Clester
Forum Replies Created
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Made my wife into a peacock one year. Got some real peacock Feathers, used a styrofoam(craft/or florist) ring cut in half, poked really long ones in and glued them in place. Attached it to the back of her chair(still have it hanging on her daughter’s wall above the tv) . Attached smaller ones to her feet and various places on her chair. Got her peacock decorated leggings and shirt.
It was awesome. Lol
Made her a witch another year with a flimsy plastic shaft (for the broom handle) that stuck out in front of her chair between her legs, and cut off an old broom and mounted it behind her chair. Makeup, cape, hat. It was awesome too. -
Made parts for and/or worked on literally everything from steam engines to the space shuttle. Designed and built a small car from scratch(over52mpg), small backhoe from an old garden tractor , electric fishing pole, and numerous(too many things to even remember) other things.
Had designed a track driven wheelchair (for off roading/hiking) for my wife(never got to build it). I built a Wheelchair accessible camper(self contained/solar powered) we are living in. I posted pictures of a lift mount for the boat we used to have to get my wife in and out. Since I met my wife it was my dream to produce and/or help anyone disable get things they need or that could make their lives better. -
I made one for my wife that mounts on her armrest. It is solid aluminum and can flip down out of the way. Made it to fit the good tervis cups with the handles. No plastic. It has taken a beating for several years now. I wanted to make and sell them cheaply, until I lost my shop that is.
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Since the Dr tried to kill my wife she isn’t even able to reposition herself anymore. So pressure sores are a very real threat and I have to keep an eye out at all times.
I keep a good $400 seat cushion under her, even when I put her in a manual chair. Best prevention is to make sure that clothing is not bunched up or that you are sitting on any seams. I Keep a sling under her all the time. It has the opening for her to use the bathroom so I make sure the opening is so she isn’t sitting on the sling.
The few times she has had pressure sores. Again make sure she isnt sitting on anything first. Then to heal them just clean with band aid brand wound cleaner with a cotton ball , then neosporin, then bandage. Usually takes about a week for them to heal enough to stop with bandage but I still apply neosporin till it’s pretty much gone, about another week. Where the sore is determines what clothing she wears so she doesn’t sit on any seams or edges, no matter how soft they are. -
We had experience with concert venues before, how hard it is many times to get wheelchair accessible seating and it took a class action suit to at least somewhat fix it. So I didn’t even try.
With the seating it is with buying tickets it’s first come first serve and for wheelchair accessible seating they made you fill out forms and wait sometimes a month to hear back from them and by then it’s sold out or the concert is over. Seemed as if, and it wouldn’t surprise me, that they didn’t want wheelchairs, probably because they take up more space and that’s money out of their pockets so they made it nearly impossible to get them.
Like flying if you are in a power wheelchair there is, on most airplanes, only one or two that they can take on any given flight(for weight and space reasons, which makes sense, but not in an arena).
And as for the challenges we face, I could and wish I was a writer, write a large book on that subject. Put it this way…… We have been forced to live in a tiny 15 foot long camper trailer… Smaller than most people’s bathrooms!! That is just the tip of the iceburg and it’s why we have been traveling, camping in national forests(because it’s free), Walmart parking lots etc. Even family….. Those who care and would help can’t and those who can help won’t!!
Since I had my stroke and hernia just makes things extremely massively difficult to say the least. Spend all my time taking care of my wife and don’t even have time for me to go to Dr’s to try to get disability for myself, which the money would be a great help, but how? No time, no help, no money!! Really is sick in this country that we are having to live like this!!! Although the traveling does give us at least some resemblance of “life”,instead of literally spending all day every day sitting in an apartment doing nothing all day every day because we couldn’t afford to do anything, which is why the trailer….. “life”. Things most people take for granted and constantly complain about!!! They have no idea!!! -
My wife and I have been traveling all up and down the east coast from Michigan to Florida. She can’t get herself on or off of the bathroom. We have to use family bathrooms and finding those just anywhere are hard. We’ve come to learn to just having to find the nearest Walmart.
Along that topic how about parking spots. Extremely frustrating when people park in the van spots. Almost all regular handicap parking spaces aren’t big enough to get my wife out of the van.
Went to a concert in Detroit and had to pay $80 for a spot that was wheelchair accessible for our van. Normal spots were only going for $20. Is that sick or what? Went to Clearwater Beach in Florida. There is no parking within a mile of the beach that is big enough for our van. There are only 2 parking spots on the beach for handicap parking, neither are big enough and they charge $7 per hour. Most Parking garages, are out of the question, van is too tall. -
Anyone heard of or tried kratom? It’s a herb along the lines of Marijuana but you don’t smoke it.
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Some of Michigan’s beaches have walkways out close to the waters edge.
Just came from Clearwater Beach in Florida and for free they have beach wheelchairs available. My wife for the first time got to get in the ocean(gulf of Mexico).
Extremely beautiful beach. Guess that’s why they call it America’s most beautiful beach. Pure white natural sand, breathtaking sunsets, 95 degree midday sun and can still walk the beach barefooted. Lol -
As a pilot I would recommend calling both airports and in form them of your situation, dates of travel, what type of chair/assistive devices and medications(my wife is diabetic) etc you will be needing to take with you.
Remember to call BOTH airports(that is if it’s a round trip. Lol)
I’ve heard horror stories and very accommodating stories with security. So, the more prepared you are the less likely of ending up in the horror story situation. More so if you are in a power chair (because of the weight and space required of them they may only allow 1 or 2 on an airplane)
Bottom line….. Be prepared well in advance. -
A friend I’ve helped out on occasion has a large key keyboard and a large screen touch screen computer. He uses it a lot everyday.
To aid in his using his computer he has a computer chair that he has rigged up with a seat belt that he straps around his chest to keep him secure in it. He even has a small refrigerator close enough to his computer he can pull himself over to it to get drinks and food.
Along with that he has his house rigged up with “alexa” to work all his lights, his radio, his furnace/ac, and I believe some kind of gaming system (I’ve heard him play “jeapordy” several times). Even though he has difficulty speaking, he manages it and the computer quite impressively. -
Great letter. Great advice.
How many healthy people out there complain about stupid little things and get depressed and angry. If they only knew how good they have it. My wife can’t hardly do anything anymore and has a real hard time speaking and gets frustrated when she has to constantly repeat herself. But still she keeps going on. I try my best to get her to new places and see new things to keep her upbeat. So far it’s working well.
People around her had her blaming God for the way she is, before I met her. I’ve managed to turn that around by telling her the truth (that God can heal you but that doesn’t mean he will). Things people do is what no doubt cause most diseases/disorders. To blame God is like blaming your pencil for failing a test in school. He didn’t do this to you. He doesn’t want this for you. He told us how to be healthy and to prevent these diseases/disorders, We choose to not listen,WE get the consequences. Like children not listening when told not to do something and they turn around and do it anyways. Pay the consequences, pick yourself up and go on. Walt Disney “keep moving forward”. -
My wife’s chair is one of the big fancy powered chairs with the tall tires. Does ok on grass as long as it’s dry. Even a little dew present and the slightest hill and it just won’t go in grass. It is een trying to find wider wheels for it but can’t so I’m going to have to make some. Lol
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And yes her cardiologist approved the cutting of her medication.
I’ve gotten used to, when she isn’t feeling right to check her blood sugar and her blood pressure. Which is how I caught the need to cut the medications. (especially since the Dr tried to kill her). -
My wife was diagnosed with congestive heart failure.
Since we started doing our traveling thing and camping we were able to cut her heart medication in half and it’s still getting better so far.
Hope this helps others as well. Don’t know if it’s the camping, the food we eat, the enjoyment, or what, but it’s working. Also cut her insulin by 6 units a day so far and is still getting better(even when she eats things she shouldn’t like cake, she doesn’t spike nearly as bad as she used to). Her feet swelling went away and the color came back to normal. -
Really sucks. We call each other husband and wife but was never able to actually get married because I couldn’t afford insurance etc. Now that I thought since I’ve lost everything that we could actually get married but no. She still would lose her medical and income. Which is what we have been living on. Lose everything I had so I could be there for her and I wanted to do this one thing for her and government rears it’s disgusting ugly head every time.
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Good rythym in working out is extremely good because you can work out longer without getting tired out as easy. Long distance runners know this….. They start a pace/rythym and as long as they can keep that pace they can go farther.
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I used to listen to music when working out in martial arts. Music definitely helps keep a rythym going.
Related to that….. I used to do my martial arts on different terrain like hills, sand, and very helpful was doing it in water/swimming pool or lake. In water you can more easily tell if you are moving correctly…. Do it right and it’s easier to move, do it wrong and it’s harder to move, And that works whether it’s for martial arts or not. -
My wife’s uncle is an orthopedic surgeon and he looked into this for us and from what he could tell it is very promising. For years he said the cure for FA wasn’t possible because of FA being in the genes. This new breakthrough actually can change all that. And from what he could tell it won’t matter how far along your progression is for it to help considerably. Obviously it’s not going to reverse damages done by FA or things related to FA like scoliosis, damage to heart muscle, diabetes, etc. Although diabetes could be overcome just by being able to become more active, as long as your pancreas is still able to produce a little insulin on its own.
He said this is the most promising treatment for FA as well as other genetic disorders(like Cf, CP, etc.) he has looked into so far. So it’s not just going to help FAers. Though they are focusing on primarily FA. From what he said it looks like it’s not just to lessen symptoms like most treatments that has come before but be able to actually reverse most if not all of the FA.
VERY promising he said emphatically. He couldn’t tell how long it might be for sure though. -
Not to bring up religion but Bible says and knew thousands of years ago…. Everything in moderation. Eat what you’ll use. As someone who always was into my health through over 30 years in martial arts. Even obese people should eat plenty of protein and carbs. It Helps your energy. Diets kill. Eat right and get off your “behind” so to speak. Disabled or not it still applies. Only one disease I know of that protein is bad for, PKU (my cousin has it and can’t eat protein). It, in him anyways, presents itself like cerebal palsey, he is 46 now and has 4 kids. My best friend since he was born. Which by the way, martial arts helped him an amazing amount. Before he started training he couldn’t run or ride a bike. Within his first year of training he was doing both and his coordination was greatly improved.
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May sound odd but my wife used to have that problem until she was diagnosed with congestive heart failure, which is common for people with or without FA. She was prescribed ferosimide (hope I spelled that right), it’s a water pill/lasics,(in the morning) and it helps get rid of fluid build up. And that helped her tremendously. She almost never has “accidents” now. And since the Dr tried to kill her which ended up killing her large intestine(she has an ileostomy), because of that she has to make sure she drinks a lot more than she used to. That made her have accidents a lot but since the water pill she doesn’t hardly ever.
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Have you been checked for diabetes? When my wife’s sugar is too high she is tired more often. From what I understand diabetes is common with FA. When she has her sugar under control she sleeps about 7-8 hours and is fine most of the time. One medication she is on requires at least 7 hours of sleep after taking. Being active really helps also believe it or not. To a point being active helps alieviate tiredness and helps you to get a better night’s sleep so you don’t get tired during the day. If she doesn’t make herself do something everyday I make her. It’s not just the exercise it’s just doing something to keep yourself alert. Just getting outside and cruising up the sidewalk in her wheelchair. Going to visit a neighbor/friend. Sit in front of her aquarium and laugh at silly things her fish does. Etc. Etc. (I put together 2 large, 1-55gallon and 1-75 gallon with a working sand waterfall, both with live plants). Doing things like reading or watching TV seems to make her more tired. When I was gone getting our trailer/home built she said she slept about 10 hours a night and napped a lot because all she could do is sit in her room and play on her phone and kindle because no one would let her do anything. No one would take care of her aquariums so she watched her fish start dying and depressed her so she couldn’t even do that.
Hope this helps. -
Oh and before “attaching” the stylus to her(before the doctor tried to kill her) . I took some JB weld (clay like substance that gets extremely hard when it dries) and made a ball and put it near the tip of her stylus, an ink pen, fork, and spoon so she had something to grip. Worked great. She was able to somewhat write and she could eat by herself much easier.
Side note : She had some silverware that had big soft rubber grips on them kinda like bicycle handlebar grips. She never liked them. I took one of them off and made an insert for it and she has used it as her joystick on her wheelchair for 5 years now after trying just about every type made including a couple I made. It is mounted sideways like a T. -
Speaking of writing…
A little news flash most don’t know.
Since my wife no longer can write we had a ink stamp made for her to “sign” her name with. The ADA states that it is legally binding for someone to use a stamp who can’t write. We were also told by an attorney that is so. But yet many places will not accept it as a signature.
Extremely frustrating. Especially when it is nearly impossible for her to hold a pen up enough to even scribble a “signature”.
She uses her stylus kind of sideways on her phone and kindle and to try to write with a pen sideways just don’t work. Pens aren’t made to do that.
To not be able to write and to have places put her through the embarrassment and break federal law is sickening. -
Not necessarily for writing because she no longer can, but I attached a stylus to a stretchy (fancy) hair band with some strong string and she wears the hair band on her wrist (loose fitting) as a bracelet so she doesn’t drop it. Since over 90% of what she is able to do anymore involves her phone or kindle it is a necessity for her. We tried a lanyard type deal around her neck but that was more uncomfortable for her and seemed to interfere with activities too much.