Clester
Forum Replies Created
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In case anyone is wondering those pictures were taken a couple weeks ago in The middle of nowhere in the Manistee national forest in Michigan. No one in sight the entire time we were there. Trailer is solar and propane powered and now carries 40 gallons of water, complete with TV, fridge,stove(one inside and one for outside), oven,air conditioner(although even in the 90s we didn’t need, I insulated the crap out of it), and even a washing machine. The plant hanging on back is a citronella plant….to Keep bugs away. Hoyer lift mounted inside to get her to toilet and into bed. As big as her chair is she can turn around in the trailer if she is careful(cant buy a trailer that way or at least all I’ve looked at you can’t and I’ve looked at a whole lot of them.) those toy haulers is the closest thing to wheelchair accessible but all I’ve looked at the ramp is waaaay too steep. This trailer I made is real close to Ada compliant one inch per foot. It’s like 1.1inch per foot. She gets up and down it just fine and is plenty wide enough(almost a foot wider than Ada requires) door is nearly a foot wider than Ada requires as well. Built a whole lot of storage and have plans for more. For its size it has, about twice as much storage as most trailers twice its size. A little thought and ingenuity go a long way. Lol she loves clothes and she can fit almost all of what she has in it.
She came up with the idea for me not to finish the walls and ceiling so we can get towels, blankets, or something from each place we go to finish them with. So for now it’s just insulation with heavy plastic on the walls and ceiling lol. -
And to add as far as FA is concerned. My wife let me know right away That meeting in a neutral place(which usually is a good idea cause you likely don’t really know the person) is very difficult if not impossible for someone disabled and in a wheelchair. But if you want a, relationship you have to take the risk just like anything you want to accomplish in life.
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As a guy. Disability or not. Be confident and be yourself. That is if you want a long term relationship. Not being yourself Springs surprises later in relationships and is almost never a good thing.
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If you’ve read any of my posts you probably already know how, I feel about Dr’s.
Just cause you go through the motions and get that piece of paper to hang on the wall doesn’t make you anything including and especially a doctor. As yours just proved they are more interested in themselves and their big paychecks than they are their patients.
Real doctors are extremely rare now a days. Lucky, in my opinion, if there is one in any given state and none in too many states. -
After learning the hard way. I’ve learned to trap my wife’s legs between my knees so I can then use my legs to move her bottom half as I need to. Surprisingly how few people I’ve come across knows how to do this, even in hospitals etc.. When I first met my wife the first time I took her somewhere I couldn’t get her in the car and I, at that time, was in pretty good shape and could easily put her weight over my head. I had to call a neighbor over to help. Very embarrassing.
Being able to control one’s bottom half is key especially when there is little or no ability to use legs.
Another FAer I help from time to time, he has the ability to stiften up his legs to stand so to speak and that helps a lot as well. He can just “stand” and I pivot him then lean him into the seat, whether a car, chair,toilet, or his scooter.
Give a big hug under the arms and lean back. I, after having a hernia, learned it to be much easier to lean back than to try to lift whenever possible. Crucial now since I’ve had my stroke and my left side doesn’t like to cooperate fully. -
Oh. The ramp is spring loaded and folds up with one hand and to test its strength I had four of us for a total weight of just over 600pounds and we lightly bounced on it. Her with her big chair is just under 400pounds. And just for peace of mind I have an adjustable sizzor jack for under the center of it as well and same Jacks as well for under all four corners of the trailer to make it stable for the movement of her chair and it don’t shake even a little bit lol.
She likes the stars so there is a skylight right over the bed so she can look out at the stars. -
Another point to me achieving what I have!
DO NOT even begin to try everything on your own. Ask for help. Get help. Find a way no matter what and don’t feel guilty about asking for help, Not even a little guilty. It’s your right and everyone else’s duty to help whether your disabled or not. It’s part of being a part of humanity.
Whether it be from books, online, friends, family etc. Get what you need to succeed.
As for the article and so called Dr’s saying things like writing things down for your goals. Psst. NO!! They have no idea, only their opinions. Goals start from inside you and that is the only place they can be built on. You might write down a list if it’s long for things you want to do today so you don’t forget anything but goals NO that has to generate and be fulfilled from within. If you feel the need to write it down then that just means you are not sincere to yourself….a surefire way to self defeat. You don’t need to tell others unless it’s a means to an end.
Self discipline is a rare commodity in people today. Waaaay too many people saying you can’t or shouldn’t etc. You have to build you. Period. Noone else will !!
Fear? Why? Afraid of accomplishing something? Why be afraid of that? Fear of failure? Failure doesn’t exist unless you don’t really try or don’t really want it so why fear something that doesn’t exist? Fear of something not going the way you want it to? So what? Try again! Then try again till you get it the way you want it. Just don’t do it the same way each time! From Albert Einstein, Definition of insanity…. Doing the same thing over and over and expecting a different outcome each time. I took me several tries to get the steering right on the car I built. Didn’t give up till it was right. Took a record(at that airport) attempts to get my pilots liscense(not that I didn’t pass the test but due, to weather, examiner not showing up, plane being available etc.) but I persisted and got my license 99%on the written, 100%+on the flight(the + is due to avoiding a dangerous situation that the examiner said even most experienced pilots would not have avoided and he himself didn’t notice).
Self discipline…. Effort…. Keys to success in anything. This is for you….. Not the guy down the street, not your mom, sister, brother etc… But you!! -
When I was young people would tell me why are you wasting your time, or you’ll never be able to do that, etc. I used that as inspiration just to prove them wrong and I did.
Have to do it because you want it. And I mean WANT it.
DO it. Don’t just talk about it. Get off your backside so to speak and do it. You can because you want to.
Failure is not an option.
There is no such thing as failure unless you don’t even seriously try.
You might find ways that don’t work but that isn’t failure, That is experience and it’s the only way to find what works and how things get invented/improved!!!
That’s a FACT !!!!
Always has been that way and always will be that way. -
I used to teach martial arts. I used to tell students)(from my own experience) that everyone goes through ups and downs, some find certain things, easier than others and vice versa. Just like school…. Elementary you start at the bottom and hit 6th grade and you are at the top, then middle school, high school, college, work/jobs etc. These ups and downs is a part of life for everyone and you have to push yourself on through in order for the “rewards” .
The reason most people don’t stick to any exercise etc plan is laziness and lack of discipline and is why very few will ever come close to experience half what I’ve done in my life.
I not to brag but to inspire others I Owned a martial arts school, pilot and owned a couple of small planes, started a boy scout troop, worked on everything from steam engines to the space shuttle, built my own computers, put together and owned a small machine shop for over 20 years to include computer controlled machines, boats – including one on lake earie(which is quite challenging to say the least for those who don’t know) , anything to do with farming including training and hooking a team of 8 horses to a wagon,rewired houses, plumbed houses, designed and built a backhoe out of an old garden tractor, designed and built a small car from scratch that gets over 50mpg, restored an old El amino car with a 600 horse power engine,completely reworked an old camper and made it wheelchair accessible, etc, etc, etc. -
People and even close family have not even a tiny clue as to what it takes to take care of my wife all day every day, not even the slightest of a tiny clue. And worse yet no one even cares enough to find out.
Even her own daughter that”took care” of her for a few months while I was away doesn’t have a clue. Her idea was to keep her in her room, at times only allowing her to go to the bathroom once a day, not eat like she should or take her medication like she needed etc. Out of sight, out of mind, is how most see it.
The last home aide she had stole a bunch of her medication and some of which the Dr refused to replace even with a police report and the word of the home care aides manager. I had to deal with all that even though I wasn’t even there at the time…. Cause no one else gave a crap.
Her family looks at me like I’m trying to take her away from THEM and cause THEM problems. They are truly mentally challenged/evil to say the least.
Since the Dr tried to kill her in almost 4 years I have been the only one to take care of her ostomy bag. When I was away her daughter did do it for a few months because she Had to. but before that no one even cared enough to even think about it much less offer to find out.
My wife has it a lot worse than most and I have to deal with it all day every day no matter what. Even when I’m ill or hurting…. I’m there. Even when I had my stroke and my hernia I have been there all day every day. The reasons I had to leave is 1-her daughter invited a drug dealer to live in the house against our wishes(who is still there) and her daughter let’s the dogs pee and poo on the floor every day and I confronted her about the stuff and even let my wife’s parents know what was going on and it all fell on deaf ears. My wife (due to some of her medications) has to get drug tested nearly every month. The house smells like pot and ammonia from the dogs every single day. At times you can smell the pot from outside even. Only so much I could take so I left. Eventually found our trailer and made it wheelchair accessible for my wife and she is back with me and she is doing much better… Considerablely lowered her insulin and her cut one her heart meds in half etc.
I could go on and on about all this but I think you get the gist of what I have been going through to be there for my wife. -
Then add :
Hair, makeup, jewelry, etc in the mornings. Luckily her makeup usually is just lipstick (lol). She is beautiful enough not to need anything else, perfect skin and completion. -
Adding to that. My wife can’t tilt her head back anymore so she has to drink with a straw always and has neck pain almost always.
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For my wife its:
-Snack
-Empty ostomy bag(thanks to Dr a few years ago)
-Bathroom
-diabetic(check sugar/insulin)
-teeth
-night clothes
-medication
-bed
Thanks to the Dr, none of which she can do herself anymore.
Sorry I keep coming down on the Dr on most postings but… You really have to pay attention and be careful with Dr’s. This one completely upended both our lives and got away with it. -
I’m over 50 and I’ve used the phrase “getting sideways” with someone since I was little so it’s been around a while.
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I realize it’s not exactly on topic but…..
Something that has always been at the back of my mind whenever we go anywhere. What if we broke down? I’m handier than almost anyone,
but what if it’s something I don’t have the tools(I keep quite a big tool box in the van) with me to fix? I’ve even changed a fuel pump, wheel bearing, water pump, etc. along side the road. It’s not just a tow truck you would have to call. I have to find transportation for my wife. Tow trucks aren’t wheelchair accessible. BIG money for us to break down.
So it is nice to know Uber or lift has that option. I’ll have to look into that. -
Odd to me that you mention that.
I have always tried my best to see through my wife’s eyes and put myself in her position.
It wasn’t till I had my stroke about 9 months ago that I truly saw a glimpse of what she has been living. The left side of my body just doesn’t want to cooperate including being able to talk right. Though it has gotten better for me, a little, it opened my eyes to say the least.
Not at the degree FAers and others but I understand what you are talking about and I agree.
It also made me think of what my dad went through before he passed away with his Alzheimer’s,every time he “woke up” and realized what was happening it hit him hard emotionally.
Now I at least can say i somewhat understand.
Like trying to look at life through a pinhole in a piece of paper. Soooo much you want to see/do and can’t.
That is why I try so hard to give my wife “life” and as best I can. Just wished her family could see that or at least try to.
Since I made us our new home(a very small but wheelchair accessible camper) it has allowed her/us to see new things and places. That is mostly all she has now. Her family was content with her just sitting in her bedroom in her wheelchair literally all day every day. They just do not, even a little bit, understandand. To a degree I truly think they don’t care, if they did they would at least try to understand/see. -
I mentioned something similar on a previous post. Through my wife I have met several FAers and I’ve noticed that the ones (as they have gotten older) that had their spine fused have gotten along much better than those who didn’t. Obviously that won’t be the case all the time. Just my observation.
I’ve noticed the ones (over 40)that had their spine fused seem to be able to sit up straight and keep their head up much easier. The ones who didn’t all have trouble keeping their head up straight(including one that is only 28).
Thanks to the doctor several years ago that tried to kill my wife, she can’t feed herself now and the fact that she can’t keep her head up straight makes it very challenging to feed her (I’ve gotten used to it, but anyone else that tries she ends up wearing half her food). It also makes it almost a necessity to have side supports on their chairs/scooters where the ones with spinal fusing don’t need it. In my wife’s case anyways it gets very uncomfortable for her at times. -
First time I took my wife to the beach in her power chair I had to have 3 guys help me get her out.
She loves the beach though. I was able to lower her chair and tilt it forward enough so she could get her feet in the sand.
I was hoping (before I lost my shop) to convert one of her old power chairs into a track chair that could have gotten her out into the sand and even the water,but that will never happen. And since they run about 15k makes something like that impossible to ever accuire. She is supposed to be getting a new chair in a couple of months so maybe I can find some big Balloon wheels for the chair she has now. We’ll see. -
We had a guy out of the blue last year come up to us while I was fastening my wife’s chair into our van at a Pep Boys auto parts store.handed us $1200. I couldn’t stop crying to thank him before he left. We used the money to pay some bills and took the rest and that night left to take my wife to gatlinburg/pigeon Forge for a week.
Very few people of that caliber any more in this country. VERY, VERY, VERY few.
Which on that note they took great measures in Gatlinburg to make nearly everything wheelchair accessible if anyone is interested in going. Pigeon Forge is mostly also. -
What I’ve been through I can say that there is no comfort that can be given other than actual help and in my case has been almost none from anyone in any way. Except the love of my wife. For several months that I couldn’t be with her because of her family I was ready to end myself on several occasions. My wife brought me back each time. At least in my case not a single soul gives a crap at all about me or my wife, of course they say they do. But actions speak louder than words. My son is the only one who has helped and he lost a good job in doing so. Her family’s help has only consisted of making things worst in every way they can.
I tried reaching out to a “therapist” /counselor and the only thing she had to say after showing her proof is that she has seen people go to jail for less in the case of what her family has done.
But that would make things even more stressful for both of us. -
Well I’m back. After literally losing everything I had. Business, retirement, boat, etc. Reached out to her family for help and it fell on deaf ears. Also had a small stroke in December. Bought a small camper and basically rebuilt it to be wheelchair accessible with a heavy duty fold out ramp. We have been living in it now for over a month. So we can be together. So far it’s working out pretty well. Attached a Hoyer inside it that swivels to get her on the toilet and onto the bed. Everything works off of propane or solar. Even have a small washing machine. Spent several weeks in Michigan’s forests. (free to camp in national forests). It has been good for both of us. We get to be together and she has been able to cut her blood pressure medication in half and being diabetic, she has reduced her insulin by 5 units a day, reduced her need for as much pain medication. She says it’s been the most fun she has ever had. Meeting new people seeing new places etc.
For me it’s helped me mostly recover from my stroke and let’s me be with the love of my life. -
Had the idea and designed a system that would automatically clamp her chair in place and release it with a small easily accessible lever. But I lost my shop so that probably will never happen.
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My wife sits right beside me in the van. So yeah it is possible. I removed the seat. I also used regular seat belt connections for the chair which makes it much easier and ten times faster to fasten her in and unfasten. Just push buttons instead of the Ratchet strap things. And I bolted them to the frame of the van unlike most straps that are only attached to the sheet metal floor. Female part of the belts are attached to the van and attached the male ends to her chair. Solid quick and easy. Lol. And still have full use of the bench seat/fold out bed in the back. Lol