Help Charlotte Overvold with her rare neurological condition

Update:

Hi everyone, I want to say a big thank you, mahsi cho, merci beaucoup to all of our friends and family and everyone whose helped us through this difficult time. My hands don't work so good these days so I'll be doing a FB live video shortly and will share the video to Facebook. I will also be sharing videos I've taken throughout these past few yrs. I'm sorry I haven't been on FB it became too difficult to function and reach out.. I hope u can understand and I'll explain better in my video. This has been a hard time to go through but we're getting by the ups and downs together as a family. The best news is that so far there isn't permanent nerve damage and tests have shown no tumors or serious damage to my brain. Ive been working hard to get my mobility back through an intense physiotherapy program in Hull adopted from the Montreal FND program. They are a team made up of a physiotherapist, occupational therapist, and a specialized psychologist. Ive been very sick this past month and my ability to make it to my appts has been a challenge through out my recovery but they've kept me on because of my willingness to work hard at getting better. Ive been advised to recover more at home and get the rest of my tests done that my family doctor has been following closely before I return to physio if needed. I'm continuing to see my therapist weekly. I also had my first home visit/ meeting with a community support advocate for those with disabilities, who is helping me in eventually beginning volunteer work a few hrs a week. I don't qualify for disability benefits in Quebec so I'm hoping to try and work in some way in the future. I originally saw a brilliant chiropractor at Chiro Gatineau who helped advocate for me in getting the proper care I needed. They also helped ease my symptoms which helped give me mobility and relief from pain for a time. Contact Dr. Coté if ur in need of healing. I'm now on an experimental dose now of medications that can cause dangerous side effects but the pros outweight the cons and I had to say I understand the risk I am taking. Ive refused narcotic pain meds and now it would be too dangerous to take. Instead I'm taking a strong liquid anti inflammatory and childrens Tylenol. So far it's helped but now recently I've started to experience difficult and incredibly painful episodes that are debilitating and increasing left side weakness again. As well as short term paralysis in my hands mainly at night and in the morning. This has been quite painful and is lasting longer through the day like severe arthritis. I'm also experiencing similar episodes on my right side now. Ive also started having facial spasms when I smile, laugh or talk too much. It started on the left side but now is moving to the right side as well. With this I have to try and keep my energy for my daughter my partner and my day to day tasks. I got quite depressed for awhile when this began. I also realize I'm experiencing many stages of grief for the person I was and the future I pictured. But I'm grateful I get to plan for an amazing new future with my family. I want to reach out but it's been difficult and I hope by sharing this can help me in reconnecting to all my loved ones. Im also accepting im still in grief over my Dad's passing and losing our home and it's been hard to talk about but I know he's with me everyday watching over us and visiting and guiding me in my dreams. I miss him so much and I promised him I'd share my stories and our adventures. I'd like to say a very big thank you mahsi cho to my Uncle Bob Overvold and Auntie Lucy Ann Yakeleya for their incredible support over the yrs and helping us manage through such a difficult time. An incredibly kind and compassionate professional cleaner and multi-skilled entrepreneur Jessica Schingh-Pagé has helped deep clean our home with tasks and chores I had trouble keeping up with. Pls look her up if ur in Gatineau and need a professional clean. She's helped make our house a home again and we are so grateful.

My mom has traveled back and forth from Yellowknife to Gatineau to be by my side and help our family through this difficult journey. I'm so grateful to her for everything she's done to be the amazing mom she is. My Dah Rick Drover has also come to be by my side when I was at my worst to shine some of his incredible positivity, stories, and wisdom when I needed it most. Thinking of u Dah and miss u. My brother Chris also came during the holidays to help out. I was experiencing a lot of falls during this time and suffered a severe concussion and a black eye when I fainted and hit my head on our bedroom doorknob just before Christmas which made symptoms worse. Ive done my best to try and eat again but mostly its still needed to continue taking boost or liquid meal replacements. my choking is daily and still constant. But I've managed to put on weight again, yet lost 10lbs when I got very sick with a rare virus about a month ago. They said if I didn't keep trying to use my throat muscles by swallowing different textures I could lose the ability to do so. Ive also started going to the gym to build up strength and work on my ability to walk normally again. I'm not allowed to travel yet by airplane so these funds raised would help my family greatly so we can continue to be together. I'll explain more in my video. My hero, my love, my incredibly strong, loving and supportive partner Kevin Ryan has worked tirelessly to provide a healthy happy home that is safe and full of love and support for our lil family. I can't thank him enough for being my rock and my greatest advocate. In spit of having to take time off to help care for our daughter and help support me daily with appts and hospital visits he continues to be a solid foundation of encouragement and love. I would also like to thank his family for all of their support. Our daughter is an incredibly compassionate creative and intelligent lil girl who has had to be a big girl through so much. She wants to be a doctor when she grows up to help others like me get better. She excels in school and has been a positive leader and role model in her classes. Her teachers have noted her as gifted and to support her as much as we can which has been a joy to do. She's been in jiu-jitsu and shown a lot of heart and good sportsmanship but would like to try boxing next. She's in gymnastics which she loves. And its been encouraged by my physio team to have her in day camps so I can also have time to rest and heal as well. She loves Science and music and took the house down last summer with a cute violin duet in music camp. She gave up a week of music camp that she was originally excited for so she could stay by my side when I wasn't able to swallow food, to walk or get out of bed safely. She would lay with me during my episodes when I couldn't control my movements tell I was calm again and we'd play Barbie or just cuddle together. I lost the strength to sing her lullabies to her at bedtime. A goal I set through rehabilitation is to write a storybook of her northern lullaby and maybe share it with everyone. My other goal is to be able to play with her again like I use to, and lift her up safely, it's slowly starting to happen. We began being able to walk together again in the park. I remember when she said wow mama ur doing it! Look Papa she's doing it! And my next goal is to ride a bike with her. This yr she's signed up for day camp again and had fun in her first week at dinosaur camp thru Sportmax day camp program through Cegep. We'd like to continue to send her to day camp as she loves to learn and have fun. Her and her Papa have been my greatest strength, support, inspiration, and source of love thru this all. Mahsi cho merci beaucoup my family for being exactly who u are. Thank u everyone for ur continued support in anyway u can. I love u so much and I'm so grateful for u.

If you're able to kindly donate to our family, donations can be sent directly to our email at [adresse e-mail supprimée]

Original post:

Hello everyone, my name is Charlotte Overvold, I'm from Yellowknife, NWT. I live in Gatineau, QC with my partner Kevin Ryan and our 6 yr old daughter Océane.

Im sorry to say but I've become very sick these days.. but surrounded by my strong amazing family, together we have gone thru the tremendous ups and down of trying to understand what we're facing..

I was finally diagnosed with a rare neurological condition called FND Functional Neurological Disorder. I have an extraordinary debilitating aggressive form of it.. It's similar to Parkinsons and MS but isn't detected by modern brain scans and there is no known cure. What we understand so far is that its a disorder where the brain has trouble sending signals to the body. I'm sporadically experiencing tremors, muscle spasms and weakness in my whole left side that is moving into my right side now. Despite finally being able to swallow some foods again at times, I've continued to lose weight and muscle mass, mostly on my left side. My lowest weight now was 120 pds yesterday compared to the day before when I was 123 pds. I'm now at a steady 121 pds if I keep up with trying to eat. Recently they mentioned that among other disorders ALS is something that still needs to be ruled out.

Symptoms started in Feb when i couldnt swallow one day and had severe stomach pain. We thought things were taken care of after my colonoscopy and endoscopy and new meds were started but i still couldnt swallow and remain on Boost to this day.. then one day symptoms started in my left hand, my dominant hand, and came in the form of weakness, that quickly spread to my arm then my left leg and has since moved into my right. The weakness was accompanied by cramps, uncontrollable limb movement, spasms, muscle tightening.. eventually they started to get skinny, muscle atrophy (loss of muscle tissue).

Aug 10th, I had a family doctors appt. My doctor saw my hand shake, which happens during stress, he saw my left hand weakness and left leg weakness. The doc asked me to walk on my toes and then my heels and when I couldnt do either i looked up at the doctor and his mouth fell open for a second and i remember hearing the gasp we both made. He took quick action and got me an emergency appt with a neurologist and said i would need a brain scan.

When I met with the neurologist he only asked if I had migraines, asked me to squeeze his hands and asked me to walk. I didn't get to explain more then that I've had trouble swallowing and how dizzy I've been and he said, "your fine, it's just anxiety, stop getting up so fast." And ordered the M. Gravis bloodtest again. We were waiting on some bloodwork for M. Gravis since June.

I've been able to see an amazingly caring and professional throat, nose, mouth specialist who first diagnosed me with FND Functional Neurological Disorder.

My symptoms worsened and I've since added on to the numerous ambulance rides and visits by caring paramedics who at one time watched helplessly as my partner held me and encouraged me to stand back up ( like the specialist said to do) with all my might when my legs gave out, and thanks to his strength and positivity, i did.

And I've been fighting to keep walking and moving as much as I can since. But its hard and I now use a cane. There were also times I had to be placed in a wheelchair accompanied by pretty big tears.

My family doctor after hearing about my worsened condition made a plan to get me back to see the neurologist with a French explanation of my symptoms so I'm taken seriously. The doctors I've seen said it seems neurological and we've moved beyond "anxiety" as deemed by my neurologist. We just had to wait for a brainscan.

Dah, who never travels, came down for an emergency visit when I was at my weakest point and couldn't walk or move on my own anymore and couldn't swallow for 3 days. At this time I experienced visions of seeing ppl who past including my Dad and a dear family friend who recently past. I was put in the hospital for 3 days after dropping multiple times with uncontrollable tremors. I had an MRI brain scan that determined no tumors, which lead to the same neurologist i saw before to put me in the psychward for a half day to be evaluated. The psychologist was shocked and upset that I was put in there. My specialist warned me this could happen because of the stigma about my rare disorder being believed by some to be purely psychological. Which we now know isnt true but that it is a disfunction of the brain being able to send correct signals to the body. He released me to go home and be taken care of by family, although with my condition would have kept me in the hospital, but being home with family is more healing and reassuring. He has been an advocate to put a referral request along with my amazing specialist who first diagnosed me to try and get into a specialized program for FND in a Montreal hospital. Because I require physio and various therapies to try and help me hopefully get better. I also have an incredible Chiropractor who specializes in helping ppl with MS who also put a detailed supporting letter for my medical team to encourage brainscans and willing to support how he can in improving my health. I am 1 of 4 ppl in Gatineau with an extraordinary aggressive form of this rare disorder but i was the only one denied because of the same neurologist, who originally didnt test me properly during our first visit, put me in the psychward and then denied my two supported requests by my specialist and the psychologist to be sent. This has slowed my healing, excelerated my symptoms, and delayed my ability to get qualified proper treatment for my condition. Which was a sad and shocking display of ignorance and stigma of this condition. I've been encouraged to report the neurologist and various other doctors and nurses who had similar behavior.

When I was able to see my family doctor again, who first witnessed my symptoms of left side weakness, tremors, uncontrollable limbs, chirping, seizing, has since fast tracked me to another clinic an hr away that can help me get another brain scan EMG and see a new neurologist. We are waiting to hear when this will happen. As well as getting me seen by a dietetician and physio, which is underway. Since then I've gotten much worse but better in some ways. I'm on nerve meds that help give me mobility and control of my limbs again to some extent. But I've had to increase every few days.

The pain is on another level and I'm grateful to have the nerve meds work but soon they are going to possibly be at a max and I'll unfortunately may have worsening symptoms soon with out the relief I have today. That's why it was important to me to let u know whats going on while I can. I hope it doesn't get worse but somedays are really hard and some days are really good. I'm having increased episodes and now am starting to lose my memories and mobility again despite nerve meds.

Here is a brief explanation from the research given to me by my specialist:

Functional neurologic disorder (FND) refers to a neurological condition caused by changes in how brain networks work, rather than changes in the structure of the brain itself, as seen in many other neurological disorders. Physical symptoms of FND are genuine but cannot be explained by changes in the brain structure. The exact cause of FND is unknown.

FND can cause multiple symptoms that significantly interfere with how a person functions and copes with daily life. Symptoms of FND are not intentionally produced and can involve any part of the body. Symptoms may appear suddenly.

Brain imaging (like MRI and CT scans) and other neurological tests are often normal in a person with FND. However, research studies that have used functional neuroimaging and neurophysiology (both of which focus on how the brain works rather than what it looks like) have demonstrated changes in that the connections between different regions of the brain in people with FND. In FND, the brain is unable to send and receive signals properly. Additionally, the sense of agency or that one is controlling one’s own actions, is impaired. Many research studies have showed that people with FND have increased activity in limbic system, which deals with emotions and behaviors, resulting in problems with regulating emotion and responding to stress.

There are many types of FND, with a diverse mix and range of neurologic symptoms. For some people, symptoms are short-lived. In others, they may last for years.

The recovery from this condition is someone bleak when first looked at with a 40% chance of recovery and a 20% chance of being wheelchair bound.

Stigma in FND is higher than other neurological conditions, and affects quality of life and caregiver burden. Stigma affects the patient on intrapersonal, interpersonal and systemic levels – leading to shame, harm and neglect. Few interventions exist to reduce stigma in FND.

But we are hopeful and believe in the power of positivity. Yet even with my amazing familys incredible positivity, these days I'm getting pretty tired as I fight thru increased symptoms with less relief. This is why I wanted to reach out to you all, while I still can use my hands. I have to keep my strength and stress down as much as possible too avoid symptoms, but I'll try my best to reconnect how ever I can.

I also want to give a huge shout out to our amazing daughter, Océane, whose resiliency thru all of this is incredibly inspiring. She has experienced more than any child should but is always there to help no matter what. She's been my cheerleader along side her Papa in given me the strength and encouragement to fight thru all of this with love, positivity, and laughter. Although there's been many tears along the way. A lil girl shouldn't have to learn how to call 911. She shouldnt have to understand all these big words or how hospitals and ambulances work. But she does it all with a smile and saying it's ok I don't have to be sorry she knows I'm sick and I'm always her Mama. She fills my life with sunshine and stickers and imagination that takes us away for many needed moments.

She deserved an amazing birthday surrounded by family and friends, which we put on thanks to the help and compassion from the staff at a playcenter in Hull who made sure she had an unforgettable day.

My partner Kevin has always been and continues to be my rock, my safe place, and an incredible source of love, compassion, and strength thru it all. His encouragement and ability to make me laugh even on our hardest days when I think the pain is just too much gives me enough courage to believe I can and we can get thru this together as a family. I can't thank him enough for not only providing for us thru his hardwork but by always remaining to be the excellent father, partner, roofer, and man that I feel in love with.

It meant so much to have my Dah come visit for the few weeks we got to be together. His wisdom and ability to make everyday a good day was so needed. It was also in the nick of time when I was at my weakest. He saw me thru tell my mom could be by my side as well and they helped lift us all up in a way I can't even put into words.

I really want to thank my Ma our Kookum most of all who has had to take on the brunt of this illness and what it's done to her daughter. Her strength is truly like no other, as Dah reassured me she would be. It's true. My Ma has come to be by my side many times thru this illness and helps to not only hold me up but my family and home as well. She has a fire in her that is powerful and inspiring. I feel myself become whole again as the person I always was deep down and am meant to be thanks to her unwavering encouragement to believe in myself. She is always by my side to help in any way. She is an important Elder who helps so many in our community, along side my Dah, but has taken on her Matriarchal responsibilities of helping her daughter and granddaughter and our family thru the toughest of times. Ma shows no fear thru all of this and it's given me more strength then ever before. We've evolved in our time together and now we're facing the next steps together with our family.

I've been encouraged to exercise to build and keep muscle. Ive picked up Tai Chi and Yoga which has helped greatly. Ive also been encouraged to create art again to not only ease my mind but to keep my hands mobile. As an artist Art will be my healer once again. And I hope to maybe create enough in a way that can help bring in support, as this illness has been a tremendous expense on our family. Having to pay for my increasing medications some of which can cost up to 200. As well as having to live on Boost since February which costs $20 for 4 everyday. My partner having to take multiple times off work to help me thru the daily tasks I use to do has been tough.

As well as having my parents come on multiple extended emergency visits to help take care of me and my family. Has all added up to amounts that aren't sustainable. We have decided that starting a Go Fund Me would be in our best interest. The funds raised will cover the costs we have already had to give to this illness and all that it has taken from us financially. It will also ensure we will be able to travel back home for one visit as a family. The funds raised will also help me to continue to get the many forms of care I still and will desperately need, while lessening the financial burden we have by trying to be and stay together thru this illness. We hope that our GoFundMe can be shared in our communities and also bring awareness to this rare condition. This wasn't an easy choice to make. Any help you can provide is greatly appreciated.

Thank you everyone for your time in reading all of this. I know it's a lot but it was important to share with u all whats been happening. I'm going to be sharing our adventures in future posts. And I please ask for u all to reach out to my Ma, Dah, and my partner Kevin as we can all use the encouragement these days.

Love you all so much and I have one last request. Please be kind through your day and do something that u were afraid to do before, what ever the reason. Make art, write poetry, move your body, dance, sing, laugh, be silly, be brave. Life is so precious and can change in an instant. Live fearlessly and fully. And if you have a smudge bowl, can you please light it. Mahsi cho