[mike-huddleston]

Born in California, moved to Hawaii, then Maryland (dad was in the Air Force).  Still live in Maryland,  maybe 15 minutes south of Baltimore.  In the triangle of B’More, DC, and Annapolis.  🙂

[mike-huddleston]

I think making an attempt is what we can do.  Sure, we have more to deal with, but that’s not a competition.  We have the cards dealt to us, make the best of the situation.  For me, I exercise – a lot – and always try to carve out time for that.  1.5 – 2.5 hours per day, even on days when I have PT, one land and one aqua appointment per week.  That takes an effort.  I could find reasons to not exercise, but I don’t because it’s important to me and my well-being.  And my long-term health.  I carve out time to read – every day.  And Carole mentions meditating, which I do periodically, but would like to be better about it.  But that also doesn’t mean you have to do 30 minutes a day.  Start with 1 minute per day.  Do that for a couple of weeks.  Then increase to 2 minutes.  Just focusing on your breaths, in and out.  Still your mind and be present. Even a minute is incredibly challenging, but it can be done.

And I work full time.  So, personal growth comes in many forms.  And it involves sacrificing something, the old opportunity cost.  If you’re doing A, you can’t do B, etc.

My secret?  I never watch TV during the week unless I’m off work on a given day.  Never.  It’s the only way I found that I don’t just sit and stare at the TV instead of doing things that are more important and beneficial to me.  And I realize that won’t work for everyone either.  But maybe turn it off 30 minutes earlier or on 30 minutes later than usual.  Make the time.  It’s there, even in small amounts.

[mike-huddleston]

Hey Alyssa.  I hope you’re doing well.

For me, the way to respond is to take the higher road.  Whether talking that way, or just as offensive IMO, asking the person with me about me as if I have no ability to comprehend.  If you respond as a mature adult, that should be enough of a clue for them to stop.  And hopefully they have enough self-awareness to stop. However, if they persist, that’s another thing altogether.  Perhaps it’s an opportunity to educate gently or firmly, depending on the person and how they’re acting, but still not rudely.  Again, be the better person.  And if they still persist (ugh), an opportunity to excuse yourself and not subject yourself to that kind of verbal assault.  Because at that point, the level of offense is too high and you won’t be able to carry a conversation anyway and they are either completely ignorant, rude, or oblivious – or some kind of combination.

I’d like to think most of these offenses are not mean spirited.  Taking the high road, being our better angels, conveys this and hopefully rectifies the behavior.  Most folks are simply unaware or uncomfortable conversing with people who are not like them.  They may experience this awkwardness in many exchanges with people different than they are.  And if it’s a rare interaction with someone in power chair, perhaps their assumptions are based on nothing more than a character they’ve seen in a movie or on TV, so really have no idea. Giving them an “out” and saving face without humiliating or being rude has always seemed to work better for me in most situations.

[mike-huddleston]

Hey Daniela and welcome.

This past September, I had “emergency” cholecystectomy as I was inundated with gallbladder stones and my gallbladder was gangrenous.  Nasty stuff right there.  My symptoms came on suddenly and severely.  Unlike DeAnn, and I feel very fortunate, I was able to have mine removed laparoscopically.  I do not use a feeding tube and am a type 3 who uses a power wheelchair.  They did put me under and that went well.  No issues and I was able to resume normal activities within a few days.

DeAnn gives excellent advice; I just wanted to provide feedback on a recent less complicated and thus to me, a more positive experience.

Best wishes and I hope it goes well.

Mike

 

[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 understand it, is more connotative.  Of course SMA is part of you you are, it’s not all you are.  So although it does shape you and has been such a main part of helping you become the person you are today (and for whom we are thankful!), you are so much more.  You can define yourself any way that you’re comfortable with. My main thought would be that’s fine, as long as others don’t define you in that limited way – or you don’t allow others to define you that way.

[mike-huddleston]

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 or so each week I spend in the pool allows for my progress in a safer manner than land therapy, which I also do weekly.  Short of drowning, it’s hard to get hurt in the water.  🙂   That hour, even though I am exercising the entire time, is heaven.

If the pool has a lift for transfers and lacks a sling, those can be had at Amazon for about $50 or less.  Not trying to spend your money for you, but if it’s something you decide to pursue more than a couple of times, it’s a worthwhile investment.

Definitely hoping to hear more about this, meaning we’ll know which side of the ledger you came out on. I hope it works out for you.

[mike-huddleston]

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 theme when those in the disabled community are portrayed in a negative light.

I took a class at work yesterday on D&I, and one of the exercises was discussing what our perceptions are on different groups of people.  One of the groups was disabled people.  Through media, such as the news, and representation in books, TV shows, and movies, there is a general negative impression of people with disabilities, as well as people in other groups.  Overcoming those perceptions is an opportunity we have on a daily basis.  No, it’s not as far reaching as movies, TV shows, and some books, but the journey of a 1000 miles begins with the first step – or roll 🙂

Developing allies in other marginalized groups is one way to do that.  I have been very fortunate to recently have been selected as a company wide co-chair for our new ERG on associates with disabilities group.  We are a national company with over 40,000 associates.  I view this as an opportunity to raise social consciousness and awareness, and to educate.   We are not sponges on society, our lives matter, and we add value every day.  Don’t ever let inaccurate representations make you feel otherwise.   Imagine how it is being in another marginalized or disparaged group.  Increase your empathy and understanding for those groups – and seek their understanding of ours.

Two movies that I thought were good in their portrayal of disabilities were The Upside and My Left Foot.  I’m sure there are many others.

[mike-huddleston]

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 enjoyable, but would be better IMO with a slightly higher mix rate.

[mike-huddleston]

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 interaction on Thursday will be via chat.  Please stop by if you’d like to. 🙂

[mike-huddleston]

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 to put on, but nowhere near as bad as compression socks, are “sports socks”.  These are knee high and provide light compression support.  For me, they do an amazing job of reducing the swelling around my ankles.  Many different brands on Amazon for these as well.  Wander is one brand I use, as well as Weierya.  The latter is generally categorized as ski socks, but they work just fine.  Just avoid the ones with a bit more wool in the summer months, unless you like your feet to be super toasty.

Hope it helps.

[mike-huddleston]

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 when I first bought an accessible van, and at the end of 2020, I had to get a replacement locking mechanism since I got a new chair (originally a Quantum and now Permobil).  There is also a manual override lock release on the locking mechanism itself that would require someone else to engage that as I am unable to reach under my chair while in it. Hope this helps some.

[mike-huddleston]

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, admittedly, a completely different perspective than Crystal and others who are dealing with much more pain.  Just wanted to get that out there.

My perspective is of an over 40 year patient.  I’m 58 and was formally diagnosed when I was 16, but knew there were issues before then. So, the teenage years bring a lot of self awareness and potential body image awareness.   That can be difficult enough for those not dealing with a progressively degenerative condition like SMA.  Add SMA to the mix, and it can be, and often is, overwhelming.   I played a LOT of sports when I was younger.  Just when I was coming into an age when my abilities should have been improving, they were regressing. I was having trouble running, getting up from the ground, squatting and then standing up.  All things that I’d done without much thought or hesitation before.  Then you start adding in difficulties getting out of a chair, or climbing the steps to the school bus, and then just going up regular steps, formerly taken two at a time, now requiring the hand rail to do individually.

This certainly caused a lot of self consciousness. That can lead to anger, frustration, and maybe even some hatred toward the seeming betrayal being committed by your body.  Way too much to comprehend and process.  So, I will not gloss over and pretend there weren’t times when I was angry, because I was.  And I was frustrated.  Girls I liked and even others guys starting treating me like a freak of nature – and not in some kind of cool X-Men kind of way.  Kids can be cruel.

But then I realized a few things.  One, no one wants to be around someone who is angry or frustrated all the time.  So, I started focusing on the parts of my personality that allowed me to make friends and be the person I wanted to be around.  Crystal, that’s the part of your personality you like and makes you cool to hang around.  Two, I realized that my body is only a vessel that allows me, yes with challenges, to make this journey of life.  I can still work and contribute in that way.  I have a loving wife, we own a home, and two cars, and we find ways to enjoy life.  And finally, three, I realized there are so many people much worse off than I am.  Sure, that doesn’t help manage the day to day pain, but it does help with trying to keep things in perspective.

Not sure if any of this helps, but I hope so.  And Crystal, I hope you’re able to get to a place where your pain is more manageable and you’re able to focus on self love, and not hate your body. Deal with the anger and frustrations, because they are real, but don’t hate yourself – you have so much life in front of you and so much to offer people and this world.  Embrace the opportunities that life will provide you.

 

[mike-huddleston]

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

Contact Us (biogen.com)

 

[mike-huddleston]

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 their headphones, or just in a hurry.  The person who acknowledges you in a baby voice is making so many negative assumptions about you as a person.  It’s the same mindset, at least to me, that results in people talking with someone who may be with me – about me:  “How is Mike doing?”  Ugh….I think most of us just want to be treated like an adult human being.  No more, no less.

[mike-huddleston]

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

[mike-huddleston]

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 available.  And yes, things are trending downward, which is a good thing, although I am cautiously optimistic between spring breaks and some states easing restrictions while so many residents are yet to be vaccinated.  So, still using my same approach and safeguards.  My wife has received both doses as she works in a dental office.

I thinks SMA has provided us with years of practice for some of the hardships of the pandemic and restrictions.  Not directly, but indirectly.  What I mean is I’ve watched my body lose functionality over decades.  I was diagnosed at 16, symptomatic for a couple of years before that, and ambulatory until 2015 when I was 52.  So, although there were periods of frustration, I chose to focus more on the things I could still do.  I think that in part had a mostly positive effect on my outlook.  Similarly, with the pandemic restrictions, I tried to focus on what I could do, not what I couldn’t.  I have an appreciation for 2 more hours of sleep everyday and NOT getting up at 4 a.m. on days going to the office.  And I live in Maryland and have a nearly 40 mile commute to the office near the MD-DC border.  So, I’ve also eliminated about 2 hours or more daily by not commuting.

This is not perfect, but it does allow me to appreciate all I do have and focus on the positive.  I do miss some of the socialization aspects of being in the office and chance meetings of long time acquaintances and friends.   I’ve worked there over 34 years, so know a lot of people.   So, to me, this isn’t something I’m clinging to this week, but has been a longtime trend of trying to focus on the positive things and little joys of life each and every day.  Maybe it’s weird that SMA has helped prepare me a bit for the COVID restrictions.  I don’t know, as I try not to over analyze it, but it helps and seems to work for me.

[mike-huddleston]

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 that’s probably because I could neither remember nor pronounce “Trendelenburg”.  🙂

A couple of good laughs in that linked article Kevin…thanks.

I’m pleased with how I’ve tolerated the injections, save for the first maintenance dose due to sitting up after about 40 minutes.  The two hours is a reaction to that, along with the fact that I actually drive to and from each injection appointment.  Ultimately, I’m anxious to hear the results of the DEVOTE study. although that may be some time off.  But since Spinraza has been effective, albeit mostly concentrated to my legs (Yay!), I’d like to explore these type of steps before making such a (to me) huge decision to switch to Evrysdi.  But admittedly, there is some appeal to distribution via the bloodstream and daily doses.

Stay well everyone and thanks again!

[mike-huddleston]

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 entry.  But I drive from my wheelchair, so was necessary in my case. I do use the EZ Lock, and although expensive, it is a huge time savor for me rather than doing the 4 tie-lockdowns every time I’m in and out of the van.

Your husband is right in that there is a risk of failure with the power ramp, but there should be overrides provided should that happen.  My van was bought new in 2015 and there have only been a few times a year when it has not worked.  The override for mine is also automatic (Sure Deploy System) and works well. Not sure what other manufacturers provide.

A couple of other items to consider. Forgive the question, but will your daughter be able to drive at some point in the future?  If so, how long will that be?  In other words, if just a few years, you may want to consider the side entry to keep that option available.  There will still be the back seat for your other children or other passengers. She could lock in position behind one of the front seats. If more than 7 or 8 years away, this decision can be deferred for a future vehicle purchase.

Also, the rear entry has some pluses in parking – you don’t need to find a spot with a wheelchair access area between parking spaces.  The side entry power ramps extend out so you need at least 6 feet between vehicles.  But Dennis’ point about curbside (parallel) parking is true.

And finally, power vs. manual, power is beneficial in that you can open the ramp door and extend the ramp remotely, so if it’s raining, you can open it and then make a mad dash for the van and your daughter can just zoom right in.  The rear door lifts up like it currently does, so there is some protection for the ramp and wheelchair user either way.

Hope some of this helps. Good luck with your decision.  🙂

[mike-huddleston]

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 it is okay to recognize and acknowledge it.  Don’t beat yourself up for feeling the way you do, but realize that pain from grief eases with time, just like other life altering events that impact us so hard at an emotional level.  It’s not a death, but it is a significant loss from your perspective.

Your relationship with this friend will adapt.  As difficult as it is and will be for the near term, embrace the changes and explore options for maintaining that relationship in a way that works for both of you.  And after things settle down when we return to our new post pandemic reality, explore options locally that increase your opportunities for new friendships nearby.  As Kip says above, perhaps another door will open.

[mike-huddleston]

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.

[mike-huddleston]

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 the two items insurance would not cover: an elevator seat and anterior tilt.

Heated and cooling seats seem like good options, but heck, why not include the Shiatsu massage options for circulation and muscle/cramp relief?  Haven’t really thought about this, but if come up with anything, I’ll come back and post.

[mike-huddleston]

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.

[mike-huddleston]

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 things.  I am currently having treatment at an offsite Hopkins facility.  If we pursue the c-spine, she’s almost positive this will be on the Hopkins campus, where they have live fluoroscopy available.  This changes the way the drug is purchased and related administrative considerations.  Maryland is a bit goofy, so this just means more hoops to hop through.  Not sure how painful this would be switching to on vs. off campus.  But will at least have the conversation.  I love the results in my legs and am hopeful that alternating 1 out of 3 in the c-spine would provide comparable or at least better results/more stability in the shoulders and arms.

Stay safe and stay well all!

Mike

 

[mike-huddleston]

Thanks for your reply and thoughts, Lupa.  I was not aware of that for Kevin, 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 bearing even with the gains, I was thinking the risk of trying it once to see if there was any observable change may be worth it.  And I do recognize that one dose there may not be enough.

The info regarding higher concentrations near injections site is, and I hate to say it, the result of autopsies performed on Spinraza dosing patients who have unfortunately passed away.  That is the only “cell concentration testing” that I’m aware of.

Like you, I am interested in hearing the results of the DEVOTE higher Spinraza dosage study.  I’m not sure if the participant criteria changed, but last I heard you had to be ambulatory to participate in it.  But also interested to hear if there would be an increased cost factor.  It just never made sense to me that a 40 pound child and a 200 pound adult would have the same dosing needs, but I admittedly do not understand a lot of that from a medical perspective.

And finally, I am also interested in Evrysdi due to it travelling via the bloodstream instead of CSF.  But I have had positive results with Spinraza and there is a decidedly smaller group of Evrysdi patients and a much shorter experience period than with Spinraza.  Still in awe that we even have a choice.  🙂

Again, I appreciate your thoughts and input. So much to consider.