New to the group: as the caregiver, h... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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New to the group: as the caregiver, how can I help?

LHcaregiver
LHcaregiver

I am the spouse of a middle aged man who was recently diagnosed with Functional Movement Disorder. People who don't know him think he has Parkinson's, though FMD, we were told, is similar but not degenerative. We fought with several doctors to not be labeled as Conversion Disorder, as he was in a high stress job. After being treated for CD with no results, he went through the BeST program at Mayo Clinic, with some improvement. He was very active, and now struggles to do light activity for 20 minutes without becoming fatigued. Even family does not understand why he can't "work through it". He is not under any medication, except for COPD and asthma. He does yard work with frequent breaks. He drives, but gets lost, and often delays a trip if he is fatigued from therapy. I don't know what else to do to support him. I often have to defend our decisions to family. And disability is still not approved, after 2+ years since the disorder started in full force. I found this group while researching for insurance information.

2 Replies

Oh LHcaregiver,

You are so in the thick of it. Your story has so many familiar elements. Even a 'numptie' in a hospital in Dublin voiced his unqualified, un supported and wrong opinion that I had Parkinson's. (My FND started with a chemical clash post-op, named as serotonin syndrome - which either kills you or goes away in 72 hours. After 30 days they discharged me, without any follow up, and without any suppolrt, unable to walk etc, and on 23rd December.) The term 'first do no harm' comes to mind.

It took a further 7 months after the 'relatively monor you will be in hospital for four days but spent 11 days in ICU and 17 more in a ward all the while being 'treated' for SS' before I met a talented and sympathetic neurologist who actually DID know FND from (use your imaginatrion) and who diagnosed the condition.

I get fatigued too. Even small tasks can sap my strength within minutes. Long term walking has been out too, even with a stroller or a stick. Wheelchair travel is fun. I have found that people actually talk to you when you catch them looking.

I have no problem with getting lost. Then I never did. Driving is now a memory. I have done so on two rare occasions when I was having an extremely good-legs day but usually my dear wife drives (and does so exceptionally well too, I must add.)

Is it dis-ability or a lack or limited quantum of (current) ability? I have determined that it is the latter and that I WILL get better. Every step I take brings me closer.

OK so I still fall. Had a nasty one yesterday (after the first hundred or so I stopped counting....). I also have COPD but not asthma. I have bipolar affective disorder and diabetes to compensate (both conditions completely controlled, thankfully).

I struggle (fight!) on!

Pleasefeel free to join me. You and your huysband will be welcomed companions on the route 'back' (or is it forward?)

Best regards

Robert WT

Read or listen to the book Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology, with him. You both will find the treatment and mechanism theory sections to be interesting. He or you can create recordings of self-hypnosis for him, telling him to imagine his body working the way that it used to.

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