clester
Forum Replies Created
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We have one and wouldn’t know what to do without it.
It’s a full size conversion . Although they stopped making regular full size vans so it would need to be an altered new cargo van or a used one.
We have to have full size because we use it to pull our small camper. …Which I made to be wheelchair accessible…..we have traveled with the van and camper all up and down the east coast UP Michigan to South Florida. We have camped in some very difficult to access and remote places…..but extremely beautiful sights we have seen.
Side note…if you go used for a lift van….make sure you know someone who is extremely knowledgeable on how to fix things. I’ve had to fix many electrical problems and even had to take apart the electric motor that powers the lift in order to clean and replace the brushes. Also the cam arms that operate the flap that bridges the gap between the lift and the floor of the van, broke and had for a while to figure out how to operate the lift safely without the cams .
This is the 2nd full size van we gave had and both have required much attention.
Not trying to scare anyone ….just giving a heads up that if you have to pay for repairs , it could get expensive unless you have a very handy person to fix the problems.
If you don’t need or plan to need to pull something you might want to go with a mini van ….they have as much head room as full size vans and in most cases can use a ramp instead of a powered lift.
They do make trucks with wheelchair lifts but they are Incredibly astronomically expensive.
We are going to need to replace ours soon and will go with a lightly used cargo van and I’ll install a lift myself.
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Couldn’t come close to being able to afford anything special, but have made stuff fir my wife including many shoes of many different types. Since her feet/ankles have atrophied from not being able to move them . She sometimes wears braces to help keep her feet straight ( using braces to much, we have found ,has the opposite effect she needs) but normal shoes don’t work unless they are 10 sizes to big and would look like clown shoes….so we look for shoes I can alter to fit. Also have altered her braces so she can wear flip flops.
Gotten used to what to look for so it’s usually more of a matter of cost.
She even has boots.
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Used one for my wife at Clearwater Beach in Florida. They have some to use for free …they have huge balloon wheels that allowed her to float in the water….but be warned !!!! The chair is extremely unstable when floating. Whoever is pushing the chair HAS to hold on with both hands and keep a solid footing !!!!
Wife had a blast with it …first time getting soaked in the ocean (from the waves slamming into her).
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Wife has been in a wheelchair for over 26 years. She is near totally dependant, including she can’t feed herself.
She has just started moving her legs , although very minimally , that she hasn’t been able to do for over 5 years.
Makes no sense for an insurance company that would decline it since it is the only drug there is for treating FA.
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Update…wife is still improving although more slowly….had her first liver function test and liver function was normal….cholesterol is normal…only thing Dr found was her protein levels were low so we have added more high protein foods…which is great because we both love a good steak or our fish we catch at the lake…lol
Side note …those interested and don’t know…..you can get electric fishing poles…I made my wife’s , she has a large button that sits on her lap that she presses to operate the reel. She has pulled in a 42 inch long catfish with it. It is going on 8 years old and still works like new . Plugs into a power port( like in a car ) I mounted on her power wheelchair which she also uses for charging her phone or kindle as well as a 12 volt electric blanket when it’s really cold out…..on low setting the batteries will last several hours.
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My wife has a weakened soft pallet so she has to take her meds with applesauce….although this is the 3rd month and she is improving and can take smaller pills with water for the first time in over 5 years.
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Wife has started it …Medicare pays for it with about a $5 deductible ….only 2 weeks and already she has noticable improvements in her speach.
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Update….starting 2nd month…..$0 Co pay this month through medicare.
Feeling Is returning to her feet and she can move her legs, which she hasn’t been able to do in several years.
Her speach has cleared up enough she was able to speak to her sister on the phone for the first time in over 5 years…..although it is better mainly in the mornings so far…..imagine it will take time to gain strength and endurance.
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Be extremely careful with the bowel problems. And what Dr you see. Almost cost my wife her life and we’ve paid dearly for it. She now has an ileostomy (it killed her large intestine and it had to be removed) due to incompetent Dr’s (plural) in two different hospital emergency rooms.
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Since we have been traveling as much as possible, living in our little travel trailer,we have found very few places that aren’t accessible. The few, we’ve found are in older buildings that have yet to upgrade and I’ve mentioned it to nearly every place and they have all said it is in their plans for the near future. Even if that means going in the back of the building to enter( which we have had to do often), you just have to ask. Gatlinburg Tennessee spent millions upgrading for the disabled. We went on the massive ferris wheel at icon park in Orlando, completely wheelchair accessible. Even Clearwater Beach, in Florida,has free to use beach wheelchairs(my wife’s first time in the ocean, she didn’t want to leave).
It’s not worth shutting yourself in.
Be proud of who you are.
Stand tall, even if you can’t physically.
I’m 52 and I can tell you there is no one less disabled than you,i don’t care who you are. Most people are more mentally disabled than you unless you let yourself be that way.
I’ve learned in teaching karate (which includes physically disabled people), as a Boy Scout Scout master, as an employer, parent,caregiver(of more than one) etc. that everyone has their limits in abilities in ALL categories.
Don’t miss out on life especially due to self limitations. Don’t limit yourself because your afraid of this or that.
Go for it!!! -
I take care of my wife and occasionally, when time permits, in emergencies, another friend who has FA and I know one other person.
Not just eyes but hearing as well.
Which I agree with Karina. What’s the point of the study other than wasting time and money on a pointless, useless study that will not help anyone in any way except to line their pockets with our money.
Like most diseases. We need cures. -
I could write a book on this subject…. If I had time. Stress relief is only a dream for me.
Being forced to live on less than minimum wage, for two,and caring for someone who is severely disabled,Someone who can’t do anything for herself.
Being 100% abandoned by All family and friends.
Eating healthy…. Not a chance.
Excercise…. Not a chance
Good sleep…. Not a chance
Massages…. Yeah right
Etc. Etc.
The Only thing I can look forward to is getting up in the morning and waking up with my Coffee and a smoke. EVERY day.
At best a total of 10 minutes a month for a chance of joy. And that wouldn’t even be a chance if we didn’t choose to live in a tiny travel trailer and go places rather than living in prison in an apartment paying rent and not being able to go anywhere or do anything.
ALL dreams, retirement, possibility of happiness, hobbies, chance of basic survival etc. ….. Gone.
Can’t even possibly eat right. No money, no time.
Worst of it is no one cares. Sure they say they do but caring requires at least two things
1)effort
2)sacrifice
Love requires a lot more of both
Which is something nearly
no one is capable of doing in society any more. Saying you do and doing it are two very different things. Everyone says they do and very nearly NO ONE does it.
I’m 52 and due to the amount of stress I live with all day every day I know I won’t see 60. I’ve already seen massive decline in my health. I can’t do half what I could physically, just 2 years ago.
It’s sickening our society has fallen so far. -
Talk about bad timing. My first grandchild was born a couple days ago. She was a month premature. It will very likely be several months before any grandparents or aunts and uncles get to see her because of this virus.
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I started drinking and going to bars with friends every weekend after high school.
I started in martial arts at 16. So, by the time I started going to the bars after high school I was a black belt and my so called friends would get drunk, start fights, and expect me to bail them out. So I stopped going with them.
That’s, when I focused on real life….started my machine shop, martial arts school, pilots, license etc.
What you call taking a bad and turning it into a good.
You can let peer pressure hurt you or help you. Because I chose to go in the positive route I know now that I can do and have done more than nearly any two people put together.
Do I know how to party? No!
I can live with that.
I made a lot of money when I had my business and helped countless people both financially, physically, emotionally, etc.
I now know, now that I am penniless, homeless( well, living in a tiny, tiny travel trailer, with my wife), living on my wife’s
S. S. (which is less than minimum wage), 99.9%, if not more, of so called friends aren’t friends.
It is foolish to let peer pressure make decisions for you. -
Problem is she isn’t ok . she went from doing most things for herself ….hair, brushing her teeth, most of the dressing , she had just started an business making jewelry , eating, going to the bathroom , getting in and out of the van , etc. Etc.
Now she is almost completely dependant on everything . it is a huge struggle for her to even get a drink ( which I made a cup holder that is attached to her armrest of her wheelchair)or text on her phone that is strapped to her leg, she can’t feed herself etc. Plus now she is strapped with an ostomy pouch that I have to empty twice a day and change when needed ( which in over three years I am the only person who has ever changed it) . even her speech has severely degraded.
All because of the f#$@ing ( pardon the frase)hospitals bs .
So yeah ,when I talk about people misleading people, I have very good reason for it.
And worst of it is absolutely no one cares at all. Family , friends , government etc . no one at all.
That hospital absolutely destroyed her life and mine in every way you can think of. I’ve lost my business , retirement , just recently had to get rid of the last thing we had that we both enjoyed greatly and that was our 30 year old boat we used to go fishing on and even slept out under the stars on.
Now for the most part we have been struggling to live in our van cause no one gives a crap about anything but themselves. -
Since an ER Dr tried to kill my wife a few years ago, my wife is almost completely dependant on me for nearly everything. We have been basically been forced to live in a tiny travel trailer on less than minimum wage. So we travel a lot, as often as we can. Timing our travels between Dr appointments, which we schedule all at about the same times.
The traveling has improved her health. We both look forward to our next adventure s each time. I believe it’s the excitement and seeing new things and meeting new people that helps both of us.
I completely gutted out an old trailer and made it around her needs…hoyer lift for the bed and toilet,room for her to move around in her wheelchair(one of those large powered chairs), shelving etc., so she can get to “her” things as best as I could,solar powered (we stay as often as we can in national forests, no electric or water …. Free camping. Lol) instead of spending on rent we spend on travel…. Gas and souvenirs etc.
We have been living in our trailer full time now for about 8 months.
The stress on me is incredible. But for me to sacrifice for her is worth it….no one else will.
The future is what you make of it. Good or bad. -
My wife takes oxybutynin. She still has the occasional accident, usually it’s when our schedule gets messed up. Her diabetes does influence it as well, if her sugar levels are too low in the morning she can’t go like she should and that usually makes the urgency in the afternoon come earlier.
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My wife went from a regular fishing pole to a cane pole to an electric pole, with a big button that lays in her lap, that I made her. Of which I believe I posted a link to a picture of the pole in the fishing /outdoor activities (I believe it’s something like that).
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On a side note along those lines. If you have a dog. I’ve seen people put blankets in the dog houses during the winter. Real bad idea. Absolutely can kill a dog and have seen it happen. Use straw, wool blanket or wool bedding material. you you can get it from a farmer or tractor supply company. Straw works like wool. Insulates and keeps moisture away from you. In emergencies you can find and use tall hollow type grasses for insulation.
It’s why farmers don’t like too many deer…. They trample down the crops to make a bed because of the insulating properties of the plants for warmth in winter and cool in summer. -
There is a saying with outdoor type people, in cold weather …… “cotton kills”. Use as high a wool content sock as you can find. Preferably Marino wool. Or alpaca wool.
The oils from your body and the moisture in the air are absorbed by cotton and causes them to become cold. Wools naturally keep that from happening.
One time when I was a scout master of a boy scout troop(a troop that I started) ,we were on a winter outing(2 feet of snow) and a boys boots sole litteraly came apart and I had to carry him to the camp sight to warm him up and on the way I didn’t notice (because of the snow), a small stream that I stepped in and completely soaked my foot. I carried him to the campsight about a mile and a half in the cold snow with a soaked foot and because I was wearing wool socks my foot didn’t even slightly get cold. When I took them off to dry out there was steam coming from them.
With a good wool blanket you can curl up in it in 0 degree Fahrenheit weather and lay in the snow and be nice and cozy warm. I know, I tried it once just to see.
Wool is considerably more expensive but for warmth it can’t hardly be beaten. New age materials are ok too but I prefer wool myself, and both are expensive for good ones.
Just stay away from cotton.
Even in hot weather wool will keep you cooler than cotton.
One bad thing with wool is if you drag your feet on the floor they can build up static electricity so you have to take precautions when you are going to work on the computer. -
Great way to relax, help with patience, self control, coordination and just enjoymemt. I even reload my own bullets….. Super relaxing. Lol
Glue a quarter on a stick and try to hit it. Lol indoor range probably won’t let you but most outdoor ranges should. Or on a calm day use a lit candle in a box. Or some clay trap shooting targets placed on the backstop and see how small you can break them up. A lot of fun. Paper targets are fine for fine tuning and going for accuracy but mixing things up is waaay more enjoyable. -
My wife tried to get herself out of the van by herself. I was carting in groceries that I had to get out of the way of moving her wheelchair. Just as I stepped out of the, house I saw it. She accidently hit her joystick and off she went off the lift before it was even half way down. Luckily she landed in grass on her side. That didn’t do any favors for my hernia, ran over and lifted her and her chair(big fancy powered chair with all the options) at the same time. Scared me to death. She came away with a huge fright and some minor scrapes…. thank God. Did nothing to the chair. She’s never tried that since. Now that was a fall….with a 250 pound chair seatbelted to her from about 3 feet in the air.
I’ve fallen out of a barn from about 20 feet up but falling having something attached to you….. That is a whole new ball game. -
I know I’m a different kind of a guy so I can’t speak for all guys, but I personally don’t like women with makeup(maybe a little lipstick or gloss). I much prefer to see you the way you are. To me it is extremely rare to find a woman that looks better with makeup and way more times than not I think it makes most women less attractive.
That and I really like to reach over and give her a peck on the cheek, lips, or forehead every so often and a I can do without the taste of the makeup. Lol just my opinion as a guy. Might ask your guy/s how they feel about it. After all, aren’t they the only ones you should be dressing up for(why care what other people think) ? Might save yourselves some stress,time,and money.
Not intended to offend…. Just my two cents worth. -
My wife is late stage , unable to do even simple tasks and has congestive heart failure….a friend has serious heart problems with a pace maker …..both are taking it with no adverse side effects so far …..actually last several days I had to cut out my wife’s heart meds because her BP and heart rate has come down and stabilized. She used to have build up of fluid on her heart to the point her feet would swell a good bit….her feet are back to normal now and no sign of fluid build up . Only side effect ive noticed is she is itching more, not from rash, but I believe it is her nerves starting to fire again. Time will tell. So far though it is very promising.
Obviously each person is going to react differently and have to pay very close attention but it’s working quite well for my wife and our friend .