OK-I’m attempting to use my voice recognition software totype a post myself. For the record, I’d like to point out that I did thisyesterday but somehow screwed up and lost everything. So we’ll see how thisgoes. To be honest, it’s been so long since I posted that I don’t even know howthings have changed since my last post. So I’ll just update you with how thingshave been going lately.
First the Lotsa Helping Hands website. I’m sure all of youhave seen by now how this website works. Many of you have already signed up forstuff. It is been pretty amazing and humbling. The dinners, lunches, yard work,and beer runs (although I’ve had to take some of those away-more on that later)have been amazing. I’m sure I’ll say this a lot throughout this post, but I can’ttell you how much it means to both me and Becca. It’s been a great chance tostay in touch with people and reconnect with people that I don’t see often.When it was first set up, some folks were asking what else we needed that wecould put on the website. My big joke was that we should open a new category, “ComeAnd Shower Ben”. Ultimately, we decided not to add that because I was worriedthat all the activity would crash the website. Plus things like dinners andlunches would be neglected because obviously it would be the most popularcategory. (My apologies to everyone who’s heard that joke 100 times-I need tocome up with new material). In all seriousness, thanks to everyone who hassigned up. It has helped us more than you can imagine.
Now that school is almost halfway over, we’ve pretty wellsettled into a routine. We’ve had to navigate things will a little different becauseI really can’t be by myself for very long anymore. Thanks to an ALS grant, homehealthcare comes 5 days a week: Monday, Tuesday, Thursday, and Friday mornings,plus Wednesday afternoons. The mornings have been a huge help, because it wastough for Becca to get out the door on time and still get me ready in themorning too. After someone brings me lunch, when of my parents comes eachafternoon (except Wednesdays). Wednesday mornings a rotating cast of characterscomes to sit with me. (I always thank them for babysitting). Sometimes it’s friends,sometimes it’s family, sometimes it’s Duane. (Sorry buddy, I couldn’t resist-pleasedon’t sue me). So far I’m happy with the schedule. Hopefully, depending on myhealth, we can keep it like this for a while. Although, I think the biggestcomplaint people have is that they are forced to listen to my music all day.Actually, what am I saying, that should be the highlight of their day.
In terms of my health, it’s tough to know what to say. Afriend whose wife is going through this as well once said “well, it’s aprogressive disease, so it progresses”. I don’t really know of a better way toput it. My arms are pretty well out of commission. I can still run my chairwith my left arm, but sometimes I struggle getting my hand to the controller. Ican still stand (for a short time) but can’t take any steps. When I get out ofmy chair, I can pretty much only pivot. I can shimmy a little bit to move frommy chair to the bed (it’s quite a sight-I’ve always had moves that defy gravity)but that’s about it. And even that requires assistance. I’m having to watchwhat I eat a little more, as some things are harder than others to swallow. Howevermy biggest issue is sleeping. I wake up almost every hour at night and then ittakes a lot of effort for me to roll from my back to my side. The doctor thinksthat I’m waking because of my breathing so I’m in the process of getting aBiPAP machine to see if that helps. Of course, wearing a mask that I can’t adjustbecause I can’t move my hands might make me crazy. But I’m willing to give it ashot to see if it helps. I was also told that alcohol suppresses breathing so I’vehad to lay off a little bit (I used to say moderation shmoderation) it’srecommended that I have no more than 2 beers per sitting, plus the IPAs hit mea little harder. Occasionally, I actually listen. But actually, it hasn’t beenthat big of a deal as I think my going crazy days are behind me.
In rereading, the last paragraph kind of sounds like doomand gloom. But it isn’t quite like that. In general, I think our spirits arestaying pretty high. The kids are good at helping out, and of course Becca is asaint for all that she does. I’m much more high maintenance now, but Becca saysI’ve always been this high maintenance it’s just in a different way. I’m stillable to get out and see the kids activities (games, band concerts, etc.) I feellike we’re getting through this as best we can. All the support we’ve received hasbeen instrumental in helping us. Also, I really do appreciate all the texts,emails, and messages people have sent me. Usually, it’s really difficult torespond, but I can assure you I read them and appreciate them tremendously. So although I’m repeating myself thanks again.I can’t tell you how much it means.
So assuming I don’t lose this entire post, this hasn’t gonetoo bad. I like to say I will post more often, but I’ve promised that before.So in case I don’t post again for another 3 months, I hope everyone has a safeand happy holiday.
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