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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 8 replies, 4 voices, and was last updated 1 month, 3 weeks ago by Patrick Lenihan.

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    • #24389
      DeAnn R
      Keymaster

      Do you look forward to getting a new wheelchair? You’d think it would be fun and exciting, but not for me. As you may know I’ve started the dreaded wheelchair process. First of all it threw me for a loop when I learned my occupational therapy office didn’t wear masks. You can see my reaction in my recent vlog. After composing myself I reached out directly to the occasional therapist. He agreed to wear a mask for my wheelchair evaluation and future appointments. Go figure, the day after the evaluation my state implemented a mask mandate. Oh well, good advocacy practice I guess.

      Overall the evaluation went well. Not only were measurements taken, features were discussed. My intention was to clone this wheelchair and add some features to enhance comfort and independence. Sounds good, right? Even the wheelchair rep sounded promising about it. After double checking they could get those features on that model he’d back to me. Then the call came. None of the features come on the model I want after all.

      It looks like I have a couple options. If I want to stick with rear wheel drive I can get most, but not all, of the options with the Quantum Rival. If I switch to front wheel drive I can get all the features I’m looking for. My last chair was a mid wheel drive and I hated it from day one. Therefore I’m hesitant to try front wheel. I just don’t think I’d be happy with the Rival though.

      While I contemplate my decision they’re going to check to see if they have a front wheel drive I can demo. Why can’t anything be easy? What’s more important for you, the drive or the features? Are you loyal to a brand? I forgot to ask if a cat bed attachment comes standard.

    • #24409
      Dennis Turner
      Participant

      I have only had a front wheel drive, so can’t really tell you the learning curve.
      I think i would hate midwheel drive because of them having all them wheels…
      Seriously, i sat in my front wheel drive chair and was able to roll around the busy rehab with it in seconds. Only took out a few dozen people and two walls.
      You are smart and will adapt.

    • #24410
      Patrick Lenihan
      Participant

      I  have never driven a front wheel drive chair. I do prefer rear wheel drive to center wheel drive. I currently have a Quickie S636 and I love it. Perhaps the options you want are available on the S636. It doesn’t hurt to ask.  You can check out the specs here :   https://www.sunrisemedical.com/power-wheelchairs/quickie/rear-wheel-drive/s-6-series

    • #24415
      Lupa F
      Participant

      I’m curious what kind of features the Rival doesn’t allow. I thought the Quantum bases were interchangeable with the seating options and the seating systems are where all the real options are. I’d prefer a rear wheel base, but we had decided on a permobil for my first chair so I could only choose mid or front. Front felt super weird, so I went with the only somewhat weird feeling mid.

    • #24416
      DeAnn R
      Keymaster

      Patrick, I’ve actually had a Quickie S636 in the past. Although I did like it, the motors didn’t hold up for me real well. How long have you had it if you don’t mind my asking?

      Dennis, thanks for the vote of confidence. I’ve been trying to envision using fwd in my house, and I’m actually thinking it might make some navigation easier. Do you ever have trouble pulling up next to things with the big wheels in the front? That’s my main concern.

    • #24417
      DeAnn R
      Keymaster

      Lupa, on the Rival I wouldn’t be able to get anterior tilt. That’s the tilting forward. I think it would be very beneficial for reaching things. Also, I wasn’t that crazy about how big and far apart the front wheels are. With that being the case I’m thinking I might as well try fwd. Although, like you said, I have a feeling it would be super weird at first.

    • #24418
      Dennis Turner
      Participant

      Actually, the big front wheels are set enough back that the foot plates go way beyond them. I have small “anti-tipper” wheels in front of the drive wheels that only touch the ground when i stop too quickly or go down too steep a slope, but even these do not go as far as my foot plates.
      My permobil f3 has the tilt function you were saying you wanted plus lift, recline, and so many other useful things. I have had a problem with the motor not working on the lift a few times, but only neede replacement once in 4 years.

    • #24420
      Lupa F
      Participant

      The front felt weird to me since I was switching from using scooters for the past 20 years to a chair and the scooters are like extreme versions of rear wheel chairs where you’re as far back as possible and all the clearance required is at the front. The front wheel chairs are almost the exact opposite so I was smacking everything with the back end. I think after I use the mid chair for a while, switching to a front wouldn’t seem so weird since the mid does have a bit in the back but not quite as much as the front ones do. If I ever get another chair, I’ll definitely try a front again. The front casters on the mid are really annoying.

    • #24421
      Patrick Lenihan
      Participant

      DeAnn, I have had the chair for 4 years and will be replacing the motors for the first time later this month. I ordered the new motors last Tuesday. I am really hard on motors and had to replace the motors on my previous chair which was an Invacare Ranger every 2-3 years. During the spring summer and fall it is not unusual for me to put in 20 miles per week of outdoor and off road trail driving on the chair.

       

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