mike-huddleston
Forum Replies Created
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I wish awareness months historically were not needed, but if you’re an able bodied, white, Christian, (most often) male, sometimes a reminder that the country and world has moved beyond every single thing being about you isn’t necessarily a bad thing. That said, like many things, these often seem to be “preaching to the choir” and not as helpful as we’d like. However, if they serve in some way as a reminder that people within a given community matter, then that’s a good thing. One of the reasons I enjoy volunteering within and mentoring for the disability community is to serve as an example that everyone is more than just their disability. It doesn’t define me; it’s part of who I am, but it’s not what I am. So often kids can’t see beyond their current situation and that they matter and that they can have a fulfilling life.
However, to answer your question, let me say that if awareness months help with this, to me, no harm no foul. But advocacy, for self and for others without voice – or a forum to express it – seems to be the most important area of work that needs to be done.
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Some of this is incremental improvements. Personally, I don’t view an ASL interpreter as “media representation”, but rather a necessary enhancement to the experience of those in attendance – or watching. And, unlike some, I don’t really think this is an “equal access” issue. They don’t need to do a split screen, but a PiP option would be a nice and easy thing to do. Technology is way past this capability – so use it. As far as in the stadium experience, I haven’t been able to confirm it online, but perhaps they had the ASL displayed on the jumbotrons, meaning anyone further away from the field could see this…games I’ve been to (never the Super Bowl) often display something on the in stadium broadcasts not easily seen in the entire stadium? Additionally, there were streaming options available that showed the entire ASL performance of each of the songs.
Was it perfect? No. Will it improve? Yes, thus my incremental improvement comment above. I mean, since the US Barriers Act and the ADA were implemented, access has improved – dramatically. Curb cutouts, ramps, dedicated public seating, public transportation access, accessible restrooms, online mechanisms to determine accessibility for those concerned (have you seen this option in Google maps??), and the list goes on for folks with non-mobility related issues. No, it’s not perfect, but this whole uproar is making perfect the enemy of good. Be constructive, advocate for yourself and for improvements when and where deficiencies are identified.
Some of this, and certainly not all of it, fake outrage is what gives DEI and being “woke”, which truly just means being aware and empathetic that others have a different life experience than your own (and not the lies and garbage being portrayed negatively in some political circles), a bad rep.
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FWIW, MDA Quest is seeking speakers within their local ambassador program (I’m one) to talk specifically about this very topic of finding and securing caregivers. I’d imagine since they’re seeking speakers now, they will have this as either a live discussion or podcast soon. Keep an eye out, but I will try to remember to respond here once I see something scheduled.
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Like Alyssa, I have a FAM for Spinraza. Not sure that it’s critical to have a person in this role, but I find she is a good resource for initial questions. Better to have and not need them, than to find out you don’t have one and no initial point of contact. I suppose I do have another question: what is the consent for? In other words, what happens if you don’t sign it?
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I agree wholeheartedly with what both Micaela and Alyssa said. Painting a picture of your experience is critical to educating them. They apparently are seeking this type of information; glossing over it so it doesn’t sound like you’re complaining may make it seem like less of an issue than it is. Micaela’s “here’s what I need, here’s what I get and this is the gap” is amazingly powerful. Folks have no idea what the experience is, so lay out the facts and see where it goes. It may also be worth asking what they’re planning to do with this information. In other words, is it actionable or lip service? Offer your willingness to participate in ongoing discussions. And finally, as far as feeling like you may not be comfortable speaking, this is what I told myself when nervous in preparation for presentations when I served as a BioGen Spinraza ambassador: This is my story – mine – no one knows it better than me. You’ll be fine!
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There are many people dealing with arthritis that don’t have SMA or other similar conditions, so would imagine they are separate. That said, without load bearing and a lot of muscle mass supporting the bones, there could be an increased chance of arthritis or other bone related issues. As an example, I have bone density related issues and take prescription Fosamax, which has actually improved my bone density per the last two annual DEXA scans. So, I guess my take is SMA doesn’t cause arthritis, but the lack of load bearing and muscle mass may allow those types of issues to be more likely? Sorry, don’t know if that makes any sense whatsoever!! 🤨
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Nice and great location. FYI, I volunteer at an accessible sailing facility near there, CRABSailing.org, on Bembe Beach Rd (Bay Ridge Rd to Edgewood to Bembe Beach Rd). They’re closed for the season, but it’s a wonderful organization and if anyone wants to get out on a sailboat on the Chesapeake Bay, they have 6 accessible 22′ sail boats (transfer via slide box or Hoyer lift) and a power catamaran with in-floor locking mechanisms for those who don’t want to transfer out of their chair. If you’re not local, stay at this Air BnB and come see me at CRAB starting next spring!
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I turned 60 earlier this year. As there are no guarantees for anyone on this planet, I think I’m mostly just grateful that I’ve had a rewarding life and a wonderful 36 year career that I retired from last year. And even more importantly, my wife and I celebrated our 40th anniversary just a little over a week ago! I know I’m 60, but I feel closer to about 25 – 30 mentally. And aside from the SMA, I feel amazingly good, health wise, so thankful for that as well.
My mindset has always been that getting older isn’t a problem as birthdays are only a problem when they stop coming around. Embrace getting older. Live and love the experience. Focus on the beauty of life, not the challenges presented.
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When I had a Quantum Q6 Edge, I had to replace the joystick several times. I had one die on me in the restroom at work. I was able to get it to stay in the slowest speed, but still drivable, like that for a few days by taping it in position. I also had an attendant joystick on the back for when it died completely another time. I was able to have someone pull that out of its holder and drive it from where I was resting it near my chair arm. I realize that may not be an option. I’ve had the wires fray completely on the current Permobil M3. After that was fixed, I found and bought another replacement wire online to have as a backup. If you tell the DME that you’re basically unable to move your chair, they should escalate that and resolve more quickly. I have found that they keep used parts and often have temporary replacements available until your new ones come in. This is usually not inventoried, and may come down to some of the technicians and what they have in their vans. And finally, I keep all of my parts when something is replaced and have actually MacGyvered a joystick. If your DME tells you they need to take the parts with them, that’s only true if it’s something being replaced under warranty.
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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!”
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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. -
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.
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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.
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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.
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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.
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Hey Lindsay –
So glad to hear the sedation worked for you. That said, perhaps the radiologist is now comfortable with more than just lumbar injections so you might be able to revisit the injection site, cervical vs. lumbar. If you didn’t experience pain when having the injections in your neck and if the sedation becomes problematic (ineffective or giving it to you), I’d encourage you to discuss with your neurologist and the radiologist the possibility of relocating your injections back to your neck.
Hope this works out for you!
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Sorry for the delayed response. So, my neuro at Hopkins suggested I schedule an appointment with an endocrinologist to discuss bone health. DEXA scans measure bone density, and mine was low. The endo’s recommendation was to take Fosamax, which can be an annual injection or a pill taken once per week. I chose the weekly pill option. One of the measures of bone density is called a T score or T count. Mine has improved on the medication. That means the bones are more dense, thus stronger, and less susceptible to breaks/fractures. I don’t feel any different taking it but appreciate the stronger denser bone structure. I’m not aware of any side effects, but am sure there are some.
Have a nice Thanksgiving, Alyssa!
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That’s wonderful! Glad you enjoyed the experience and that you have it listed!
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Honestly, it’s hit or miss with my DME (NuMotion). Typically, and especially more recently, when the chair is not working at all, they were pretty good about helping quickly to resolve it. The frayed controller wires on the Permobil was September 2022. I had my old chair, but that has unreliable batteries and the elevator seat no longer works. They came out to my house the next day and installed temporary wires until the ordered ones came in a few weeks later. I believe it’s hit or miss as it depends on what they have available. In my case, the tech happened to have a serviceable and exact replacement cable. Not sure how much you can count on something like that.
I would encourage you – and everyone – to not overstate the direness of your situation. If you can make due safely, don’t tell them it’s urgent as that will affect response time for everyone, including people who are genuinely in need of urgent attention. If you chair is DOA, tell them and let them know if you have a temporary replacement or need one. It also might be worth a call to your local MDA office to see if they have something temporary available in their lending closet. Doubtful for a power chair, but just another option.
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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! 🙂
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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.
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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! 😇
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Love and appreciate this, Blake. Thanks for sharing.
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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.