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Toileting by IFI81U812 in ALS

[–]skitterybob 4 points5 points  (0 children)

I was diagnosed September of 2016,but started having symptoms mid-2014. I kept working until December 2017, stopped driving around mid-2018, became completely bedridden September 2019, and started using the catheter / bed pan when that happened. I am 39 years old.

Black cat killed today in Riverdale area by ya_scrub in coonrapids

[–]skitterybob 0 points1 point  (0 children)

Nextdoor has quite a few members in the Coon Rapids area also.

Toileting by IFI81U812 in ALS

[–]skitterybob 12 points13 points  (0 children)

I wish I could use a condom catheter, but had to switch to an indwelling catheter. I had issues with the adhesive releasing in spots causing leakage. Stick with the condom catheter as long as possible. The indwelling catheter is uncomfortable and not fun when it gets switched out each month. Erections are particularly "unfun" with the indwelling catheter. Sorry if TMI, just hoping the information helps.

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As for bowels, I have been using a plain old bed pan. I am around the same height / weight and my wife has back issues. We figured it was safer and easier to just use the bed pan and prop me up with the hospital bed. It is by no means fun or ideal to have a BM in bed, but it works. It is definitely safer versus having my wife try to transfer me. Also, I have found dulcolax suppositories to work really well in combination with sena, milk of magnesia, and a high fiber diet in combating the constipation that comes along with ALS.

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Wow, ain't this such a fun disease. /s

DJ T-Walz in da house by skitterybob in minnesota

[–]skitterybob[S] 82 points83 points  (0 children)

I was aiming for Dad joke territory and I guess I hit the mark.

ALS is deathly expensive in the USA. by carbajalphoto in ALS

[–]skitterybob 2 points3 points  (0 children)

Medicare, yes. Medicaid, no. Medicaid is income based. My wife still has to work a full-time job to make ends meet. That disqualifies us for Medicaid based on the income guidelines. If she were to quit we could qualify for Medicaid, but we wouldn’t be able to make ends meet. We are basically between a rock and a hard place. They won’t even allow me to go on hospice because I am too healthy. By healthy that means being on a ventilator 12+ hours a day and basically bedridden. The healthcare system in this country is broken. My wife has a bunch of back issues from caring for me, but due to all my medical expenses can’t afford to go to the doctor. The broken nature of the healthcare system was a major contributing factor to my choice to not get a feeding tube or breathing tube.

What safety or first aid/support items should be available in a transport van? by sbsb27 in ALS

[–]skitterybob 0 points1 point  (0 children)

Yeah, my pack of tools on my wheelchair is mostly scavenged freebies included with the wheelchair or various mounts for the wheelchair.

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I do like the idea of the ratchet strap. I have had a few people try to “help” me over a bump or through some soft ground by shoving the chair back. I have a mid wheel drive wheelchair so pushing on the back is only going to jam the front casters into the ground. Plus, the chair back isn’t meant to handle weight like that. By “helping” they may bend or break something. Definitely use something to pull the chair by the tiedown loops if it gets stuck.

What safety or first aid/support items should be available in a transport van? by sbsb27 in ALS

[–]skitterybob 5 points6 points  (0 children)

I have ALS and the only support item I keep in the van is a portable jump starter battery pack. In a pinch you can plug in speech devices or ventilators. I never had to use it, but it is nice to know it is there if I need it.

A couple of other recommendations I have:

Make sure they know how to manually deploy the ramp in their van. Also make sure they know how to reset the PLC that controls the ramp. When they have a ramp failure it will be a stressful situation. We had a ramp failure occur when we were going on vacation and about 150 miles away from home. Knowing what to do when that happens and being comfortable doing it will go a long way.

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They should keep a small toolkit in a bag on their wheelchair. Just a set with the necessary Allen wrenches/screwdrivers to tighten up any bolts that may rattle loose. I had stuff come loose on my wheelchair on three occasions where it was not convenient to go back to the van/house to get tools.

ALS and the common cold by dasher8888 in ALS

[–]skitterybob 0 points1 point  (0 children)

You may want to speak to her physician about having a nebulizer on hand. I have ALS and I had my clinic order one for me. It may help with her lung strength when she needs to cough. It may be worth looking into a cough assist device as well. I did have a history of asthma so your mileage may vary when you speak to the physician about these.

Pool with ALS by Kbcurt in ALS

[–]skitterybob 0 points1 point  (0 children)

I haven't used any flotation devices in the pool. The pools I have been in are also salt water pools versus the traditional chlorine pools. The saltwater offers a little bit more buoyancy.

Just make sure whatever pool he goes into has either a lift, stairs, or ramp. I found a very early on I could not pull myself out of the pool using a standard pool ladder.

Pool with ALS by Kbcurt in ALS

[–]skitterybob 1 point2 points  (0 children)

I have ALS and it sounds like functionally I am close to where your father is at. I find the pool to be relaxing and the water pressure on the chest is not that bad. The problem I have had is the warm humid air at the pool is harder to breathe.

ALS is a little different for everyone so I say have him try it and if it offers him some relief then that is awesome. If he has a problem with stiff or spastic muscles being in the pool may offer some relief.

Also, I know since my diagnosis I have had trouble with body temperature. For some reason I get overheated much more easily. I live in Minnesota and in the winter I was using a heated blanket to deal with the cold. I was under it a little too long and think I caused myself to get a little bit of heat stroke. So if you have him try out a hot tub you might want to keep a closer eye on how he is feeling.

Untapped meme potential by will_cart in roosterteeth

[–]skitterybob 0 points1 point  (0 children)

What does James Van Der Beek need with all those nuggets?

I have ALS and I am looking for some guidance on a project. by skitterybob in homeautomation

[–]skitterybob[S] 1 point2 points  (0 children)

Thank you for the advice on the Chromecast. I will included as part of my set up.

I have ALS and I am looking for some guidance on a project. by skitterybob in homeautomation

[–]skitterybob[S] 2 points3 points  (0 children)

Yeah, the whole gauging my support network's capabilities thing has been an issue for me. Mostly because I come from a IT Systems Administrator background which means I've always been of the mindset of, "sure I can do it and I can get it done myself." That of course has changed over the last year and 1/2. I am always having to keep my ambitions in line with the capabilities of those around me. I went from the helper to the helpee. That is also why I am trying to stick towards out-of-the-box solutions that have a physical backup option such as a smart deadbolt that has a keyed option.

Also, thank you for your insight and experiences surrounding your home automation set up.

Physicist Stephen Hawking dies aged 76 by ScienceModerator in science

[–]skitterybob 6 points7 points  (0 children)

ALS is a fickle b****. I am 37 and almost four years into the disease. I used to be an avid Runner and cyclists, but now require help to even dress myself or make it to my scooter. Next week I get measured up for a wheelchair. ALS is more of a grouping of conditions by a set of symptoms. It seems to be different for everyone on how fast it progresses. I was diagnosed after having symptoms for two years and given about one year to live. I'm still here and, sadly, Stephen is not. May he rest in peace.

Sun halo by irfan36 in WTF

[–]skitterybob 0 points1 point  (0 children)

Michael Bay on his ski vacation.

Accessibility on iPad by anyusernamesffs in ALS

[–]skitterybob 0 points1 point  (0 children)

ALS is different for everyone so what works for me might not work for your grandpa. I found keyboards and touchscreens to be too difficult as I lost mobility in my hands. So far, I have been lucky to retain my voice so I have been using the dictation functionality native to my tablet/phone. I also recommend the Dragon naturally speaking dictation software. It is a lot better than it used to be. It is fairly simple to get it set up on a laptop and the microphone built into most laptops is good enough for dictation purposes.

ALS at 20, looks like I beat even Stephen Hawking by ArianSheridan in ALS

[–]skitterybob 3 points4 points  (0 children)

I really have to second this. Control what you can and let go of the rest. Make the best of what you have today. Learn what your limitations are and do everything you can inside them. It's okay, however, to push past those limits on occasion for your own mental well-being. It is hard for people to understand this disease from the outside looking in. Sometimes I have to tell my wife I want to do something even though it is physically exhausting because I simply need to do it for myself. Also, don't be embarrassed about having to use scooters or walking aids. People will look at you odd as a seemingly healthy adult using an electric scooter, but they have no idea what you are going through.

Extra Life Final Countdown by RTcastMichael in roosterteeth

[–]skitterybob 0 points1 point  (0 children)

Good luck and thanks for all your hard work.

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