Mike Huddleston

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]

Hey Alyssa. To me, plain and simple, you’re dealing with a form of grief.  There are many articles and sites about this.  I was overwhelmed with the volume of info by just googling, “grief when a friend moves away”.  Sure, you want to be supportive of her awesome opportunity, but there is still the pain you’re feeling at your loss.  It is real and…[Read more]

Hey Julio – just hopping in with my $0.02.  Last summer I upgraded (finally!!) from an iPhone 6 to the 2020 version of the SE model. Same exact size as the 6, but the latest chip set and much more memory.  It’s reasonably priced, can be charged wirelessly, but is not 5 G compatible.  If 5G is required and still looking at size, consider the iP…[Read more]

Hey Alyssa –

So, I don’t think you’re overreacting, but perhaps it would help to just accept this as a manifestation of this person’s biases and or their ignorance or insensitivity.  I know we often struggle with not wanting to be a burden to those helping us, so comments like this are pointed and hurtful.  But it is on him, not you.  We can’t co…[Read more]

Hey Brianna –

Sorry you’re dealing with this.  From my experience, not with Spinraza, but for the two power wheelchairs I’ve acquired through insurance, the appeal process is not effective.  They usually just drag it out with what seems like an objective to beat you (mentally) into submission.  And the longer they can deny or delay your re…[Read more]

Hey DeAnn – Thanks for posting this as it’s a critically important subject. Oh, if it were 5 years ago when we weren’t even sure treatment options would be available. 🙂

Like you, I am doing well on Spinraza with little if any side effects and I (so far) have handled the injections well.  Including the initial loading doses, I’ve had a total of…[Read more]

Hey Kevin. Hope you’re doing well. Nice adaptation. 🙂

Fortunately I already have a LOT of exercise equipment at home, including weights, straps (therabands), exercise balls, a NuStep recumbent stepper as well as a Shuttle Mini Press leg press machine.  I do light weights and a host of stretching and ROM exercises.  These workouts last between 2…[Read more]

I’m getting treatments at an offsite outpatient facility at Hopkins.  I was just contacted for my next maintenance dose, scheduled for May 20th.   This will be exactly 16 weeks from my previous maintenance dose at the end of January. Also received orders for pre-treatment labs.  In speaking with others being treated through Hopkins, I’m not aw…[Read more]

Happy New Year!  Low key transition to the new year and decade for me.

Thank you, Alyssa.  Very kind of you.  And I understand these are aggressive goals, but I will continue to push myself and take advantage of every opportunity presented.  And choice in treatment protocols is overwhelming at times.  That we are here today is simply amazing.  I’m not quite at the place of Lou Gehrig when he made his “luckiest man”…[Read more]

Thanks DeAnn.  Yes,it is amazing to me that this choice is even a possibility.  I’m 40 years in from my diagnosis and lost a brother with SMA back in 2004.  That we are here today and soon with Risdiplam is incomprehensible at times.

I will not speak for her, but I got the feeling that there seems to be some indications or evidence that Ri…[Read more]

Hey Alyssa –  I just posted under Risdiplam section that I’ve had my 4th maintenance dose in October.  So far, most of my gains have been in the lower body: increased strength and muscle mass in my quads, VMO, hip flexors, and anterior tibs.  Some improvements in upper body strength, but less significant and not as measurable.  I’m still using my…[Read more]