September felt like it went by in 4 seconds. Anybody else feel that way? I love the ber months in New England, but hate that they bring cold and flu season with them. It’s a bittersweet feeling, but I’m still ready to make the most of the rest of the year. ? With a new month ahead, we’d like to warmly welcome our newest members from last month. @Videl419 @Cindy @Maryvegas @mai @Sarah.kh @Dill Please feel free to introduce yourself! Here are some prompts to get you started, but feel free to tell us what you’re most comfortable sharing. Where in the world are you from? Do you have SMA or know so ..read more

Great to hear ..read more

Yes, it’s been approved twice now here in MN by Medicaid this year. Both for individuals with type 2 SMA. Tentative install date for me is next week! To me the hearing is a scare tactic to stop us from pursuing it. I don’t even think they looked at my initial appeal documentation. For my hearing I was prepared to argue several points. Leaning heavily on medical necessity and safety. You can also argue it lessens the feeling of being a burden because you could accomplish things independently you would usually require assistance with. Plus wheelchairs are covered to compensate for lower limb imp ..read more

I know I said I was giving up on JACO, but I heard from my liaison that MN Medicaid recently approved it! So I decided to go through with the hearing. It was initially scheduled for July 27th, but they never sent me the denial paperwork, so it got moved to mid-August. I’ll let y’all know what happens ..read more

I’m a very routine person ..read more

Interesting, I’ll have to try that time trick.  You’re right, they usually do want to leave on time ..read more

I like to establish routines because, eventually, my caregivers will get into a flow of doing the same tasks each day. I feel as though this creates efficiency and, ultimately, saves time ..read more

When I need someone to get faster at doing something, like help me go to the washroom, I will leave the last 15 minutes of my time with them to get it done. They will want to get out on time, so we will accomplish the task in 15-20 minutes. A couple of days later I will only leave 10 minutes of my time with them to go to the bathroom. Again, they will meet that time if they want to leave on schedule. Another thing I have done is get them to shadow a staff member who can do things quickly and give them some tips. This is after having a conversation with them about the goal to have a task comple ..read more

Me too. You’re not alone my friend ..read more

This is the burning question of my entire life (regarding any virus) and I doubt it will ever change. I just miss the pre-pandemic version of me when every day was a calculated risk and I was ok with it ..read more