• 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…[Read more]

  • Anyone heard of or tried kratom? It’s a herb along the lines of Marijuana but you don’t smoke it.

  • 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,…[Read more]

  • 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…[Read more]

  • 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…[Read more]

  • 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…[Read more]

  • 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

  • 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…[Read more]

  • Clester replied to the topic Married life in the forum Relationships & FA 2 years, 3 months ago

    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…[Read more]

  • 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.

  • 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…[Read more]

  • 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…[Read more]

  • 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.…[Read more]

  • 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…[Read more]

  • 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…[Read more]

  • 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…[Read more]

  • 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…[Read more]

  • 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…[Read more]

  • 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…[Read more]

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