My daughter has FND she relapsed and now has been unable to walk for a year . I’m terrified she will be this way for life.

[Beach16]

My daughters therapist says she needs to go to a residential treatment place for mental health! Has anyone done this and has it been helpful

[-132]

My partner went into a secure mental health unit!

How old is your child?

The staff were great, it was useful to have a dr on site everyday to access him, it was great for a diagnosis and correct medication.

However, some patients were extremely poorly and violent. His pychologist said my partner would not get better there because it was to stressful for him, however it was good to gsin a diagnosis and treat him medically.

The staff were amazing.

Have you asked if you can have a look around or what level ward she will be on.

I wish you and your daughter well, my partner also struggles with walking now, its very hard on a daily

[Beach16 in reply to -132]

Thanks, sorry to hear your bf struggles,. My daughter was diagnosed at an impatient ward but max stay was 10 days They rececomend the residential but I fear of those Pt like you mentioned that are loud or violent, that will make my daughter worse. She is quiet and usually listens to people in charge. The Residential place currently won’t take her cause her level of functioning is so low and physical therapy programs won’t take her cause mental health is so bad!! So we are stuck without help my daughter is 16 . It’s very fusturating now I am afraid she doesn’t want to walk again , she says she can’t remember when she walked ... it’s scary

[-132 in reply to Beach16]

Aww this made me cry, I know exactly how you feel. It's bad enough my partner is 38 and did used to be healthy, but 16 is a hard pill to swollow.

I'm sorry I can't help you more.

We have only been going through this the last 18 months and we are stuck without help.

My partner is also non aggressive and quiet, he found this increasingly stressful being in the hospital.

I really hope she gets the help she deserves and try your best to remain hopefully 😊

[Keeponfighting in reply to Beach16]

Can you ask your dr to refer your daughter to the rehabilitation program in UCLH in London? This is where I had been treated I was an in patient for 6 weeks as I also been diagnosed with FND. I had paralyses, speach affected and all sorts of other symptoms including terrible tremors. I had speach therapy, and other therapies there. My speach is better though I still stater when nervous or exausted. I am working now so please don’t lose hope. After 10 years of not working I thought I wouldn’t work again but God is good he helped me through it. All the best.

[Stanleyleonard12]

Hi Beach16,

I have complete sympathies for your daughter. It’s been about 2 years since I’ve walked. I’m waiting to get into BC’s inpatient Neuropsyciatry program. They do a two week intensive assessment and then you are either sent home or you stay for a few months with a multidisciplinary approach of PT, OT, SLP, Neuropsychiatrist and neurologist. Where are you located?

[Beach16 in reply to Stanleyleonard12]

Minnesota, the residential programs for mental health won’t take my daughter cause she is not functioning enough on her own . She was doing a 2 week program at Mayo Clinic the BeST program with intense PT and Ot but week 2 she got sick and they won’t let her come back , they feel she has a mental block and needs more therapy!!! We are stuck in the middle. They recommended out of state programs inpatient in Maryland Kenny Kruger and many other so I’m checking into those. Where is the program your looking into ?

[Stanleyleonard12 in reply to Beach16]

I’m so sorry about your daughter. I was looking into the mayo clinic program as well but I’m in Canada so the one I’m on the waiting list for is in British Columbia. It’s the inpatient Neuropsyciatry program. It’s the only one in Canada.

[Stanleyleonard12 in reply to Stanleyleonard12]

Hi, I just saw your reply that you said your daughter was 16. The program I’m waiting for is people over the age of 18. But my physiotherapist who’s fantastic and the first person to be able to stop the deterioration and start moving said that in Louisville Kentucky they have a good place or it might be they have an FND expert there. I can find out if you’re interested.

[Sjbuck]

Hi,

This might sound strange, but when I was first diagnosed over a year ago my legs kept going then gradually coming back. Gates different every time. The odd thing was I experimented.... I tried walking side ways, backwards and I could just couldn’t walk forward. I couldn’t keep upright held on to everything or walking sticks.

I can walk now, but usually by night my right leg goes and walk with a limp and fine by morning.

Please let your daughter to keep positive and try different things even if it sounds strange.

Mines the back spasms I get which caused me to pass out then legs would go as a knock on effect. Still have issues but I try not to overthink cause that makes it worse and meditate - well listen to calm app and lay still and beach to clear me head.

Thoughts to your daughter x

[-132 in reply to Sjbuck]

Can I ask how long did it take you to recover.

My partner is going through a similar thing at the minute

[Sjbuck in reply to -132]

Hope he’s ok and finding away to keep motivated and his symptoms aren’t getting him down too much.

For about a year, 6-9 months a lot of symptoms at once. Walking - arms weakness and even speech at 1 point.

Foggy head on and off but more off now than on.

Just the breathing and spasms and left sided weakness but I have atrophy now which they can’t explain. Had x2 emgs now but clear so taking that as a positive. Just been told to exercise other move it or lose it basically.

Tell you partner to keep moving even little bits and rest when he needs to. When I’ve over done it I get a weird feeling all over my body and then I start to go heavy and limp and usually sign I’ve over done it and need to rest.

I seen a private neuro physio when it started as nhs waiting list was mad and not guaranteed. Did a few months which help and nice to speak to someone who have seen other cases.

[-132 in reply to Sjbuck]

Wow, you have really been through it, my partner spends days in bed not been able to walk at all.

My son has Tourette’s syndrome, we went through a family trauma and my partner appeared to develop tourettes like my son,motor and vocal tics but it was different than tourettes even though he does everything like my son,he also had, memory loss, stutter, loss of legs, motor tics, seizures, confusion,banging his head having no recollection of doing it.

He was having ten seizures a day and he was taken into a secure mental health unit for 8 weeks. He was diagnosed with conversion, ocd and anxiety. He is on 22 tablets a day. They believe it stems from poor childhood and recent trauma.

Since coming home from hospital the tourettes side has subsided and the seizures.

However, hes now hallucinating and hearing things, poor memory, stutter. His legs have gotten worse. I have given up my job to care for him. He now just falls to the floor throughout the day, can't speak or respond. I'm not sure how long we can keep going like this.

[-132 in reply to Sjbuck]

I will tell him to keep moving, have you ever had any episodes of vomiting??