Mike Huddleston

Hey Alyssa –

I did, in fact, read your column.  And I enjoyed it. I left a comment, but it’s not available for me to retrieve and post here.  Basically, I understand where you’re coming from.  I think it’s mostly semantics.  Most people use the phrase “define you” as a more comprehensive, denotative meaning.  Your use of it, at least as I unde…[Read more]

Hey DeAnn –

I’m one of the aqua therapy advocates, having started it regularly in the fall of 2016.  The pool I go to has a chairlift, which works rather well.  But it is likely used a decent amount and thus maintained. I am also fortunate that I am able to transfer between my wheelchair and the chair lift with a slide board.

To me, the hour o…[Read more]

Interesting topic.  So, like Alyssa, I have not read any of those stories.  I did watch Me Before You and agree with the summary, but I admittedly don’t remember most of the details.  But the disabled character was wealthy and suddenly paralyzed, so a lot of his frustration and dismay seemed to stem from that.  But still, there is a constant the…[Read more]

Good seeing you and DeAnn at the social last night.  Unfortunately, I wasn’t able to catch up with DeAnn.  I think, and just my $0.02, they ought to make the breakout rooms a little smaller and a little shorter in duration.  We did two breakout rooms, and half the people from the room I was in first were also in the second one.  Still enj…[Read more]

I don’t have all of the details, but my PT at Hopkins who does my Spinraza related assessments and I were accepted to do a poster on my exercise routine and progress at this year’s conference.  We also did about a 5 minute video to go along with it.  We will be on line to discuss @ 2 pm (eastern/1 central) on Thursday.  I believe our in…[Read more]

Hey Brianna –

They are almost impossible for me to put on, so I don’t even try anymore.  The item Tammy refers to is about $10 at Amazon and supposedly works relatively well, but I couldn’t swear to it.

AmazonSmile: RMS Deluxe Sock Aid – Socks Helper with Foam Handles: Health & Personal Care

That said, an alternative that is challenging…[Read more]

Hey DeAnn –

I have an EZ Lock system in my van in the driver’s position as I drive using hand controls from my chair.  The button to unlock mine is on the dashboard, just past the handcontrols.  Adding after the fact is not an issue.  As far as the cost, it should be in the $1200 range or so installed.  Mine was just over $1000 back in 2015 whe…[Read more]

Definitely view it as an opportunity to educate, either with humor or more direct feedback, if/when the baby voice comes out, or if they talk to the person with me about me like I’m not there.

Probably not likely going to add much to this, but I wanted to reply.  Some amazing answers have been provided.

To me, and I know this is a huge difference, I am fortunate in that I do not deal with a lot of pain.  Some, but it is very manageable, and mostly without medication.  Very infrequently do I need something like ibuprofen.  So, adm…[Read more]

Sorry so late getting to this, but I’d also suggest contacting BioGen directly.

Contact Us (biogen.com)

100%, ignored.  But if I may explain why, because I don’t know if they are equally cringeworthy.  Ignoring me doesn’t necessarily mean anything related to my disability.  It could be, but I don’t care enough to worry about that.  That is on them.  I’m not fulfilled by being acknowledged by a stranger.  They could be an introvert, listening to th…[Read more]

Had not seen or even heard of this before.  Thanks for posting it up Alyssa.  Hits on so many stereotypes.

I have power adjustable footrest height on my new Permobil M3 that I got in December 2020.  With split feet rest!  🙂  Although perhaps I’m not understanding that – they rise and lower together  – it’s not independently adjustable between the left and right foot rest. I don’t remember asking for it, so maybe it was standard?  I had to pay for…[Read more]

Crystal – Thank you for your amazing post.  I am sorry to hear about your struggles with pain, but love the way you approach it and each day.

Hey Kevin – interesting topic.  So, I’ve been working full time from home almost a year to the day now.  My last full day in the office was Monday, March 16th, 2020, and I had to go back in for a few hours to pick up a few forgotten items later that week.  I am still not eligible for the vaccine, but will sign up as soon as it becomes av…[Read more]

Hey Dennis – nice to hear from you!  Hope you’re doing well.  Thanks for the reply.

I’m contacting my neuro this week to at least start the conversation on having something like 1 out of every 3 injections in the c-spine area.  My next one will be in May, then September.  I also mentioned this to my BioGen FAM who mentioned a few other thi…[Read more]

Thanks for the good comments and feedback everyone.  Ultimately, I want to consider all options potentially available to me.  This has helped tremendously.  Will have the discussion with my neuro prior to my next injection in May.

DeAnn and Alyssa, I lay flat for about 2 hours after the procedure. Have joked about being hung upside down, but th…[Read more]

Thanks for your reply and thoughts Lupa.  I was not aware of that for Keven, so hopefully he can chime in. Definitely understand there is a potential risk to gains by switching the injection site, but didn’t know what that would be if it was only one out of every three. Additionally, I do use a power chair full time, so since I’m not full load…[Read more]

Hey Aimee – Good topic.  As others have provided valuable insights, I’ll just add a couple of others from my experience or perspective. I have a Toyota Sienna with in fully automatic in floor system by VMI.  Side entry.  The side entry doesn’t seem to be an option for you with two other children as you lose the middle row seating with side en…[Read more]