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Sat, Apr 13 3:48pm · Functional Neurological Disorder in Brain & Nervous System

Hi @marycoy. I also have FND and I have been told and have come to believe as a result of my treatment that it stems from a central sensitization issue and psychological issues are NOT the root cause. Mayo Clinic successfully treats patients with FND as a central sensitization syndrome within their 3 week pain rehabilitation program. The same protocols used to address chronic pain also work for other FND symptoms. It has changed my life and for that reason I highly recommend the program. If you have not already viewed Dr. Sletten's video that explains central sensitization, you can view it at https://www.youtube.com/watch?v=8defN4iIbho. Dr. Sletten is located at Mayo Clinic in Florida, but the same program is available at Mayo Clinic in Rochester and Arizona. If your granddaughter has not already had a consult at one of Mayo Clinic's Pain Rehabilitation Centers, it may be valuable for her to request a consult with one of the Pain Rehabilitation Center teams. She can self-refer to request an appointment if her local physicians are not familiar with this program, or not willing to make the referral for her. The link to the webpage is https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center.

Tue, Feb 26 7:07pm · Functional Neurological Disorder in Brain & Nervous System

@amber3212, one more bit of information since you are looking for people who to talk to who 'get it'… there are 2 Facebook groups for people with FND and/or their caregivers. The International group is at https://www.facebook.com/groups/FunctionalDisorder/ and there is a US/Canada group at https://www.facebook.com/groups/1581750502109806/.

Tue, Feb 26 6:30pm · Functional Neurological Disorder in Brain & Nervous System

Hi @amber3212 and @uldiver. I was diagnosed with functional movement disorder (FMD) which is a subset of FND after living with symptoms for many years. This is a tough diagnosis to wrap ones head around. FND and FMD are no longer considered to be "all in your head" (unless you consider that the brain is in your head!). Rather FND is due to a problem with the functioning of the nervous system, and based on recent research it is now thought by many neurologists to be the result of the brain’s inability to send and receive signals properly, rather than disease. Trauma is sometimes a trigger, but not always. Stress does seem to make symptoms worse…so that's the psychogenic part. But as my neurologist explained "the brain has hardware and software…your brain's hardware is fine but the software is not." I was thrilled when he told me there is treatment to 'retrain the brain'.

I'm not sure where you live but Stanford (California), Cleveland Clinic (Ohio), University of Louisville/Frazier Rehabilitation Hospital (KY), Mayo Clinic (Minnesota, Florida and Arizona), and The Recovery Project (Michigan) all have specialty clinics with special FMD programs. Other places like Mass Medical in Boston treat FMD and FND as well, and there are FND research studies being done there.

After I was diagnosed I found my way to 2 very good websites and a Facebook support group – all of which greatly helped me understand and eventually accept that the diagnosis is real for me. I highly recommend looking at the information at these website links if f you haven't already found you way to there: https://fndhope.org/ and https://www.neurosymptoms.org/.

I hope this helps.

Dec 5, 2018 · Fragrances and Asthma / Allergies in Lung Health

@jenniferhunter you are so right…so many ads on network television tout fragranced products contribute to the TV revenue. But thinking about the "how to get the word out" question, after reading your post just now, made the word "celebrity" pop into mind. Parkinson's disease has Michael J. Fox, for example. So I googled "CELEBRITIES WITH ASTHMA" and found a long list at https://getasthmahelp.org/famous-people.aspx. Not sure where to go from there, though.

Dec 5, 2018 · Fragrances and Asthma / Allergies in Lung Health

@jenniferhunter I stand corrected regarding the absence of information about fragrances and the American Lung Association website information. I looked through their website more closely this morning. It's not easy to trip across but I did find brief mention of fragrances on their employee wellness and at-home pages at https://www.lung.org/support-and-community/corporate-wellness/create-a-lung-healthy-work.html and https://www.lung.org/our-initiatives/healthy-air/indoor/at-home/keep-pollution-out-home.html. The problem remains that a person really has to be intentionally seeking information on their website, or any website…however, the general public that isn't affected by fragrances and other chemicals probably wouldn't likely be motivated to search for information without good reason. I don't recall ever seeing a public service announcement on TV about this, although a PSA might be a more passive way to educate the public. Maybe those of us who are affected buy sensitivities to fragrances and other chemicals need to let the American Lung Association and other interested organizations know that we need their help to get the word out to the general public.

Dec 3, 2018 · Fragrances and Asthma / Allergies in Lung Health

A while back I reached out to the American Lung Association to ask about any programs they might have to create awareness about fragrance sensitivities after reading through their website and not finding anything about this. Fragrances is not even included on their list of triggers in their Healthy Air initiative. I was interested in volunteering to help create awareness about fragrances. However, their response was only a very short and disappointing "thank you for reaching out to the American Lung Association…to make a donation, please use this link". I checked their website again today, and fragrance is still absent from their initiatives and concerns…despite the fact that more fragranced products are on the market than ever before.

Dec 2, 2018 · Fragrances and Asthma / Allergies in Lung Health

@jenniferhunter I once asked my PCP how I could best avoid these situations in advance of an outpatient test I was scheduled to undergo at a local hospital (where I knew the restroms were heavily fragranced). The advice was to call the hospital's Risk Management Dept before the day of the test to request special accommodations. That method worked like a charm! The hospital removed the fragrance canister from one restroom, the ones nearest to the area where I would be. I did the same thing in advance of a surgical procedure, and the hospital was very accommodating. In that situation a CNA assigned to my care, who arrived for her shift freshly showered with a strongly fragranced bath product, was made to switch patient assignments with another CNA. We shouldn't even have to take these steps, but working thru Risk Management ahead of time seems to work to keep us safe. My record at the hospital was permanently flagged regarding my fragrance sensitivity.

Dec 2, 2018 · Fragrances and Asthma / Allergies in Lung Health

I am sensitive to heavily fragranced products too. I wish the general public without these sensitivities could be more considerate of those who do suffer from this, but I write it off to ignorance. What I don't understand is why some doctors' offices choose use fragrance plug-ins and in their waiting rooms and small-sized patient restrooms. Health care professionals should know better.