The Motor Reprogramming Program for Functional Movement Disorders in Kentucky

[Jesdue]

I see there's a clinic for FND in Kentucky that has a week-long inpatient rehab program. Has anyone done this? All the local doctors (northern Virginia) are clueless. My neurologist straight up told me all I can do is physical therapy. I'm actually starting a special neurological PT next week at INOVA Fairfax Hospital.

My neurologist said I'd need my primary care to refer me for the Kentucky place but I should try the PT here first. I've been doing PT for like seven months but maybe the neurological one will be better? Is anyone familiar with the referral process for the Kentucky place? I imagine Medicaid wouldn't pay for it but I figure it's worth a shot.

[pickleweed]

I haven't gone to the Frazier Rehab clinic in Kentucky, but I paid $49 to watch an online course about Frazier's FMD program: louisville.edu/medicine/cme...

It was worth the $49. I think the online course took me about 6 hours to watch.

The neurological PT is more likely to be effective than standard PT. I hope that your neurological PT knows that FND/FMD is also a mental disorder, often believed to involve dissociation or disassociation between the numerous neurons/parts of the brain.

[Tewa in reply to pickleweed]

Hi Pickleweed. I have been diagnosed with FND and Mylagic Encephlomyletis. I live in Virginia. No dr has mentioned any programs such as the one you describe at INOVA Fairfax Hospital, not even my neuro at UVA. Can you tell me what Neurological PT is and has it helped you? I have had swallowing and speech problems for over 8 years in addition to all of the other symptoms of M.E. I can no longer speak and barely swallow. Have had extensive ENT testing and Dysphaghia, Dysarthis and Anarthia is documented as a physical/neurological issue.

Any information would be appreciated as I am frustrated and not getting enough help.

Thank you.

[Jesdue in reply to Tewa]

My first appointment is Tuesday, so I have no idea what it's like or if it'll work. I'll let you know though. I was referred to neurologic PT after being kicked out of several other PTs for being too big a fall risk. Maybe you can call INOVA Fairfax Hospital and ask about it?

[Tewa in reply to Jesdue]

Thank you for your response. With M.E. I cannot do regular PT as exertion, any, exertion causes Post Exertional Neuro-Immune Exhaustion. I have tried electrical stimulation for bladder incontinence and it is too over-stimulating, so don' t know about tolerating Neurological PT. I did go on-line and get contact info for INOVA. It is out-pt therapy and I live too far away to be able to travel there regularly. Transportation is a big problem for me. I did message my neuro at UVA and asked him about this. Maybe this therapy offered closer to where I live.

I hope it helps you. I understand how overwhelming it is to be do incapacitated and not to be getting much help.

So sorry to hear that. They dismiss my symptoms and I don't have a mental health issue. ..but most drs believe that FND and even M.E. are psychosomatic. I feel for you as you are being dismissed...and those with MH issues also become physically ill!

Take care.

[Jesdue in reply to Tewa]

I was inpatient at Fairfax last month and PT came to my room. But now I'm supposed to do outpatient. My mom can drive me cuz we have a ramp van and I have a scooter, but if it were a problem I think Medicaid would arrange handicap transportation. Do you have Medicaid?

I'm really at a loss if this PT dosent help cuz my neurologist says there's nothing else they can do about my FND.

[Tewa in reply to Jesdue]

I have Medicare, not Medicaid. The town where I live has no transportation in or out of town. I have no family to help me. I do have a scooter to get around town and go to the grocery store, bank, etc. Wish I could still drive.

My neuro has offered no treatments, and ME has no cure or no treatments either. I did send a message to him about INOVA and Frazier in Kentucky. May be he can help other patients with FND.

I hope this treatment will help you.

[Jesdue in reply to Tewa]

I can't drive either because I'm dizzy all the time, but luckily I live with my parents. I find I'm exhausted all the time and whenever I try to get out of my wheelchair or scooter I fall. I'll definitely let you know how Neuro PT goes. It might be a total bust but I want to go into it with an open mind.

[Tewa in reply to Jesdue]

Sorry to hear that you cannot drive. You sound strong in yourself and very determined. I am sending you support. Those of us with these difficult to diagnose and treat illnesses have to be advocates and warriors for ourselves. We have all been through so much !

[Tewa in reply to Tewa]

Also, I am so grateful to you for sharing about the Neurological PT. I knew nothing about it. You have given me some hope. Thank You!

[pickleweed in reply to Tewa]

Hi Tewa. Try this: Use the voice recorder on your smartphone (or any other voice recorder) to record a soothing, hypnotic message to yourself telling yourself to increase your daily activity level by some small, non-threatening amount. As an example, if you felt that you were staying in bed too long by staying in bed until noon, you could create a recording like "Tomorrow you will wake up by 11:50 a.m. You will open your eyes and get out of bed at 11:50 a.m. or sooner. You will have more energy at that time than usual...." Try to make the recording last more than 1 minute. Listen to the recording every day when you are lying in bed. Then, make yourself do that activity every day for at least a week. If you have some days when you can't do it, don't give up. Once you've mastered this increase in activity, try to increase your activity by some small amount again. This recommendation on graded (slow) increases in activity comes from neurosymptoms.org/#/physio-... and jnnp.bmj.com/content/suppl/...

[Tewa in reply to pickleweed]

Interesting suggestion. Unfortunately with M. E. this would be be recommended. Pts with M.E. have to do the opposite and pay attention to any use of energy, pacing self, using the spoon theory...not doing so results in more crashes and months in bed. Sleep is disturbed every night and it is unrefreshing sleep, so in the event I can sleep until noon(unlikely, but still) I would do it. Seems all who have M.E. had to learn the hard way. M.E>. is a system , very complex neuro-immune disease with many many symptoms. There are those with severe M.E. who have been bed-ridden, no touch, no lights, no noise for years. Any use of out very depleted energetic resources leads to Post Exertional Neuro-immune Exhaustion...meaning air hunger, breathing difficulties, tachydcardia, no walking , no standing. Graded Exericise is not recommended for M.E.

Will be sending positive thoughts and energy for your PT session tomorrow.

[Mscolette01 in reply to Tewa]

What meds do they have you on?

[Jesdue in reply to pickleweed]

I think they dismiss my symptoms because I also have a diagnosis of schizophrenia.

[Mat08]

The physical stuff bang on do it yourself with friends I have been trying some new endurance research and things are improving but scaring the doc keep putting as much protein into you this is also part of the research, pectin, glutamine, lectin,acidophilus, feraglobins liquid, your body is already rejecting much needed nutrients that's what FND and NFNDs do and (endurance) make the muscles stronger endure the brain into complying its your body and brain rember that I don't have the cure but next Sunday athletics stadium track day its hard but my old army motto fortune favours the brave, and my fortune was a day shopping with my daughter with out the wheelchair first time in 5yrs so dig in my friend and do it yourself big respect from the United Kingdom