Working as a Listener with 7 Cups has been extremely rewarding for me, as well as eye opening. I am a Listener on a form of online crisis line for anyone who wants to anonymously chat about anything on their mind that is bothering them.
I've spoken to others just as anxious as me. Those that can't believe a boy doesn't want to be with them any longer (and vice-versa). Those that have no money, no food, and are sleeping on someone's couch. I've chatted with the abused, the lonely, the strange, the perverted, the university student who is struggling to meet the expectations of their parents. The dark lonely person who answers in only one word replies to keep me guessing like a game. I've also helped a great deal of people in my short tenure. Here are some of my feedback reviews:
Writing this blog to connect with others who are also lost or suffering on their life's journey was the start of allowing myself the freedom to be vulnerable and honest with myself. I struggled and fought hard against believing what others were showing me with a mirror. Coming to terms with the reality of who I am, owning up to my weaknesses while trying to still celebrate small my successes has been a giant kick in the pants. It has left me stripped down and laid bare for all to see now that my mental emotions are no longer pent up and hidden on the inside. They are in full physical view for all to see. My tremor, my neurologists tell me, are of my own making and not that of Parkinson's or any other "disease." My brain was pushed to the breaking point (as stubborn as I was to get things figured out and done) and I basically broke it. Okay, now what do I do? Where do I go? How do I fix this? In the meantime, its all about healing. My mind, body, spirit, soul. Be kind to myself. Ask others to be kind to me. Try to navigate help from the medical profession to find out how to return to a whole functioning adult human again. First step: Cognitive Behavioral Therapy...... along with sleep, exercise, and nutrition.
Since no one has taken any functional scans of my brain off of meds since 2013, I hope they are right. Beginning to titrate down once again starting today. 2 Carbidopa/levodopa tablets every 6 hours. Every 5 days drop each dose by 1/2 tab. Return to the doctor in 3 weeks. When I get too low I can't walk any longer. Doctor says I can't die from getting off my meds. Do I have any choice but to trust? Going back to Dr. Deeb at Shands Gainesville in 4 days for his final opinion.
In the meantime, I will lean on my colleagues at 7 Cups to help me through. There are hundreds of fellow Listeners who are prepared to lend me an empathetic ear as I go through this final struggle to regain my ability to cope and compose myself. The doctors say I should not tremor once off the meds. Cross your fingers they are right.
Have you ever done something for someone and it ended up being the best present to yourself?
Recently I began volunteering as a Listener with 7 Cups of Tea, a community of thousands dedicated to improving Mental Health around the world, one anonymous chat at a time. On the site you'll find a plethora of resources including a guided "Growth Path" with tasks that make you think, forums, group chats, one-on-one chat sessions with your own Listener that is volunteering to man the chat (available 24 hours / 7 days a week). Make friends around the world. It magic and its free.
7 Cups is perfect for those that feel they need to chat with someone but your resources are tight. I stumbled upon them and was invited to become a Listener. Helping others on their life journey allows me to pay-it-forward while it hones my listening skills. I love it.
Feel free to come try it. All you have to have is the need to chat privately with someone who will lend you an ear. The Listeners have no idea who you are and cannot ID or track where you're from. Here's the link: https://www.7cups.com/19598550. They are on Facebook at https://www.facebook.com/7CupsOfTea.
To strong mental health!
This is getting better and better. Found a US Based Association for doctors and students. The International Association of Functional Neurology and Rehabilitation (IAFNR) at https://iafnr.org/
IAFNR was formed in 2010 to promote, protect and advance interdisciplinary scientific and clinical Functional Neurology and Rehabilitation Sciences at the national and international levels.
We remain focused on practical applications that will improve the health of suffering people, prevent illness and lower healthcare costs.
The site features research, conferences, courses, webinars and an online doctor referral service.
Their inaugural e-newsletter was published in April 2018. You can find it here: https://iafnr.org/wp-content/uploads/2018/04/IAFNR-April-2018-reduced-file-size.pdf
International Association of Functional Neurology and Rehabilitation
2487 S. Gilbert Rd #106-116
Gilbert, AZ 85295
In my almost 10 year journey since my first symptom sent me to the PCP in January 2009, my rollercoaster odyssey for the next five years to find a diagnosis, and then finally being told I have Early Onset Parkinsons Disease in November 2013, I never heard or came across the term "FUNCTIONAL NEUROLOGICAL DISORDER".
Luckily for me, the introduction came just in time. I learned about FND at the University of Florida Shands Hospital Movement Disorder and Neurorestorative Dept during an evaluation for Deep Brain Stimulation Surgery to implant a device that as a PD patient would help to stop my tremors and whole body Dystonia. I went in expecting a date for surgery; and left there with a change in my life trajectory. WOW!!! Keep reading......
All it took my new neurologist to determine I most likely don't have PD (or if I do its a mild Stage 1) was to read the results of the one hour of PT and one hour of OT plus he scheduled me for BEFORE my eval (in conjunction with his own manual test results). I had not had either therapy since 2014 and that was the LSVT BIG program I took for balance. These two appointments prior to the doctor seeing me were KEY!!! I had three other surgical evals prior to this one at two other major hospitals and neither began with PT or OT. Brilliant move!!!!
I arrive at Shands off my medications for almost 24 hours. I was in full body Dystonia. Stiff as a board and unable to walk. I went to my PT appointment in a wheelchair. After my PT stretched all of my limb muscles and started me on warm up exercises, she proceeded to give me tests (which I remember from the BIG evaluation). I was having so much fun, my body returned to supple and flexible. At the end of the hour, I threw my heavy overnight bag over my shoulder and promptly walked into the waiting room at a normal walking pace. My muscles were now awake.
My next appointment was OT. A brilliant OT measured my fine motor skills and promptly determined there was something else going on here. She asked me if I ever experienced trauma. So I proceeded to list the ones I could remember - after 30 minutes she had to stop me and asked, "You ARE seeing someone to talk about all of this, aren't you?" Of course, I said, "No, why?" I didn't notice until hindsight that while I was discussing them, my body became completely relaxed and all tremor was gone for good..... for the remainder of that day. I didn't have any idea in that moment that my diagnosis was about to change.
My next and final stop was my to meet my new neurologist who put me through the test paces (I am oh so used to) and then I sat down to schedule a date for my surgery and instead was told that my brain might have trouble initially understanding this, but he suspects I do not have PD at all. He thinks I have FUNCTIONAL NEUROLOGICAL DISORDER. In panic, I said, "What is that????" (Praying it wasn't worse than what I have now. Wait, I have something else? How could this be?) My ears heard him and my brain sent out an SOS. Stop the presses. WHAT??? After an explanation from my doctor (quickly) that FND is treatable and most likely for me curable, I burst out in a guttural cry. The relief was palpable. We proceeded to finish speaking with me wailing because I couldn't stop my reaction. He went on to explain FND, which I researched when I got home. His treatment schedule for me.......Titrate OFF of my meds on a slow schedule. Get my Carbidopa/Levodopa down from 18 per day to 3 then off the other meds, if I can. Three PT and three OT appointments per week and talk therapy twice a week. It can take between 4-12 months depending on the patient. WOW!! Are you kidding me?
Fast forward 11 days to today. I have titrated down to 9 dopamine tabs per day (cut in half) and I have not felt this well in a really long time. I woke up this morning with no sign of tremor even though my last dose was 7 hours ago. I SLEEP!!! Last night I went to bed at 10:30pm and did not wake up until 5:30 am when my dog signaled he needed to be let out. I also took two naps yesterday and one already today. These are the welcome first steps to resolving my dopamine induced SLEEP DEPRIVATION. My mind is surprisingly and obviously to everyone around me - very clear. I am back to making intelligent decisions in a timely manner. I am much less "reactive" to what I am being told. I automatically returned to listening to what someone says and then responding. I am not an emotional mess. In fact, I have my fighting spirit back. I can see the masking leaving my face. I can easily go 6 hours between doses; prior to this I couldn't even make it to 4 (I was "on" for only maybe 2 hours at time with high velocity tremor in between that was really affecting my life every day). I am making myself good meals to eat; not grabbing something quickly or not eating at all because I couldn't make a decision. I feel more each day like the "normal" person I used to be. My brain is back!!!!!
My body is ready to come back, as well. I started doing push ups (didn't have strength to hold one 10 days ago) and sit ups and stretches. Getting prepared for much needed PT and OT. I always had a firm, slim body. All the weakness and lack of motivation to exercise has made me loose and jiggly. Luckily that's not going to be too hard to fix. I just need to put forth the effort. Once my muscles are tight once again, it should help stop the tremor (which should also subside as soon as I work out the PTSD from a life filled with trauma). I am aware that I carry lasting memories that I recall almost every day. Some much stronger than others but I would easily tell you I suffer from PTSD - there is no doubt. FND has to do with a disconnect in your nervous system. If you know me, this would have been a "no-brainer" to diagnose if you were aware of FND.
Here are some very vital resources I am learning from and you can too. I will be back with updates and more information. We need to spread the word: FND AND PD MIRROR EACH OTHER SO CLOSELY THAT THEY CAN EASILY BE DIAGNOSED IN PLACE OF EACH OTHER. There are specific things that belong to each, but you have to look closely. PD lives in the motor region in your brain; FND lives in the autonomic region (reactionary). If you don't have PD, like they suspect I do not, then - like me - you can come "in" and "out" of PD symptoms almost at will. I do not have consistent PD. It can be almost undetectable and catatonic - in a large swing from nothing to severe. I find I can do that based upon my emotions. If I am calm and stress free OR if my thoughts are re-directed (like when I am in public), the PD symptoms are the least noticeable. My tremors are high when I am the most stressed or tired or receive information that I don't want to hear or am in a situation I don't want to be. Any time my brain goes on FIGHT OR FLIGHT, my PD-like symptoms are at their worst. My new doctor promptly annouced. "If you really had PD, it would NOT be possible to do that." What a smart cookie!!! I encourage you to do some research and ask your doctor if this could be a possibility for you.
RESOURCES I HAVE FOUND: (Note: I am not a medical professional so cannot make comment on or warranty or recommend anything written on any of these sites. I just found them myself.)
Let me know if you come across good resources to share. This is exciting news for me and I hope for someone you love. In some cases, there is an alternative to PD. My intuition tells me this doctor nailed it on the head (no pun intended) and lucky found me out before surgery. I am forever grateful.
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"Lisa Chalker is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."