One of the first lessons we learned was when something changes in your body it is a good idea to go to the doctor. He didn't go in in the beginning because 1- he just doesn't like to go to the doctor and 2- we figured it was something simple. He had never been sick! Not ever and I just want to add in here that he is not good at it! :) We have been married 35 years next month and in that time he had a couple of headaches that lasted 15 minutes (literally) and the Eifel crud (which is like the flu but your body is getting used to living on the top of the mountain after living sea level all your life).
Next thing we learned was that if you have served in the military more than 90 days they take full responsibility for ALS. Not sure why but Congress passed a law. So we got 100% disability and PVA advocates for us to get big things we need. Like they are helping us get a grant that will pay for a van for Dan to use with his electric wheelchair. The VA has already gotten us our wheelchair. The van grant is a LOT of paperwork! But we have everything in now and hopefully we will get it back soon. BTW: If you have been turned down before and have ALS the law changed back in February and you can get one now without having to have loss of limb. Which wasn't the case before.
Next thing was that the VA would have put our stair climber in if Dan had been able to get up and down from a chair by himself but he didn't need it then. Once he needed it (because he couldn't get up and down the stairs by himself anymore) then they wouldn't do it. So we had to pay for it by ourselves. So online we went. We found that you can get a used one and it doesn't matter why the more expensive sites say my brother, Jeff was able to install it in under 2 hours and he had never seen one before. So it is super easy! The more expensive and new sites say that you have to have a professional install it and want to charge you a LOT of money for that privilege. We measured it ourselves and told the store on the phone and within 10 days had it at our house and installed. It cost us $1440 for the climber, shipping and sales tax. We got the acron120 and it works awesome. We called 800-7901635 which is Ameriglide in NC. Dan loves the freedom and I love being able to get him up and down the stairs by myself again.
We are still waiting for the adjustments to our house to be made so he is on the main floor. This will include a wheel chair lift to get him from the family room, which we are making into a bedroom to the kitchen, living room floor. Another thing we learned was A- this takes a while to get everything done for it and B- It is better to adjust your home if you can. By the time we had we out and looked at other houses for over a month we realized that finding one that was already handicap accessible was almost impossible and next that we were going to put the same money in to adjust a new one as to adjust ours. Plus I don't have to try to move my husband. And since I already have so many changes I don't have to add another one. I also got to keep my support system, my church groups, and my home. Since VA is giving us a grant for that too we are doing the paperwork on that one too.
Last thing I learned recently Patience truly is a virtue. Dan is moving slower and I am having to learn to walk slower, be more patient when he talks, and wait for him to be ready to do what ever. Things I never thought I would do, I do such as wiping his nose, itching his underarm, picking him up (yes you do need a gaitbelt!), and putting his medication in his mouth, brushing his teeth showering him, wiping his behind. It is not easy but I love him and you do these things for the person you love.. Things I never thought would ever happen to him has and by extension to me. I am learning more every day!
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