Patrick, my furnace is old as well. My Nest smart thermostat works with it. Of course the cooling function doesn’t work as my furnace doesn’t do that, but otherwise it works. My uncle replaced it, so I don’t know much about the electrical side of it. There was the two wires like Robert’s though. My thermostat has a battery backup, but one…[Read more]
Lately I’ve been seeing a lot of commercials promoting various smart home devices you can voice activate. Most recently a faucet, shower and even washing machine. Of course for me they’re appealing for more than just convenience as the commercials suggest. However the price tags are usually well out of my range. Have you guys tried any sma…[Read more]
Adnan, I agree many of us have a special bond with our parents. They care for us and about us our entire lives. Alyssa, it’s good you’ve at least discussed it. It gives our parents piece of mind to know we’ll be taken care of. Talking about it is a good first step.
Thanks Patrick! I don’t think it’s a topic that’s discussed much. Good suggestion in regards to estate planning as well. After my dad passed my mom met with a lawyer to discuss things in the event something would happen to her. Not something you want to do, but certainly gives you piece of mind.
With the impending blizzard, it certainly sounds like something to look forward to. Tempted to stowaway with you guys, lol. We don’t travel much, so I don’t have good advice for you other than to say have fun!
Thanks for all the info everyone! Rachel, how long have you had one? As Halsey mentioned I’m not crazy about the idea of surgery even if it’s just minor. Having a foreign object and another hole in my body makes me hesitant as well. I still hate my feeding tube after all. It is great to have options though as Adnan pointed out. As Kelly…[Read more]
When you have a disease that’s considered the number one genetic killer of infants, getting old doesn’t cross your mind that often. At least it didn’t for me. If I didn’t think about aging I certainly didn’t fathom my parents getting old. Now that I’m 40 though it’s actually becoming reality. My Mom is approaching 68 as her birthday is l…[Read more]
For those of you who don’t know SPC stands for suprapubic catheter. Until a few years ago I had no idea. Since then I’ve learned that it’s an alternative to traditional catheterization and empties the bladder through a tube that’s inserted through an incision in the belly. As such it requires a minor surgery. As opposed to a tra…[Read more]
Yes, I know this is a recurring topic. With that said It’s also an important one. It’s been almost 3 years since my last hospitalization and I want to keep it that way. Monday a PCA called out with a sick kid (a different one than came to work with a cold.) The next day she called out again because her kid was still sick and she felt unw…[Read more]
I know both Kevin and Ryan have a JACO, but not sure they had to go through the appeal process. Are you a member of this group https://www.facebook.com/groups/jacousers/ They might have some good info for you. My suggestion is to start with a list of everything you imagine using it for. Anything that increases independence or improves safe…[Read more]
Thanks Tracy. Ha, ha I have driven around with a tack in my tire before. Luckily my tires are solid so no damage done. I also have a tool with a magnetic end. It is helpful, but is a little heavy and surprisingly I haven’t found much that it sticks to. We certainly have to be resourceful. Another of my favorites is a fiberglass arrow shaft…[Read more]
Hey guys! I wanted to share this article I came across on social media. You can read it here. It talks about what Roche is doing to provide access to risdiplam globally through a Pre-Approval Access/Compassionate Use Program.
Hey everyone! Hope you’re all having a great start to the new year.
The first episode of Dose of DeAnn for 2020 is live. As some of you may know, I lost my service dog, Roy, in November. In this video I tell you more about what happened. I address the question of whether or not I’m getting another service dog…[Read more]
Oh yes, you know the dog must be guiding us in our chairs. I’ve gotten that one too. As well as being confused with other individuals in wheelchairs. I chalk it up to folks being naive. As they get more exposure to situations they can learn. It sure can be funny though.
70 degrees! Okay, I’m just a tad bit jealous. Around this time every year I go a little stir crazy. Last Friday it was a sunny day, so I planned a few errands with my mom. It looked nice but it was COLD. Five degrees or so. Needless to say 5 stops turned into 2. I try to keep busy to stave off the winter doldrums. I have lots of projects…[Read more]
Kelly, when I despised my previous chair I actually started the process at about 4 1/2 years, so the minute I was eligible it was being processed. If there’s comfort (risk of pressure sores, pain etc.)/safety issues or problems with the chair sometimes they can push it through sooner as well. I’d certainly be looking for a rep since you’re in a…[Read more]
The DME guys should be able to adjust the sensitivity shouldn’t they? I’m not familiar with that type of joystick or Permobile or even fwd. I’m old school & have rwd. Hated the mwd I was stuck with for 5 years. I can relate to Kelly. My previous chair I hated from day one. I was in tears as well. Although I made it work, 5 years couldn’t…[Read more]
With the risk of dating myself, do you remember the game Operation? You know the one that buzzes if you’re not steady plucking bones & organs from the “patent?” Because of my dexterity that game isn’t my forte, but it crossed my mind recently. My PCA came to work and this time admitted when I questioned her stuffiness she indeed has a cold.…[Read more]
That reminds me of when my twin nieces were little (they’re 15 now.) All I had to do is break out the stern voice and they’d listen better than they would to others who actually could take away the toy or put them in timeout.
Alyssa, yes I have much more of an appetite since starting Spinraza. Before Spinraza I could never figure out how people could snack so much. Especially in the evenings. Now it’s like 8 o’clock rolls around and I’m thinking I could use something to eat.
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