Point of decision to use wheelchair

[Kristina1]

jethro, im sorry you are feeling this way. I do disagree a lot with your approach. I wonder if some of your thoughts and feelings about this are cultural. I was raised in the Czech Republic, and attitudes toward disability are horrible there. I am so grateful to be in the US with my disabled child and now my disabled self.

I have a daughter who will be 8 in July, and also a 9 year old son and a 5 year old son. I have started using a wheelchair so that I can participate in outings with my kids and husband. I can definitely still walk, but not for very long/far and it requires attention that reduces my ability to be in the moment with my family and enjoy myself. My kids do great with the wheelchair. They fight over who gets to push me! I think if you frame it for your daughter in a positive light she will come around so fast. Children are capable of such expansive acceptance and flexibility. It's up to us to guide what direction that takes.

 

[affected]

I agree, the number of stories, photos and video of PALS interacting in amazing ways with their families and even animals (the video Max used to do of 'walking' his huge dogs comes to mind) in their wheelchairs have always been a huge source of joy to me here.

Jethro I truly hope you can find a way to see that life is what we make of it, even with ALS. Technology today allows PALS to achieve amazing things and contribute to the world around them in amazing ways.

 

[wishmobbing]

Jethro, I'm with Kristina 100%. Never see the wheelchair as an either/or. You could use it to go to the gym and arrive there refreshed! You would never consider yourself a lesser man because you wear shoes. It's just something that's practical to not hurt yourself and be comfortable (I realize that not every woman would write this line).
Never worry about how kids react to technology. They accept most things much quicker. But it would pain your kid to see you in pain. Man up and go easy on yourself!

 

[KimT]

Jethro, If you could ride your wheelchair to the gym, you'd have more reserve to work out.

I'm in the camp that believes in staying in shape as long as possible, eating healthy, and exercising. I totally understand your frustration but falling isn't worth it. The first time I fell, I got a traumatic brain injury and the second I sprained my good ankle and it took me out of walking for 5-6 months. I'm careful now.

I hate how my body is changing but I do what I can for as long as I can, then find something new that challenges me in some way.

 

[whereswaldo]

Jethro I am sorry if you truly feel this way. But I do not consider pals who chose to use innovative tools and equipment to make life easier, lazy or stupid. I consider us to be innovators and teachers, inventors and scientists, firefighters and police and doctors and lawyers. 5 years ago from where you live, if you had chosen to travel to Germany, France or Spain, you would have chosen an automobile or some other mode of transportation to get there. You could walk, but that just doesn't make sense. It doesn't make you lazy either. Human beings are adaptive, we have been changing ourselves and things through out time.

If you start to think on your other options, you yourself need to explain to your 8 year old daughter why you don't want to enjoy the time you have together. Don't make someone else try to explain.

Life may seem tuff and unfair right now, but things will get better. I believe that no matter how bad life may seem, someone else has it worse.

 

[jethro]

no, maybe i wasnt clear enough, cause my situation is a foggy. i dont think that it is bad to use wheelchair. it is not mater of "culture" or whatever. i didn't mean to offend anybody who uses wheelchair. nobody of you is in my position. i understand kristina1 who is shot by life with her situation: disabled child with disabled herself. but there's husband and two other children, who are the light in darkness, harmony... also, i think that general point of view is correct, but particular...
just to say that i do live alone, my 8 yo daughter sees me less and less as she grows, along with her mother. since she was born she has a problem (dyspraxia, if you know what it means - among all physical things, her chronological age level doesnt follow her emotional/intelectual level), so the only thing was workworkwork, practicepracticepractice, so we were as a nail and finger. her mum left me when she was 2,5,y.old but i was a motor of raising her up to her 7th birday. almost every day with her driving her from doctors/occupation specialists/work therapists/educ.therapists/kindergarden etc. i was with her longer than her mother, even they lived together. not to mention that i was ATM all the time.
i was big daddy who was everywhere and anytime, midnight and morning, everyday. huge, fat, strong, hairy, her advocate, protector who knows everything, taught her everything, i was trampoline, drum, boxing bag... now i disappeared. can not play with her, run... "doesnt love me anymore". "when i come he only sleeps"... "mum, where's my daddy"
this is the biggest part of problem. i dont care about myself. useless210lbsofshit: can not work, noone to help, no money, no family (all passed away except sister who is far away and ill).
can not be positive under such a circumstances.
now i'm living corp. nobody needs me, if someone calls me, he wants me to lend money (including 2'nd child's mum), testament is very often word.
mother of my second child ran away when she heard of my dg saying: "my daddy was cripple, don't want to spend whole life managing cripples"... but you should pay for alimentation! now i pay 2 alimentations which are 60% of my income. soon it will be 120% of my income (when i get disable pension). have no power to visit court, offices etc...

question is: how to get positive attitude at all, not how to retain it!

just can not addmit to myself that i need a help, was it a wheelchair, bring_me_cup_of_water, or so...
not to mention that nothing is adjusted to disabled persons (office for health insurance for disabled persons is on the 5th floor without lift, and when you reach it by yourself, they say: if you reached us it doesnt mean that you are disabled). everything like that. please fill up the form! no i cant! than go to... no i cant GO! if you cant go, that means you dont need it.
sky is the limit.
wheelchair screams: "this guy is disabled!". this is normal thing in normal world under normal circumstances. i'm not in that world anymore.

 

[KarenNWendyn]

Jethro, I feel badly for your situation. I would like to be able to help you, so please take my words as a suggestion of help, not as a judgement.

You still have opportunities to bond with your daughter even if you are not the able-bodied father you once were. You could spend time with her. You could take her for rides in the wheelchair. Simple acts of spending time together bring joy and don’t have to cost much. She will remember the time you spend with her for many years.

Feelings of helplessness and worthlessness are understandable given your situation, but they are also symptoms of depression. I realize your depression is largely situational, but it could be helpful to discuss your feelings with a physician or counselor. Antidepressant medication will not change your ALS, but they might give you enough of an emotional lift to reevaluate your priorities and feel more positive overall.

 

[jethro]

@karen
thanks for understanding and well-wishing advice. i'm sure that all things that happened (i mentioned just 10%-20%) had a main role in ALS progress through the stress/depression. actually and finally, it is still unknown did stress caused ALS, or ALS caused stress which is forcing it making a vicious circle. wheelchair is a normal thing in ALS cycle, and it shouldnt be considered as a problem at all, but when you involve it in personal happening like i did, it can be a problem. i shouldn't do that/didnt have intention to do so, but i was touched.