Using a wheelchair for epilepsy.

[JDQuinn75]

I've had seizures all my life do to my hydrocephalus that I was born with as an infant. For the past week I've been reading several articles say people who have epilepsy should be using a wheelchair. Well with the 41 years that I've had epilepsy I've never used one do to my epilepsy. The thought has never crossed my mind to use one because of my epilepsy. But several articles on Google say that people with epilepsy should. Who with epilepsy use a wheelchair? Inquiring minds want to know.

[Adlon57]

Quite agree, had epilepsy for 47 years, only time used wheelchair when I had prolapsed discs from stretching, painting garden shed nothing to do with epilepsy! I know when I am going to have seizure usually!

[EpilepsyAction1 Partner Epilepsy Action]

Hi JDQuinn75

Wheelchairs can be used for various reasons but having epilepsy doesn’t mean someone will automatically need to use a wheelchair.

Wheelchairs are generally used when walking is difficult or impossible due to illness, injury, or disability

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

[CatherineFrost]

I personally used a wheelchair for epilepsy as it was the only way my school or consultant (can't remember which) would allow me to continue attending. This was so that as i would always be sitting down and tied into my wheelchair, my risk of injury ie falling,hitting my head, etc. when having a seizure was lower

[JDQuinn75 in reply to CatherineFrost]

CatherineFrost, My epilepsy is from the hydrocephalus I was born with at birth. I had read awhile back that any person with epilepsy should use a wheelchair. I found that kinda odd after reading that. I never had to use a wheelchair back when I was in school for my epilepsy like you said you had to. I can't believe the school system you went through made you use one in order to attend school. Don't know how often you had seizures when you were in school but that a personal matter and none of my business I know. Thankfully I don't have them to often. I still have times that one will hit me hard and just take the energy right out of me. Grand mals are horrible, you probably know what I'm talking about if you've had some pretty bad ones yourself. I see a neurologist once a year for mine and are controlled by two different medications i take twice a day.

[CatherineFrost in reply to JDQuinn75]

I wasn't born with epilepsy i got it when i was 8 they dont know where mine came from or what causes it I have no warnings. I didn't always have to use a wheelchair to go to a school to begin with it was but at this point in time when I did I was in my last couple of years in secondary school they were uncontrolled and frequent tonic clonic seizures and getting progressively worse i was in the hospital more than i was school they got so bad at one point they made me get homeschooled they hadn't figured out what medication worked for me and was trying everything. like you I now see a neurologist once a year and thankfully they have now figured what works. im now on one medication once a day, controlling all seizures and in effect living a normal life I'm very lucky

[Penys]

I have got a variety of epilepsy including myoclonic epilepsy which makes my balance unstable so I need a wheelchair if I'm going out and feeling off balance that day.

[JDQuinn75 in reply to Penys]

Penys, I’ve never had to use a wheelchair with me being epileptic too. But after reading what I read online. It had said people with epilepsy need to be using a wheelchair. Although my neurologist has never said or mentioned to me about getting fitted for a wheelchair. All though now that I have arthritis in my spine I have thought about considering about getting a wheelchair, do to the fact there are days I can barely walk. I had one morning not long ago that I could barely undress to get myself in the shower to get ready for work. After I finished it was the same way try to get out of the shower. I haven’t mentioned to my doctors yet about starting to use a wheelchair for my disability. I probably should bring that subject up to either my gp or my neurologist though.

[Penys in reply to JDQuinn75]

Sorry you're having spinal arthritis problems, sounds extremely painful. You should definately talk to your neurologist about the possible need of a wheelchair.

Do you have a kind of shower that is suitable and helpful for your problem such as a seat and hand rail?

[JDQuinn75 in reply to Penys]

Penys, My current shower does have a small area if I need to sit. I’ve thought about looking into a wheelchair for myself for quite sometime the only reason I haven’t done it now is because I know I’ll probably be in it the rest of my life. The upper middle part of my spine has been very bothersome this week when standing. I’m feeling pain more so there now than my lower lumbar spine area. It seems only sitting helps me to easy where it hurts. I’ve looked at tilite wheelchairs online, since they are titanium and are lite weight. The thought has crossed my mind to bring it up to either one of my doctors and get there opinion on the subject. . If I’m on my feet for a long period of time the pain is unbearable. I’m only 43 and my biggest fear has been having to go into a wheelchair do to the arthritis in my spine. I’ve always thought I would probably have to before I’m 50. I go to my gp in a few weeks this month. If I do decide to get a wheelchair to help me get around it’ll only be a rigid wheelchair and not a fold up kind.

[Penys]

It's good to hear you know what you need to do now.

Sit and write every question you want and need to ask your dr/neurologist down on paper and take it with you so you can make sure you get all the info you need, I always do that because my memory is useless.

I'm 45 tomorrow and I've been using a wheelchair for a few years and I felt the same.

You should see an occupational therapist I think, I did and she was amazing! My myoclonic epilepsy was getting quite bad so i was asking for disability rails for the stairs and landing etc she saw how I was and said she would sort out an extension of a downstairs bedroom and bathroom which would have a disability shower and I had it all and I didn't even ask for it! It has helped so much!!

All my doors have been made wide enough for a wheelchair as well.

Try a good few wheelchairs out for comfort and size, weight etc. Before you choose one. 😊

[JDQuinn75 in reply to Penys]

Penys , Well I guess a happy birthday is in order for ya. Ya I’ll be 44 in September. I’ve had several tell me that I probably should go to a physical therapist but not an occasional therapist. With this being in the upper part of my spine I’m wondering if it’ll get to the point eventually that it effects my spinal cord as well. If it gets to that point than I would most definitely have to have usage of a good wheelchair. Especially if it causes paralysis at some point. It’s already affecting my siaticia nerve. It has for at least 3 years now. The way I see it there’s pluses and negatives when it comes to the topic of a wheelchair. Hopefully more positive than negative tho. I fight some days at work just to get through an eight hour work day. Witch I hate having to fight this during my work day. This is another reason I have been thinking about investing in a wheelchair for myself. Theres a few Places not far from me that sell wheelchairs like I’ve been looking at online. I go to my GP in a couple of weeks not really sure what his opinion will be when I bring up the subject of using a wheelchair. IDK.

[Penys]

Hi JDQuinn75 have you visited your Dr/neurologist yet to talk about a wheelchair etc, how did it go?

Penys

[JDQuinn75]

Penys, Sorry I didn't get with you til now. In regards to your question. I haven't had my yearly appointment with my neurologist as of yet. But I see my general practitioner next week. I'm not due to see my neurologist til September. Like I told you before having to use a wheelchair do to the osteoarthritis in my spine now has been a big fear of mine. I have a feeling it'll probably force me too with it in both of my feet too. They've been painful this week and last week as well. If I had to guess when I'd have to make the decision of going into a wheelchair , I'd probably say route time I hit my 50th or a little before. exaggerating but it's my best guess. but I'll probably bring the subject up to my gp while I'm there to see what his thought is on considering a wheelchair to keep on hand for me to use when I need it. Jason

[JDQuinn75 in reply to JDQuinn75]

Penys, went to my gp today. Told him that my arthritis was acting up on me and he didn’t really do anything about it. He was going to give me a cream for my hands that have been giving me a fit. I told him I didn’t want it. What the hell is cream going to do for my hands. This is turning out to be a big joke. I don’t think he’s taking me seriously enough. If he won’t do anything about that I know damn well he won’t when I bring up about the thought of using a wheelchair from time to time when needed. My neurologist I don’t see til September. He takes me more seriously than my gp. I don’t think my gp is doing anything I need him to. That’s my opinion that. He saw a place on top of my right foot and asked what happened and all I did was scratch the top of it. A lot of good that visit did for me today.

[Paul72]

Hi JDQuinn75, it depends on how severe your epilepsy is. My wife for example has seizures daily and a wheel chair makes life much safer, she will still walk herself if she's having a good day but if we're going far from the car we will always take the chair with us.

[Lovinghorses]

I'm asking the same type of question for the first time is it really true for someone to have epilepsy episodes go into a wheelchair?

[Adlon57 in reply to Lovinghorses]

It depends on the person involved, just because a person has epilepsy and disabled it does not mean they are relegated to being in a wheelchair all the time, I have had epilepsy for over fifty years, the only times I have been in a wheelchair is coming out of the hospital after a seizure, usually a bit weak after the strains of having a grand mal. Usually straight back home for a couple of hours rest afterwards!🥴I have been in a wheelchair for completely different reasons, absolutely NOTHING to do with my epilepsy!

[JDQuinn75 in reply to Lovinghorses]

Honestly I wouldn’t just be doing for my seizures. I also have arthritis in my spine that can be very painful. It would also be for safety reasons for myself. Of course I’d consider using a rigid wheelchair that’s light weight like a ti lite wheelchair. They are titanium built for the individual to fit them comfortably and there measurements only. Ti lLite wheelchairs the person like a glove so they stay comfortable in the chair while getting around in the wheelchair.