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.
Great news to share. My disability was finally approved. Thank you Sen. Marco Rubio for your help when I needed it most. Yesterday I was blessed by Florida Blue with full health coverage and my doctors at the University of Miami have swung open the doors to start the surgery process with my first appt on 9/7. There is a bright light showing me the way out of this tunnel. Thank you for your love, unwavering support and prayers. My guardian angels never sleep.
Have Parkinsons or Are You a Caregiver? Looking for an Online Support Group that Really Works? Check Out MyParkinsonsTeam.com
As you know I've had Parkinson's Disease for 8 years and counting. I have subscribed to and browsed nearly 100 Parkinson's related websites, support groups, and blogs to read up on the latest treatments, funding, research and to listen carefully to how other people, just like me, cope with Parkinson's every day.
Boy, did I find a treasure. You must check it out. I'm not sure how I came across MyParkinsonsTeam.com, but I am so pleased I did. This is not your ordinary Support Group. Its the design that really makes this one work.
Typically a Support Site / Group will allow one member to post a question or comment and everyone responds. Its a bit interactive, but you don't know other member's STORY. When you sign up with MyParkinsonsTeam.com, you start your own profile page that is the most individually comprehensive profile I have reviewed. In your profile page you get to tell everyone your "story" in your own words. You share with others your medications and treatments (what works and what doesn't). You list YOUR personal PD medical team; you can also recommend them or comment on their services. Your profile also includes relationship status and you can participate in a Q&A section with guided questions to answer. I felt right at home immediately.
MyParkinsonsTeam.com was designed for individuals to meet other individuals that are either in their local area (perfect for meeting other PD journey men and woman you didn't know lived close by for support) or have your similar symptom pattern or treatment regimen. Once you find someone who fits the profile of someone you would like to have on your personal "Support Team", you simply add them at the touch of a button and write them an introductory note.
I've only been a member for about a week and I already have a "team" built of 13 like-minded PDers. Although I love my PD circle to be eclectic, I do lean towards the more active, well rounded, fiercely independent survivor who is doing everything they need to do to live with PD successfully and encourage others to do the same. I can hardly believe the wonderful people living with PD I've met so far from around the US. We chat one-on-one, we can meet locally for a cup of coffee, you can write out questions for your "team" to answer, we swap information on what works best, and I have come to look forward to connecting with members of my team on a daily basis. It is not a chore; it is similar to your own PD family you build yourself.
I very highly recommend this PD Support Site. I can easily say its in my Top 3 of all time. Check it out and sign yourself up at www.MyParkinsonsTeam.com. You will thank me later.
Here is my Personal Profile I set up on MyParkinsonsTeam.com. Feel free to add me to your team and let me know what you think of this site.
If you shop at AMAZON OR EBAY would you do this for me? It's easy. You won't notice any difference. The change just takes you through their invisible portal and a portion of each of your purchases goes to the Michael J Fox Foundation. THANK YOU!!!!
Click the pictures below to get easy instructions on how to set your accounts up to have a small amount of each purchase you make donated to the Michael J Fox Foundation for Parkinson's Research!! I won't cost you anything extra. And you will help millions just like me.
Hi everyone! Exciting news to share...... I have been invited to be a guest on The Parkinson's Radio Hour here in South Florida on Thursday, February 25th from 6-7pm on AM station 1470. Its a 50,000 megawatt station that broadcasts to a population of more than 6,000,000 people. (Not scary at all!)
The interview topic is "Issues and Solutions for Early On-Set Parkinson Disease" and I will be interviewed by host, Jeff Dowd, along with University of Miami Movement Disorder Neurologist, Dr. Henry Moore. My doctors are part of the same U of M system, coincidentally.
I was recommended to the show's producer. The person who recommended me told them that I live with PD with a positive attitude and that I inspire others with and without PD. I have no idea who the person is but thank you for your kind words and I am so happy that you are inspired by me or my story. That is my mission, for sure. To make sure that all who don't have PD appreciate the stillness they don't even know they possess and to make sure that all who do have PD seek out the forms of treatment they need and that work for them. There are so many resources today there is no reason at all to suffer. If you are suffering with it or know someone who is, their mind is playing tricks with them and they don't realize there is a way out. It is up to you as their friend or caregiver to get them the help they need. Remember that when I slip back "into" Parkinson's that I don't realize that it has happened. I need my husband to say "its time" to see my doctor for a tune-up of my medications or to check my progress. He can see when I'm becoming lost; I can't - and neither can your friend or loved one. I'm hoping that my story helps just one person to be better, feel better, live better. Then this journey I've been on has been worth it.
If you can't listen in, the show is available afterwards on podcast. I will get you that address. This show was aired on a different station and those past programs are available at http://wbzt.iheart.com/media/podcast-parkinsons-radio-hour-parkinsonsradiohour/. Wish me luck and listen in if you can.
I learned through the advocate given to me by Partners In Parkinsons, Maggie Barnett, how important exercise is in delaying the progression of Parkinson's Disease in the brain. She strongly recommended that I research the LSVT Therapy (Lee Silverman Voice Treatment) BIG Program and find a PT clinician in my area now while I'm still in the "early to mid" stage of the disease. She advised me that the program - developed in 1987 - has a proven track record of helping to retard PD and as a bonus I can put the techniques I learn in my "toolbox" to use for the rest of my life.
I did my homework online and with my insurance company. Online there are incredible videos on You Tube of before and after program results. I was stunned. Older patients barely walking nto the clinic practically jog out 4 weeks later (the length of the program). How could that be? I called my insurance company and found out they cover 100%. I'm in!!!
Through the LSVT Global website I found a few program certified PTs in my area and settled on HealthSouth Rehab. There I met Erica Leiva, my amazing PT friend. For 4 weeks she tested me, put me through my exercises, challenged me to balancing acts NORMAL people can't do(!), and made me smile every morning for 4 weeks. She improved my balance by a good 50% and counting. I made her stretch and learn to count to 10 while gabbing the whole time. (Was that 10 or 15? Who cares 😄). We had fun and I stopped being dizzy when I sat up in the morning; I can close my eyes in the shower without falling over; and I annoyingly test all my friends and family to make sure they improve their balance into old age. Erica has made me a crazed advocate for the LSVT Program. And I highly recommend it to any and all PD patients. Trust me, you need this program just to affirm you're not crazy. It really is your brain playing tricks. But you can fight back and reverse the effects. It really works. Thanks Erica.
Well I made good use of my time while I waited for the sun to come up and created a "One Face Of Parkinson's Disease" Group site on Facebook.
Facebook is a closed group for my privacy but if you'd like to follow me an you're not an invited member email me through the comment form.
Do you need support?
Find us on Facebook at:
"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
Connect with me online:
"Lisa Vullo 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."