[mike-huddleston]

For me, I don’t shy away from it, but don’t offer it unless either specifically asked out of genuine concern or curiosity, in which case I use it as an opportunity to inform or educate, or in a medical setting. Most people don’t grasp the differences between conditions anyway. You can tell the difference by how much their eyes glaze over if you start to go into even the slightest amount of detail. I pay somewhat close attention to this to help determine if they are genuinely concerned or interested to know more. I can give the 30,000 foot view, reassess, let them ask more questions if they choose, and then proceed accordingly.

If they are just being nosy or some other obvious reason behind their motivation for asking that I’m not particularly fond of, as soon as I pick up on this, I just say something like, “I just use this (while tapping my wheelchair lightly) for the great parking!”

[mike-huddleston]

Hey Angela –
I would echo Alyssa’s response about consulting with your doctor if you have any concerns. I would not rely on social media or various news outlets for safety or efficacy. Personally, I received both initial vaccines and two subsequent boosters, all Pfizer, with no issues. I will be getting the new variant booster soon. I haven’t consulted with my doctor for any of these, but understand some may want to and encourage anyone to do so to help determine if the vaccine/booster is right for you.

[mike-huddleston]

Sorry you’re experiencing this level of pain with your injections, Lindsay. My injections site changed from my lumbar area to c-spine in September of 2021. The reasons were different, but I have not experienced pain in either location. And yes, I consider myself fortunate with this.

That said, one of the current studies I believe that is still underway (it may be over, so maybe search clinicaltrial.gov or check with your neurologist) is the possibility of having a port surgically implanted. This is beneficial as it would eliminate the pain you’re experiencing, at least in theory. Another SMA patient I know was also experiencing such debilitating pain with her lumbar injections that she switched from Spinraza to Evrysdi. That could be another conversation with your neurologist if that’s something you’d want to consider.

In the meantime, I hope your next injection – and the sedation – goes well.

[mike-huddleston]

Ahhhh, the pool. I am so very fortunate to have aqua therapy weekly on Fridays. It’s an indoor pool at a community center, which has two pools; one standard pool for swimming and another one for therapy. I started doing this in late 2016 and made very decent progress until a bit of a setback during COVID, when the therapy options were closed down for almost 2 years. In fairness, I don’t use this as a cool down opportunity, but focus on the therapeutic benefits of working with a therapists who has a lot of experience with SMA patients. I was very fortunate to find her and the pool within about 10 miles of our house.

I do use the pool’s transfer chair, so I transfer with a slide board to that chair and that is a hydraulic chair that lowers me into the water. When the session is over, it’s a simple reversed procedure.

Changing is a challenge for me as well. I do not change at the pool. I wear shorts to the pool that I stay in, and change from my shirt to a water shirt. I also wear yoga socks in the pool for traction. My therapists also adds about 8 pounds of ankle weights per leg, as I’m kind of “floaty” without them. This means my legs would constantly float up to the surface without them. I’m my own personal flotation device!!

After the session, I place an absorbent medical chuck/pad in my wheelchair before transferring back into it. I bring a towel and dry off, my therapists helps get my socks and shoes back on, and I take off the water shirt and put back on my dry one. This time of year, it’s pretty comfortable. In the winter? not so much. But IU bring a small blanket and lay that over my lap and put a jacket and knit hat on and I’m okay until I get back in my van. I wouldn’t want to be outside like this for an extended period of time, but as is, it’s a minute or two which is very tolerable.

I’m working on building back up to where I was pre-COVID, but the freedom felt in the water is amazing. There is truly nothing quite like it. I encourage everyone to pursue this as a possibility if you have the opportunity to do so – and can do so safely. And as a byproduct, it’s very refreshing!

By the way, access to the therapy pool is also available without a therapist. They have hours called “Wellspring” where you can pay a reasonable fee once or buy 15 passes at a time. If you need someone to assist you, they can do so as well.

[mike-huddleston]

Hey Alyssa and everyone. I’ve been out of town, so really late to the party on this one. Like Robin and Matt, I’m a bit on the older side, having turned 60 earlier this year. I understand the concerns people have about this, but to me, I try not to judge the reasoning behind these comments. Sure, some people are saying it to make themselves feel better, or because they’re simply to socially awkward or uncomfortable to know that regular conversation ice-breakers are perfectly fine if they want to engage with me. So, for me, the stranger who says it because I’m out and about, living my life, is typically greeted with a brief nod and maybe a smile. If it leads to further conversation – or not – I’m perfectly okay with that.

I’m not here to be someone’s inspiration or hero, but in some ways our culture seems to want to elevate anyone who isn’t overtly a jerk into such status. So, some of it may be a byproduct of the times and what some perceive or believe is “the right thing to say”. But why invest the energy trying to assess or gauge their reasoning or motivation? And if you do, what are you going to do with this knowledge? Confront them? Why bother? It would just make us look petty. If in some way me living my life is an inspiration to someone, I’m thankful for that. If they’re just saying it to feel good, so be it. I can’t control other people’s thoughts, nor would I want to. I can only control me (hopefully), my emotions, and my reactions.

I’m much better being (actually or not) an inspiration to someone than having them ask whoever I’m with how I’m doing, when I’m right there. The latter is an opportunity to politely or kindly educate them, the other one really doesn’t matter to me.

However, the true heartfelt comments touch me and are genuinely appreciated – and remembered.

[mike-huddleston]

Hey Alyssa!

First of all, I’m glad to hear you went to the concert!

To answer your question, I think when anxiety kicks in, for me, I try to do mindfulness meditation. A lot of this is focusing on your breathing and trying to calm your mind. Of course, we need to avoid unnecessary risks, but that’s the issue. COVID made a lot of people extremely worried and aware, as in many cases it should have, but even though the pandemic “emergency” as defined is over, there are still precautions those with serious health conditions still need to take. So, try to be mindful of the actual risks you’re exposing yourself to if you follow appropriate precautions given your health concerns. Even with serious health concerns, there are treatments available that can help.

Then you have to weigh the risks vs. the benefits of the experience. The joy you had of going to the Taylor Swift concert is something you can measure, just as much as you assess the risks you took by going. Think back on the joy and happiness and use that as a guide in the risk/reward decision going forward. Just like you don’t want to take unnecessary risks, you also don’t want to miss out on things that bring you true joy. Consider both and I think it will help make the that is best for you – and also reduce some of the anxiety because you won’t be focusing on only the risks.

I think I may have referenced this in another thread here, but as a Type 3 who lost the ability to walk in 2015, as I was getting weaker and having much more difficulty walking, the risk vs. reward decision was based more on concerns, actual or perceived due to anxiety, on the potential for falling and getting hurt or embarrassed. I often made the choice to avoid some of these and honestly regret most of those decisions because I missed out on many wonderful experiences.

[mike-huddleston]

Hey DeAnn.  Interesting topic/question.  So, bear in mind that I’m a bit older (60) than you and some others here, so take my response with a grain of salt.  Well, all of my responses.

I have felt awkward before and tried to hide my challenges, not wanting to be a burden at times to others.  I wish I hadn’t done that.  So, I was diagnosed Type 3 at the age of 16, knew there were problems before then with two older diagnosed siblings.  Maintained the ability to walk at least in some capacity until the age of 52 in 2015.  When I was ambulatory, one of the many ways I hid my challenges was to withdraw from things that I knew would present challenges or difficulties, and in some cases, risks that would be presented.  I missed out on many experiences by doing this.

As I’ve gotten older, I embrace the opportunity to do things my power chair provides and if a situation requires assistance, I don’t hesitate to ask.  And that may include complete strangers.  My experiences show that most people are willing to help if asked.  My response is broader in nature, but this applies to just about any situation.  Obviously you want to maintain a sense of privacy and autonomy, but don’t do that at the expense of causing yourself difficulties or missing out.

So much of the unfortunate politicalization of “woke” and DEI completely misses the mark.  Having empathy and understanding the plight of others and that their experiences are different than mine is actually a good thing.  DEI, and I ran the employee resource group for associates with disabilities for the entire company of over 40k associates that I recently retired from, is about working toward being able to be your entire self and about dealing with aggressions and micro-aggressions, bias and unconscious biases.  Sure, that was for work, but it allowed me to open my eyes to so many more examples and life experiences beyond the boundaries of work.

Being vulnerable, and that in at least some part is what you’re talking about, allows others to increase their awareness and empathy.  No, not everyone, because some people simply aren’t wired that way.  And that’s okay.

 

[mike-huddleston]

As both DeAnn and Anna said, OT/PT can be boring. Finding activities that are of interest and will keep your son engaged and participating will be important.  A lot of it will depend on your son and how he feels about this.  A properly developed and followed home exercise program should reap many benefits, again, as long as your son is interested in them.  Concentrated PT by someone who understands SMA or neuromuscular conditions could be huge and significant.  You don’t elaborate on your son’s condition here, but if in clinic therapy doesn’t get it for him, aqua therapy is absolutely wonderful. There are so many things we patients can do in water that we are unable to do in either actuality or safely on land.  Perhaps this option is available?

I met Jennifer from Wave Therapies at a recent CureSMA Summit of Strength event in Baltimore at the end of March.  The PT I work with is amazing and Jennifer was impressed with our aqua therapy routine.  She is out of Seattle (I believe), but may be able to provide a local contact or resources.  Or again, so might your local MD clinic.  That’s how I found my current PT back in 2016.

Wave Therapies – Aquatic Physical Therapy Serving the Puget Sound

Best wishes to your son.  Please let us know how this progresses.

[mike-huddleston]

Sorry, I failed to mention that, as a potential short term solution, you should be eligible for coverage under COBRA for up to 18 months if there are issues or delays while trying to get your more permanent insurance in place.  Pretty sure the option to offer that is required by law.

[mike-huddleston]

Hey Alyssa!

Been a while, but I have a couple of thoughts.  Some of this may depend on your father’s age.  I retired in December and am not eligible age-wise for Medicare.  So, I obtained what is called retiree insurance which is through the same health insurer as other active employees, but I have to pay the full premiums, rather than just the portion not covered by my employer.  I can keep this as long as I want until the age of 65.  I’m 60, but could qualify for Medicare now, but am currently not pursuing this.

I could have opted for what’s called COBRA, but that is only for 18 months.  The premiums would have been pretty close to what I’m paying now, but I didn’t want to be forced to make a decision in that 18 month period.

That was all background.  My wife has been on my insurance since the beginning.  She is a few years older than me and already qualifies for Medicare.  So, before I retired, she went on basic (Part A), which she had to do within 3 months of turning 65.  Recently, we added Part B for her coverage for doctor’s visits, etc.  We still are navigating the muddy waters of prescription coverage and supplemental insurance vs. Medicare Advantage.

So, it may be worth a conversation with the HR Benefits department of your father’s company from which he is retiring.  They may – may – be able to provide some guidance as to your options.  If you can qualify for Medicare, that may be the most cost effective option, but you should have several options to consider.

The medicare.gov website is also fairly decent and may be worth looking into.  Sadly, none of this is clearly laid out, and from my experience, that is not by accident. No one seems to know – or if they do, is not willing to share.  It can be both daunting and frustrating, but the earlier you can start on this and determining your options, the better it will hopefully be.

I hope this goes well and gets resolved to your liking as quickly as possible.

[mike-huddleston]

Hey Chris –

I’ve been on Spinraza since May of 2018, having been in the group of the first five adult patients in my state to receive treatment.  I recently turned 60, so am toward the other end of the spectrum age wise than your son.  I am no longer ambulatory as of 2015, but do PT twice a week, once in clinic and once in the pool.  I also work with an adaptive sports trainer weekly.  Each of these is approximately an hour.  I also started exercising before I was diagnosed way back in 1979 and maintained that commitment.  That said, since treatment, I’ve ramped it up to 2 – 3 hours a day with my home exercise program (HEP).

I might suggest working with either your son’s PT or neurologist, or both, to create an HEP for your son.  It doesn’t need to be as aggressive as mine, but perhaps augment the things done in therapy or focus on things too time consuming to address in your son’s shorter sessions.

As to am I seeing any gains?  The short answer is yes, but that is qualified.  Please keep in mind that all of the initial trials were done with patients with shorter experience periods of SMA than mine, so your son’s actual mileage may vary.  I have seen some areas of strength gains and even some muscle growth in my quads (VMO area), anterior tibs, and hip flexors.

Whether or not your son is ambulatory, load bearing is very important, as is cardiovascular exercise (maybe an exercise or recumbent bike/stepper).  Proper diet is also important for overall health, so if the MD clinic you go to provides access to a dietician, take advantage of this.  And finally, I also use a e-stim device, mostly on my thighs, to help stimulate muscle contractions.  Remember that most/all SMA patients suffer from loss of motor neurons.  Currently, and it would be nice if this changes, that once they die, they do not replenish.  So, talk with your son’s neurologist to get suggestions on trying to effectively keep or maintain these.

I know it’s a lot, but obviously this is a topic near and dear to me.  Feel free to message me directly if you’d like to talk about any of these suggestions.

[mike-huddleston]

Hey Tammy – I’ve been on Spinraza since mid 2018 and have not switched.  I would also imagine since Spinraza has been around longer, more folks would have started there and then moved to Evrysdi, but not sure about the switching back, etc.  Sorry, I realize not very helpful, but may be why getting some info is challenging.

That said, I have health insurance through work which requires at least an annual authorization.  It seems first steps would be to target a switch over time frame with the neurologist who will be handling the procedure and have them start the pre-authorization process.  Get that date firmed up and then also coordinate the date for stopping Evrysdi as I don’t believe you would have approval for both medications at the same time.  Although that may be a question to ask for any possible overlap.  Since Evrysdi is daily, it seems you would need to take it up to near when you would begin Spinraza injections, but again, that would be a question for your neurologist – someone would have to know the logistics around that.  For Spinraza, BioGen assigns a Family Access Manager, or FAM, who could potentially answer that question from a BioGen perspective.  Not sure if Evrysdi has someone similarly assigned or available to ask these type of questions?

Here is a link for some “getting started” info for Spinraza. If you haven’t looked at that yet, it might be worth a review.

Starting SPINRAZA® (nusinersen)

Whatever you decide, I hope it works well for you!

[mike-huddleston]

Yes, Tammy!  I’ve had that happen more times than I can recall.  I went for early voting in 2016 and the guy at the polling place came up to me and said, “You have to go to the front of the line.”  I said, “I’m good, thanks.”  He left and came back 2 – 3 minutes later: “I checked and you really have to go to the front of the line.”  Me: “I’m good, thanks.  In fact, I’m likely more comfortable than the folks in front of me standing on their feet.  But I tell you what, you go to every single person in front of me and ask if it’s okay if I can get in front of them and if all 100 some odd of them say okay, then I’ll do it.”  He looked at me and repeated, “You have to go the front of the line.”  I laughed and said, “I’m good.  Please stop.”  He did and a few minutes later his superior came up to me apparently to urge me along and I just held up my hand, said “no.”  That was that.  But, wow.  After that, the guy in front of me turned around and said, “Sir, please go in front of me” and we both started laughing.

[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]

I am not in the DEVOTE study. But I just know the 3 people I mentioned above who are. Also of interest, at the Baltimore Summit of Strength in March, Dr. Charlotte Sumner from Hopkins (she’s my neurologist although Dr. Thomas Crawford runs the Spinraza program out of there for the state – both are incredible!) mentioned that BioGen is evaluating something along the lines of a time release to see if they can make it a once a year injection. This is outside of the DEVOTE study and I’m not sure what stage they’re in for that, so not even sure if it’s actually a study – at least not yet as far as I know. If they can figure this out, it may help address the slump you mention. I am honestly really fortunate that I don’t experience that.

I just had my 19th injection last Thursday/6th one in the c-spine. Hope yours goes well tomorrow! 🙂

[mike-huddleston]

Not trying to hijack this, and apologies for not knowing, but do you happen to be involved in the DEVOTE study with the higher dose of Sprinraza? I know 3 people in that study, two of whom are Type 3s and the other a Type 2. Just a couple of weeks ago I asked them how they felt. The Type 3s said it was hard to tell so far, but I found it interesting that the Type 2 said, “I feel my swallowing has improved, as well as my lungs are stronger.” She did mention this wears off around the 3 month mark for her, which was similar timing of general increased fatigue when on the regular dose.

I know some folks have increased fatigue or weakness toward the end of the 4 month cycle between treatments.

[mike-huddleston]

Hey Alyssa – a couple of ideas:

1. Initially, just focus on your breath – in and out.

2. Don’t beat yourself up. Everyone’s mind wanders and that’s okay. When it does, show yourself some compassion rather than getting frustrated, and then just focus on your breath again.

3. There are some decent apps that may help. One is called (I believe) Soothing Pod, and it will take you through the meditation process, from beginner to someone a little more seasoned.

4. Repeat step 2! 😇

[mike-huddleston]

Love and appreciate this, Blake.  Thanks for sharing.

[mike-huddleston]

That actually wasn’t my job, but something I volunteered for and applied for.  I had to go through a selection process and was fortunate that they picked me.  I was actually an engineering manager in IT.

I definitely think more representation growing up would have helped.  This is why I’m such a strong advocate for trying to be an example for others.

Part of my prior reply was not included (I thought I edited the original response), but one of the things I mentioned was to not place yourself in harm’s way, but as long as you can safely participate and still not place yourself at risk, physically or emotionally, then try to do so.  Not everyone will be willing or able to help, but those who are both will provide you with a little insight into them while opening up more experiences and opportunities for you.

[mike-huddleston]

Hey Alyssa.  Pretty sure COBRA was mandated as part of a federal law, so should be pretty much the same guidelines as it pertains to availability, eligibility,  and duration of coverage (18 months).  There may be guidelines around the size of your father’s company, but if you have coverage through him, I’m pretty sure that COBRA must be offered.  It’s optional to insure through them, but if he’s offered health insurance as a retiree like I am (not 65 yet), he can obtain through his HR and it will be retiree coverage.  Every other person he has covered on his current policy cannot, at least as far as I’m aware, just be dropped.  They have to offer coverage either on his retiree plan or through a separate COBRA plan.

As an example, if his health insurance is through Blue Cross, when he retires, he would go on Retiree Blue Cross.   He would have the same coverage offered to him as to others who still work there, but he would have to pay the full premium, not the subsidized amount he does now.  everyone else on his policy would either go on that Retiree Blue Cross policy for whatever additional premium, or be offered their own policy through COBRA, meaning COBRA Blue Cross.  There are different eligibility rules that dictate if you can go on his retiree policy or COBRA.  Of note, he could also elect to go on COBRA, but that would only last a maximum for 18 months, and then after those 18 months are up, he would need to secure his own health insurance policy.  Retiree lasts until 65, COBRA is maxed at 18 moths.

Here’s a link to the department of labor’s site with related info:
Continuation of Health Coverage (COBRA) | U.S. Department of Labor (dol.gov)

He and everyone else on his current policy could also secure coverage through the healthcare.gov exchange, however that most certainly has different eligibility requirements by state.

My HR department was terrible in providing guidance, so I had to dig a LOT to find out some of this.  I hope it’s helpful to at least get you started.  But please let me know.  I found out way more than I can type on this and am willing to share what I found out.