and mentally. Oh I am also a heavy sweater. I wake up drenched every morning. My cat is the only living being that wants to be around me. I am so greatful for my care giver, my husband, except when we get in an argument and I don’t want his help but I HAVE to accept his help. PD has taught me to be humble and I see the world in a different way. I am aware that there are people who don’t understand my PD and think I am just taking advantage of my people’s good nature. They don’t realize how hard it is to NOT show the pain that is constant and to consciously think left right left as I walk and I have to watch out and not fall when I go through a doorway because my brain says “go” and my feet say “no!” I actually got stuck in my eye dr’s chair and froze completely because I was kind of upset that the nurse told me my son could come in the exam room with me. I was with my husband 😮 and he isn’t one to care about his skin’s condition. In other words, my wrinkles have taken residence around m my mouth and down my chin like a puppet. I promise that it happened overnight! I have pics that I took a year ago and ones that people have sneaked in that are more recent and I am soooo wrinkly! I will not bend over my husband any more because I think I would scare him to death. I am having more social anxiety everyday and I know stress causes wrinkles and not laughing is also stressful and not being able to be funny because no one can understand me. K have almost convinced my husband that he is losing his hearing and my speech is just a little low and slurred. He is going deaf. Again thank y’all for this forum. If I were speaking to my husband I would show this to him. ❤

Thanks for raising this concern. It is not talked about enough: sometimes DBS hardware can lead to some ongoing discomfort. Many people who have hardware related discomfort tell us it doesn't outweigh the benefits of the treatment, but it's important to talk about all aspects of ANY treatment, so thanks again for your comment.