Paralysis Support Group
Paralysis is the complete loss of muscle function for one or more muscle groups. Major causes are stroke, trauma, poliomyelitis, amyotrophic lateral sclerosis (ALS), botulism, spina bifida, multiple sclerosis, and Guillain-Barr syndrome. Paralysis may be localized, or generalized, or it may follow a certain pattern. For example, localized paralysis occurs in Bell's palsy...
Hi all,
I'm 45 living in Australia
I live with episodic paralysis of my limbs, mouth/throat, neck and face. I've spent 16 of the last 17 months getting around in a wheelchair. I live with conversion disorder with paralysis symptoms. I accidentally convert feeling powerless into paralysis. Which of course makes me feel more powerless. I've had conversion disorder with episodic paralysis since I was 19, though it just finally got diagnosed last year.
I'm very very lucky that Australia has brought in National Disability Insurance Scheme. This allows me to have workers visit me daily to help me live as independently as possible. I wish I could share this with everyone desperately needing this care too.
I'm currently unable to weight bear and my arms get very tired quickly. My speech comes and goes most days as my mouth works or doesn't.
I'm waiting for Disability housing. I'm in a split level unit or condo now. I've got a wheelchair ramp out back into my garage but I can't leave the garage alone- my driveway is too steep. I live in two bedrooms, a small toilet room, a bathroom and a laundry, with a small space joining all these rooms upstairs. I can't get downstairs at all to my kitchen, art studio, lounge room or dining room, or to my front door. One day I'll be moved into a fully wheelchair accessible place I can access all rooms in.
I'll walk again at some point, but it's unknown when or how long for.
I like to go sit in my wheelchair on my ramp out back and feed the local birds. I feed crows, currawongs, Indian mynas, Crimson rosellas, a turtle dove and two crested pigeons regularly. Sometimes cockatoos too. One crow is really brave and isn't scared of me. The turtle dove has naps on the ramp laying down on it. The birds give me a lot of joy.
I've got a cat I really enjoy. She's sleeping on my lap now.
I have my child stay with me 1/2 of holidays and about every 4th weekend. I wish it were more. I Love that time being a mom, even though they do get a lot of screen time when they are here.
Last Thursday I went in person with a worker to see my psychologist. Usually I just talk with him on the phone for sessions. It was my first time beyond my ramp for well over a month. I find my thinking adjusts to think just within my walls and back garden when I stay inside a long time. Does anyone else find this?
Please tell me about you. Which country are you in? What sort of paralysis do you live with? What gives you joy? What contact do you have with other people? What is life like or you?
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I have toys. So the ones I have not used or need any more, are gone in the trash. One of my toys is just a regular hand held massager with an attachment. The other is a real insertable toy. This morning I ordered a new toy with attachments. It is small and has a brush like attachment and the other looks like a rose with a tiny tongue. I'll get it in about 2 weeks. Rechargable and...
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I can't believe this has gone on this long. So I don't have much hope of getting a tech job, but I saw an educational job that I thought might be really good. It would have been working at a university supporting high school students who are taking college classes. I did a mock interview with a friend and prepared extensively. It was at the university that I graduated from. I was very excited...
Here in the UKI had an accident in 2013 causing spinal injury, paralysis from he chest down severe spasticity and double incontinence.
My life remains very restricted. I have been out of my house only about six times since leaving hospital in August 2013. All of these have been hospital visits. I do not regard being housebound as a self-imposed choice. Although friends and a few carers have kindly offered to take me out when I have been out being wheeled over rough surfaces made my spasms even more severe than usual.
Friends have been very kind in doing shopping. Even so, there are some restrictions compared with what was possible when I could look after myself.
I have a limited choice of what I can wear. Many kinds of normal, non-stretch clothes such as shirts, would be very likely to be torn by carers when getting dressed or undressed.
Because I can not move in bed, I have to lie on my back for 12 hours each night. If I am uncomfortable that is just the way it has to remain until the nurses or carers arrive.
Apart from visits by friends, I have no face-to-face social life. E-mails, Skype and the Internet are valuable to have some outside contact but are not a complete substitute I am not able to visit places I would like to go to. When the weather is good, I sometimes think of where I might go if I could and look it up on the Internet.
I have not been upstairs in my house since January 2013 and rarely leave one room: most of my possessions are out of reach.
I can not hold a book or newspaper properly and in the right position to read for more than a quarter or half an hour.
Holidays, or even a night away from home would be very difficult. Nursing care would be needed; so too would a special mattress to avoid the risk of pressure sores.
My limited reach is made worse by my limited ability to pick anything up. My lack of hand and finger movement makes me clumsy. Often, I dropping things on the floor and have to struggle to pick them up with a stick with an attachment,
Good luck, Barry.