susana-m
Forum Replies Created
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Alyssa, Cuban coffee is basically espresso, very concentrated and nothing like normal coffee. Check on Instagram for a guy called Sucoo, his cafecito journey has become epic.
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Yeah, I tried the Roho seat cushion. Twice.
I’m glad that it’s worked out for a lot of people, but it didn’t work for me.
Appreciate the suggestion.
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Aww, I love that age.
My sister and I are close in age so we grew up getting creative in our play.
If they’re nervous about riding on the back of your chair, get a very long belt to secure them.
Once they start getting skateboards and skates, they hang on the back of my chair and I’d drag them around.
Eric is right, kids want us to see them. The best thing you can do is be there and support their adventures. Listen to them, ask them their opinion, ask him what they want to do.
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You’ve landed on the big question about preventative care: none of us were expected to live this long so what’s the point? That said, we ARE living this long. And we do want our quality of life to be as vibrant as possible.
This is where I start looking at the biggest bang for my buck. You guys know I am a big fan of acupuncture, eating a Hey healthy diet, meditation, and being in nature as much as possible.
Bone density test when I know my bone density sucks? There is very little we can do to improve bone density in significant ways. Pass.
Mole mapping? Are you fair skinned? Does skin cancer run in your family? Every few years we do superficial mapping of easily accessed skin. If your dog is smelling one spot a lot, get it checked immediately. A lot of dogs have found cancerous lesions before the doctors notice.
Now we come to the dreaded mammogram.
Here’s a practical workaround that is manageable in every hospital. Have your doctor write an order for a mammogram AND a breast ultrasound. The first time you go there might be a fuss about having to lift your arm and basically being in impossible positions. Once they go through that BS the only thing they have left is an ultrasound. And that, my friend, is easy. They asked me to come in every 6 months for the first year and a half, and after that it’ll be 1x a year.
Word to the wise: Skip the usual “how can I make this easier for everyone involved?” Go directly to, “no, I can’t do that, no, my arm won’t move that way, you’ll have to lift my arm because I can’t hold it.”
What strategies have you guys found?
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Hi Lance, welcome
“Gravity challenged?” I like it!
As we know: gravity works.
We’ve all had to adapt to diminished physical capacity, this is one of the first times I’ve seen a project that can really expand our access. Brilliant work!
I have the same question as Alyssa, can Gameface be used to navigate general computer controls?
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Ginseng is good but when I need a little more stamina for the day, I’ll take a green tea supplement in the morning. Just enough caffeine without leaving me jittery. I used to indulge in a little Cuban coffee on occasion, but that affected my stomach too much
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Deanne,
The research I did about the SPC didn’t put me at ease. Our plan is to minimize the amount of surgical intervention for as long as possible. My age means I’m not as resilient as I once was, recovering from procedures Is a more involved process. I’ll get there, but not yet.
Hospitals are using the PureWick routinely so I it’s only a matter of time for them to work with insurance. The other issue is that it wasn’t designed for a sitting position. When I’m laying down, I don’t have my body weight pressing onto the ‘banana’. It’s shaped like a little dugout canoe with an absorbent pad in the center. The edge of the container can cause small pressure sores, we’re proactive when I notice that it’s irritating my skin.
We got the one with the battery pack and that thing lasts 14 hours without charging. If it’s at the end of the day, we tend to hook it up. Did have to buy a new backpack big enough to take it with me. No more counting the hours or not going places because I wouldn’t be back in time.
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Very experienced with pausing bodily functions: fluid & food restrictions, using/not using medication, whatever you gotta do.
2 years ago had a hemorrhagic UTI, my urologist suggested the SPC. I’m not ready to have an indwelling catheter that has to be changed every 4-6 weeks causing bladder pain & infections.
We tried an experiment and so far it’s working. The downside is that company doesn’t deal with insurance. We’re trying to get reimbursed.
Got the PureWick, an external catheter designed for ladies to reduce the amount of walks to the bathroom at night. Difference is, I’m using it night & day. OMG, I’ve never been this hydrated in my life! Now I can drink whenever I need to. I’m not holding it, no one is stressed out racing home from work, I’m not waking anybody up at 2AM.
It’s been a game changer.
Anyone else tried this?
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All of this sounds very familiar. It’s not so much dealing with SMA, it’s how it never actually ends. There’s no vacation, there’s no time off for you or your caretakers. It’s exhausting.
Like Arty said, scheduling your life around your medical needs, defining your life by the medical parameters in existence? It can suck the joy out of life.
Alyssa asked about recharging. This is what works for me, your mileage may vary.
I go to nature. It sounds like a tiny thing, going outside, meditating by a tree, watching the bees, getting a little sunshine or moonlight.
It helps.
There are studies showing an improvement and blood pressure simply by looking at a tree for five minutes. Did you know that you can get a free pass to any state park? For you and a companion?
The other thing is being of service. Being useful to others in some way, shape or form.
The idea of work is tricky on a lot of levels, whether you’re dealing with physical exhaustion, or losing access to services and financial support if you make too much money (haha!). Whether it’s writing on a forum like this, or being a counselor or volunteering for phone work or drawing watercolors, I don’t care what it is, but you have to do something that isn’t defined by disability.
There’s some trial & error but figuring out your version of a timeout looks like pays off in the long run.
And, while you’re figuring it out, you can vent here.
We got you.
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I’m just gonna apologize up front, didn’t mean to be so long-winded, but apparently I had a lot to say.
First, don’t dismiss how you feel. The entire world is on fire, politicians are fanning the flames of war with fear and defensive anger, social services are being threatened daily and we’re still dealing with the side effects and isolation of Covid.
It’s a lot.
It’s a lot before we include navigating SMA.
Not having a job or purpose complicates an existing battle about self-worth.
When I’ve been depressed, I isolate myself. I stop connecting with those I love and with activities that I enjoy, in part because of the shame. One more thing that my family needs to deal with that I feel I have no control over.
Deann’s point about focusing on what you can do rather than what you can’t seems deceptively ineffective, but it makes a huge difference.
Going to echo what everyone else has said: you’re not alone.
We get it.
We’re living it right here alongside you.
We don’t have access to the same tools that other people have. We can’t go to the gym, work out and jump start those endorphins in our brains. Time to get creative. Look back and try to see what activities were nourishing and uplifting for you, it’s a little different for each person. Anything that allows you to be proactive will make a difference.
For me, it isn’t one thing, it’s many small things.
Nature; I try to go for a walk every day, vitamin D is good for depression, I meditate by the trees outside. I am mindful about what I eat, high levels of sugar & salt cause inflammation that causes pain. I get acupuncture on regular basis for pain management and a bunch of other medical issues. I also belong to Meetup, an online forum designed to get people off the computer, finding people who have similar interests. Instead of looking for a partner, it might be better to look for new friends
These strategies are all about maintenance, it’s a little different when you’re in crisis. At that point, I found therapy to be so important. During Covid I was in a depressive cycle, decided to get therapy and asked my PCP about medication, we settled on Lexapro. That gave me the bandwidth to deal with the issues that were giving me trouble in the first place.
I know this sounds like a lot, but I wanted to include many different options. Find one or two that make sense for you. I wish there was a silver bullet I really do, there isn’t. There’s a lot of trial and error in figuring out what strategies work for you in particular.
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I’m on the East Coast, it might as well be a different state than the West Coast. I don’t know about the access there, but here in Miami we have 2 big medical centers, thriving sports medicine community, the Miami Project, 2 trauma units and a growing geriatric population so access is a thing here.
I mean, there’s still problems with older buildings and people just being self involved people, but there’s more awareness. The amount of diversity that we have here makes it less unusual to ask about access.
But if anyone wants to check out Miami at some point, let me know I’ll give you all the tips. It’s pretty easy to rent a wheelchair accessible van could get a temporary pass for county transportation STS
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Alyssa, the joke at home is that I’m the Pea Princess (do you know that fairytale? The princess and the pea?) hypersensitive to a single hair on my arm that I can’t move or that 1/8 of an inch shift that gets me off blinding pain.
Relieved to know I’m not the only one
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Deann, have a question about your topper: do you spin it around or pancake flip it?
Like you, I prefer soft, and the constant pressure in the same points compresses those cushions, it even compresses the mattress. I spin it 180° every six months (or every year) which changes all the pressure points. Sometimes I’ll alternate and pancake flip it completely. Still get compression, but you extend the lifespan a bit more.
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Ah, the never ending search for the elusive comfortable zone. I know it well.
Get situated in your chair, find a comfortable position, then in the process of getting dressed your hips slide to one side. Just a little bit at a time. No one can see the difference except you, but you can feel it all the way up your back.
Adjust hips. Get on with what you were doing.
Maybe go outside, or maybe just leaning over a little bit to brush your teeth. Something shifts.
Adjust hips, or possibly shoulders this time.
The most frustrating task is finding a good position in bed. Move everything perfectly to an eighth of an inch and an hour later that exact position is beginning to complain.
The best solution I found is shifting the bed position often before I fall sleep and tilting the chair most the time that I’m in it. It’s mildly hysterical when doctors tell me that I should offload to avoid pressure sores. They have no practical suggestions for how to do this.
The Roho cushion was a bust for me. Like Deann, I prefer soft & sitting. An inflatable camp mattress might work for you because you can change the firmness.
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That’s one of our bucket list dreams: to have an accessible RV. It’s got to be easier to have that all set up than figuring out hotels and making do with what’s available. We found a few options in the Midwest, but not here in South Florida. Then again, the average person’s idea of handicap accessible is very different than ours.
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That sounds a little bit like the migraines I’ve had for years. Thankfully, the intensity has dropped as I start moving into menopause. It’s entirely possible that what you’re feeling has to do with hormone fluctuations and might have nothing to do with SMA. Start tracking when these episodes happen, it’s possible you’ll find a pattern. Even if it’s not menopause, you might find a connection with certain foods or specific stressful events.
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I’ve had wildly divergent suggestions from doctors but am more interested in real people living their lives.
For the professionals here:
What was the biggest difference with the SPC?
What was the reality vs expectation?
What did you wish you knew ahead of time?
Regrets?
Are infectious still an issue?
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Brianna, how did the SPC work out for you? Any advice for those of us considering the procedure? I’ve got conflicting opinions from different doctors but they don’t have to live with the consequences and second hand issues. Don’t want to find the costs outweigh the benefits after it’s done with no way to reverse course
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As if dealing with disability isn’t enough, organizing transportation can be a nightmare. Most people don’t have to think about accessible transportation: how far do they go? how many people are we picking up along the way?? what’s this going to cost in time & money???
I am grateful that in a city like Miami we do have door-to-door rideshare service, but I empathize with the obstacles when you’re far from your doctors.
That said, I do virtual appointments all the time now. The amount of info they’re going to get will be a little less but still relevant and valuable. If your neurologist is dead set against virtual, maybe ask what they think about sending a resident or an intern to be with you during the appointment at your house? Even a phlebotomist if you need to have labs done or a PT if that perspective is useful.
The world post Covid has become a little more flexible in terms of access. I’m surprised that your doctor hasn’t explored some of those options.
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Hi and congrats on getting Evrysdi! I didn’t realize there was an age limit, that’s nuts.
I know the anxiety well. Starting with possible side effects to the question of how much hope is reasonable, what can you expect to improve.
Historically, I’ve always had constipation but my body’s first defense is nausea. You never know with a new Rx so I planned on staying home with backup help. We left the transfer sling for my Hoyer lift under me as that would eliminate one time consuming step if there was a mad dash to the bathroom. It’s demoralizing when you don’t make it to the toilet in time.
One day, two days, nothing dramatic.
Had some nausea, tried taking the Rx at least 1/2 hour before food on an empty stomach and clear sailing from then. I’ve always been restless and prone to migraines, didn’t notice any significant changes there.
What I haven’t seen is anyone talking about the emotional process. The overwhelming anticipation and underwhelming reality DeAnne mentioned.
I was about 10-12 years old when I verbalized that I was not going to get better, that a “progressive neuromuscular disorder” only had one prognosis: slow decline without any real brakes. The sun rises in the east, the earth is round and SMA does not improve. Allowing yourself to hope for change means risking crushing disappointment. And then I peeled a tangerine, something I had not been able to do for 2 years. My doctors mentioned the volume of my voice had risen. These small changes mean the progression has paused and they’ve found ongoing improvements.
What’s been most impactful for me has been focusing on what I can control. I’m very deliberate with my food choices, I meditate daily, and am engaged in projects. Keep in mind, these are strategies that have worked for me but your mileage may vary.
The purpose of fear is to point out dangerous terrain, to keep you alive. You’re asking those who’ve gone before.
We get it.
We’ve lived it.
We got your back. -
I feel pretty fortunate to be in Miami where STS has been operating for over 30 years. Each county accepts bids from transportation companies who manage the day to day operations. It’s got its limitations like scheduling in advance, problematic (sometimes nonexistent) accountability, range, and the likelihood you’ll detour to pick up other passengers. Considering how many ways those fluid circumstances can go wrong, they’ve been fairly reliable. They’re not limited to healthcare transportation or to financial qualifications so school, work and socializing is accessible.
But you’re right,
it shouldn’t be this hard.
It shouldn’t be this expensive.
For a group that has historically lived on or close to the poverty level, the cost of living’s astronomical
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Ari, the genius in what you said is that you recognized how you put yourself in that position, you saw yourself as the patient with all that comes with it: the uncertainty, the powerlessness, the preconceptions, the fear, the actual crisis itself, all placed on the altar of medicine while looking for a solution.
It’s so easy to forget that what we bring to the table defines our experience, defines how we allow ourselves to experience everything. I’ll say one thing: people with SMA are sassy AF fighters. God help you if you get in our way whether you’re an insurance company, our own fear, or SMA itself.
Crack bone, suck marrow, be compassionate with yourself and decide who you are in the equation.
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We were in the clear, one week before my scheduled vaccination when my PCA gave me – us – Covid.
I was shocked at the utter lack of information or real medical guidance available at the time. Keep in mind this was over a year ago in February 2021. We monitored our oxygen levels, drank fluids and slept a lot. It was like being kidnapped and held hostage by the Covid Apocalypse.
We recovered but we’re more sensitive to heat, short of breath if we do too much, and Covid brain is a frustratingly real thing.
Was starting to think I was the only SMA who got sick. Notice any other long term symptoms?
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Eric,
You’re not an idiot.
You’re actually kind of brilliant.
That’s a great solution.
You’re only transferring twice a day, right? I decided to get a big backpack and put the basin for the PureWick in there. Also out-of-the-way.
I always wonder why companies don’t come to us and ask us to test out their equipment or even ask us what we want. They certainly ask their accountants.
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Deanne,
The research I did about the SPC didn’t put me at ease or even excited to try it. Our plan is to minimize the amount of surgical intervention as much as possible for as long as possible. I also have to consider that my age means I’m not as resilient as I once was, recovering from procedures Is a more involved process. I’ll get there, but not yet.
Hospitals are using the PureWick routinely so I it’s only a matter of time for them to work directly with insurance. The other issue is that it wasn’t designed for a sitting position. When I’m laying down, I don’t have my body weight pressing onto the ‘banana’. It’s shaped like a little dugout canoe with an absorbent pad in the center. The edge of the container can cause small pressure sores, we’re proactive when I notice that it’s irritating my skin.
We got the one with the battery pack and that thing lasts 14 hours without charging. If it’s at the end of the day, we tend to hook it up. Did have to buy a new backpack big enough to take it with me. No more counting the hours or not going places because I wouldn’t be back in time.