Don’t Fail that Fall

by Aimee Sterk

Did you know that one out of three adults age 65 and older fall each year?

Disability.gov had such a great post about falls prevention, and safety, we wanted to share it here.

Falls are the number one cause of fractures, hospital admissions for trauma, loss of independence and injury or deaths for seniors. But you can take action! Learn how to prevent falls outdoors and at home or take a falls risk self-assessment. Visit the website of the Fall Prevention Center of Excellence to find information to keep you and your loved ones safe from falls. The site has resources for older adults and caregivers, including the three main strategies of fall prevention: balance training and physical activity, medical management and environmental or home modifications. Get answers to frequently asked questions about falls and aging adults from the National Institutes of Health’s SeniorHealth.gov. Learn about fall prevention programs and strategies from the National Falls Prevention Resource Center. For more information, read “6 Steps for Preventing Falls” for more information.

Panic Attack? There’s an app for that!

I had my first panic attack exactly 3 years ago, outside my doctor’s office. I’ve also had some PTSD flare ups recently so wanted to share this older blog post about my first panic attack as a reminder to myself and hopefully a help for others who have panic attacks.

In 2015, stress from recent health crises and triggers from childhood trauma culminated in a very scary experience–the panic attack in the parking lot of my doctor’s office. My friend was able to talk me through breathing /stopping hyperventilating and came to get me and take me home.

I later talked with my therapist about plans to prevent a future full-blown panic attack. She suggested noticing symptoms that came up as my anxiety increased. For me this is sweating, pounding heartbeat, and feeling trapped. Knowing this, she suggested using several interventions to prevent escalation and  breathing techniques to try to calm myself. This worked and helped for the next couple of days.

That is, until I was at an emergency preparedness conference and they were talking about critical incident stress management (CISM). I had recently run into a woman who I worked with when she/we were attacked and she was choked at our workplace. She could have been killed in the attack. After that incident, we had a critical incident debriefing. At the conference, the memories of that incident started to come flooding back, along with the feelings of guilt having recently run into my former colleague. Then, the conference presenter showed a video of workplace violence as an example—in a hospital setting (which was the setting of our attack). So, then I was done for. I hastily left the room and retreated to a quiet corner down a hallway.

I was breathing rapidly and tried to call a therapist friend immediately as my attempts at regulating my breathing were failing miserably. I got a voicemail. Not wanting to bother the friend that helped me last time, I decided I was going to try to go it alone until the therapist could call back.

the front page of the PTSD Coach App

I remembered that I had downloaded PTSD Coach, an app designed by the Veterans Administration, onto my iPhone and had been using it for anxiety and depression. The app has a tool for managing symptoms and one of the symptoms you can select is “Reminded of Trauma.” I selected that and rated my distress on a level from 1-10. I gave myself an 8 and the app suggested tools accordingly. It gave me the option of distracting and laughing/reading a comic book. I thought to myself ummm no, that isn’t going to work right now, so I gave that a thumbs down and asked for a new tool.

PTSD Coach then suggested Deep Breathing—putting on headphones and being led through a breathing exercise. Nice idea, but I left my headphones at home and I was at the end of a hallway where people could possibly hear me. New tool please!

Then we started to get somewhere—the app suggested slowly counting to 100. Yes, that helped me calm down some. Progress! After that, I asked for yet another tool, and it guided me through the RID Tool. R= relax. The app suggested breathing in and out slowly. As you breathe in think “let,” and as you breathe out think “go.” A 30 second timer started counting down.  You can then add 30 more seconds or move on. I took another 30 seconds.  The I=identify the trigger. The app suggested going over the last few minutes and hours and identifying what reminders of your trauma you encountered. I easily listed these in the space provided.  It then said once the triggers are identified, it is important to notice how it is just a reminder, and not the actual trauma happening again. At first I thought, “Well, duh, I know that,” but telling myself that did actually help. Then I filled in the box about how this experience was different from the actual trauma. In D, you decide what to do now, the app said you can try to decrease the trigger’s power by deciding to stick around and see that you can handle it and that your stress will actually go down the longer you stick it out. It also suggested if you are angry or in danger of harming yourself or others, you should take a time out and seek support. I decided to sit outside the meeting room for a little longer in peace and rejoin the conference at the next break. I did attend a few more sessions then found myself completely exhausted and decided to leave the conference early.

Meanwhile, I tried one more tool before going back to the conference. The app suggested a grounding exercise, “Walk slowly focusing your attention on what it feels like to take each step.” This was a great way to re-center and continue calming myself. I got outside for a walk and remembered that walking and being in nature always helps me. After my walk, the app asked me to again rate my distress level. I gave myself a 5. Much better than before.

***Note if you give yourself a 9 or 10 the app does suggest calling for help using people you have pre-loaded into the app and/or nationwide hotlines.

Have you tried PTSD Coach? Has it helped? Any other apps that help you?

Pregnancy AT to the Rescue!

By Aimee Sterk, LMSW, MATP Staff

I’m just about to hit 32 weeks pregnant. With my age (42), and gestational diabetes making for a big baby to carry around, I’m starting to get very tired very fast. I’m also much more awkward and find myself having to grab things to catch my balance. Luckily, I went through this a mere year ago with our first baby we got to hold, so I’m resurrecting this blog from that pregnancy.

From 2016:

my new tub set up with my shower bench installed and my handy handheld showerheadI told my husband the thought of showering exhausted me. And, smart man that he is, (and married to someone that works in AT), he immediately suggested a shower chair. It was a relief to even hear him offer. He measured our tub and took off for the nearest Meijer and came home with just what I asked for—one as wide as possible, without a back, with drainage holes and height-adjustable. Paired with our pre-existing handheld showerhead, I had the most relaxing and comfortable shower I have had in months! Yay for AT!

When I posted about the shower chair on a Facebook group I’m part of for pregnant women, so proud of my husband’s brilliant idea, several other women said they already had purchased shower chairs as well and loved them too. One even had a stylish teak one. Her budget is larger than mine the teak ones I found on Amazon were in the $100-$130 range while my plastic bench was $35 at Meijer and $25 on Amazon.

lotion applicator--small oval sponge on a stickAlso newer to me, is difficulty putting on my socks and administering medication for my toe. Again, AT to the rescue. A sock aid and long handled lotion applicator, and I am back in business. My favorite sock aid has fingers that are easy to squish together to load the sock and terry cloth on the outside to better grip the sock. It is called the Carex sock aid or sometimes the sock aide flexible deluxe and is about $9 on Amazon. sock aidThe lotion applicator I chose has replaceable sponge heads and is about $15 for two applicators and 6 replacement sponges.

Final on my wish list are shoes that can handle edema (without laces). This summer I found sandals to be the perfect option. When my feet were swollen, I just adjusted the Velcro straps larger for more comfort. Then when the swelling went down, I could make them smaller again. Now that winter is here, I’m not finding good options for expansion and contraction so I’m just borrowing my mom’s shoes that are bigger.

 

What AT do you find useful when fatigue is affecting you? Or edema? Or pregnancy?

Dating, Intimacy, Sex, Disability and AT

By Aimee Sterk, LMSW, MATP Team

This week has been a really weird conglomeration of anniversaries and news that are all muddling together in my head. Eleven years ago this week, I went on my first date with my husband. Two years ago this week, we put a deposit down for IVF that led to us having our son after battling infertility and loss for 9 years. In the news this week and this past year, are daily reports of the MSU doctor who sexually assaulted and abused hundreds of female athletes. His trial is ending and victims are making their statements. I was abused by my pediatrician as a child, the ultimate end result being PTSD that was triggered when we had our losses and I had more invasive treatments for the losses and infertility. A series of NPR stories has covered the epidemic of sexual abuse among people with disabilities, especially women with developmental disabilities. My son turned one and my daughter is due in March. I think about protecting them and teaching them about their bodies, safety, and love. Sexual abuse, domestic violence, dating, intimacy, sexual health, they are all on my mind—and I’m being bombarded with information and stories and reminders.

red and pink interlocking hearts

Like many people with disabilities, I started dating much later in life. Understanding and accepting my bi identity along with facing my thoughts about my body and my worth was necessary before I could consider dating. I waited until I was in my 30s. For many reasons, this turned out to be a good thing. While I spent many years feeling like I was unlovable, in the end I grew emotionally and built a life I loved and truly felt like finding a person to love would just be adding to something that was already pretty awesome. Ultimately, finding and marrying my husband and having children with him was the best thing that has ever happened to me. These experiences have been the very best in my life. I’ve also endured the very worst experiences of my life together with him. Dating, love, marriage—these are things that many people want to experience. With disabilities, there are extra complications and oppression.

Kristy Liddiard, in her work to face and rid ourselves of shame experienced by women with disabilities around the areas of sex and intimacy encourages us, “ …This can only happen by sharing our stories, lives and experiences. Stories can – if voiced and heard – be productive, useful, and valuable. Stories can define a place and people. They offer a sense of collective experience; a means to claim space, foster a positive identities and experiences, and demand social and sexual justice. Collectively, telling and sharing our stories is how we can build sexual cultures and communities as we want them; ones which fit all of our bodies, pleasures and desires; ones which empower rather than oppress. So, what’s your sexual story?”

Samantha Evans agrees, “From the issue of privacy in shared living or with carers, to conditions, medications and treatments making sex difficult, the discussion of sex and disability shouldn’t be shied away from.”

So, let’s take a look at just the tip of this iceberg of taboo around dating, sex, and disability. To start with, dating, there’s a great article about some myths of online dating with a disability in Psychology Today. Dating apps and websites provide a great option for people with disabilities to get into dating. I had my share of frustrations with online dating when I met my husband—I told him I was shutting down my profile and giving up and gave him my email address. That said, it did actually work out and this was very early in the online dating scene. When accessible, these platforms provide a way of meeting lots of people you wouldn’t run into in everyday life to cast a wider net. While there are sites to just connect with other people with disabilities, OKCupid, Tinder, and other mainstream sites are also open to people with disabilities. Choosing to disclose your disability is a big decision. I am quite open about my disabilities so like Emily Landau, I discussed my disabilities and other target identities early and often when online dating. Emily’s piece in the New York Times talks about authenticity and rejection and her decision to disclose when online dating. This is something to consider before creating a profile, or like her, it may be something that evolves.

Getting to know each other and intimacy are a big chunk of the dating framework and how long those last before moving into sexual intimacy is entirely personal. I’m not really coming up with wisdom, advice, or AT for building intimacy right now, so I’ll jump right into sex.

People with disabilities are often left out of sex ed classes. This is a huge disservice to us. Surprise! Many people with disabilities do have sex. We need to know how our bodies work and talk about healthy relationships. We also need information on safe sex, pregnancy prevention, and consent. More and more, this information is being shared, but for many of us that are long out of school, we need to seek out other resources. Here are a few:

All the articles I can find on AT for sexual intimacy focus on physical disabilities, and many commentaries are mostly assuming people are interested in heterosexual intimacy and sex. If you know of resources for AT and sexual intimacy for LGBTQIA people with disabilities, or mental health, sensory, or cognitive disabilities, please share them!

I can’t end this article without some resources on domestic violence and sexual assault. People with disabilities are far more often targets and victims of domestic violence and sexual assault. Key points here for me: it is never your fault and there is help available. We all must work together to end abuse of people with disabilities.

While my journey to find intimacy, love, and sex has had many detours and obstacles, ultimately loving and finding myself, seeing and appreciating my disabilities, and understanding and honoring myself as a sexual human being all have led me to my “fairytale” (for now at least) ending. Online dating was a key piece of AT that I used to address anxiety, meet a variety of people, and explore relationship building in a relatively safe environment. In addition, resources AT for sexual intimacy are also available. As  Valentines’ Day approaches, perhaps you are thinking about finding love and/or sexual partners. Hopefully these resources are helpful.

Advocacy Help for AT

By Aimee Sterk, LMSW, MATP Staff

A manual wheelchair reclined back showing the various angles of the tilt in space featureMy friend contacted me last week asking about the process for working with a nursing home to get his father, a resident in the home, a new wheelchair. It seems the nursing home suggested a very specialized wheelchair to meet his father’s needs, but when the home was told they had to provide the wheelchair out of their regular per diem rate, they were now suggesting a far cheaper, inferior option. That made me think it was time for another blog about advocating for AT needs.

There are a couple options to help you advocate for your needs for assistive technology (AT) or durable medical equipment (DME) in Michigan.

If you have a MI Health Link Plan (a combination of Medicare and Medicaid) the MI Health Link Ombudsman Program is here to help you access the DME you need if you have been denied coverage or are having trouble getting what you need. Call them directly—lawyers answer all the calls and are ready to help—at 888-746-6456. It is also possible to contact the Nursing Home Ombudsman program if the nursing facility is not providing needed AT at 866-485-9393 or 517-827-8040 for the State Long Term Care Ombudsman.

If you need help getting AT or DME through your school system, community mental health, the MiChoice Waiver, Medicare, Medicaid (or Medicaid funded nursing facility), or Michigan Rehabilitation Services (if employment related), contact Michigan Protection and Advocacy Services’ AT team at 800-288-5923. Michigan Protection and Advocacy Services receives direct federal funding to help people with disabilities of all ages access the AT they need.

The following is from Justice In Aging:

“Consumers with both Medicare and Medicaid face recurring problems getting approval for Durable Medical Equipment (DME), getting repairs, and finding reliable suppliers. DME includes many vital items, such as wheelchairs, walkers, hospital beds, home oxygen equipment, and even diabetes test strips used with a glucose monitor. ”

Some of the obstacles in getting access to DME include:

  • Conflicting DME approval processes for Medicare and Medicaid
  • DME access problems for people who have Medicaid first and then become eligible for Medicare
  • Getting coverage for repairs, particularly getting Medicare coverage for an item originally obtained through Medicaid
  • Differences between Medicare and Medicaid approved suppliers (many providers are approved for one program, but not the other)”

It is so important that people access the equipment they need to live in the setting of their choosing. Please, use the advocacy services to get the AT/DME you or someone you care about needs.

Have you contacted Michigan Protection and Advocacy Services for help with getting AT? Have you used an ombudsman program? What was your experience? What other advocacy tools have you used?

 

All I want for Christmas is some new AT (And I want to share this other article too)

By Aimee Sterk, LMSW, MATP Team Member

This year for Christmas, I am asking for the Fisher Wallace Stimulator device. I heard about it from my therapist. According the website, it uses electrical impulses to stimulate the brain to produce more serotonin and melatonin while reducing cortisol. It can be used for depression, anxiety, and insomnia. Fisher Wallace notes that the device is FDA cleared and has been used in many research studies.

The device is shaped like an elongated deck of cards and has a pyramid on the front with four lights in the pyramid indicating the strength of the neurostimulation and two cords attached to two sponge electrodes.
The Fisher Wallace Stimulator and a man using the device with the moistened sponge electrodes applied to his temples and held in place by a headband. Image from the Daily Beast: https://www.thedailybeast.com/fisher-wallace-stimulator-behind-the-do-it-yourself-shock-therapy

All of this sounds so good to me right now. I was on an SSRI while pregnant with my son and it really helped me combat depression and anxiety associated with pregnancy, losses, and PTSD while I was carrying him. I took half the lowest dose of the medication prescribed. Still, just as I am highly sensitive to meds, it seems my son is too, and he had withdrawal symptoms from my medication after he was born. This was devastating to me at a time that we were already in crisis as my son had to be in the NICU after delivery for another condition.

This pregnancy, I’m determined not to take an SSRI, but am again experiencing significant anxiety and depression. I had looked into non-pharmaceutical options when pregnant with my son (specifically TMS) but the cost was very high, sometimes I met the clinical criteria and sometimes I didn’t, and the commitment of daily, somewhat painful treatment, for 4-6 weeks, at a facility across town seemed overwhelming.

So, this year, I want to try the Fisher Wallace Stimulator as a non-invasive and less costly option than TMS (it still is expensive at $699). I do wonder if I can commit to using the Fisher Wallace twice a day for 20 minutes though–with a 1-year old and another baby on the way along with a full-time job, life is pretty busy right now.

I put the word out there to coworkers, friends and family to see if anyone I know has used the device. It turns out the husband of a friend is currently using it to treat his ADHD and has seen improvements as he tries to get off of his medication.

I also did some googling. In addition to the company’s website, if you are interested, you may want to check out the guest blog on Scientific American that details another user’s story and has links to some relative research. You may also want to check out the reviews on Drugs.com which tend toward neutral or negative with some people wondering about a placebo effect.

Currently, the device is out of reach financially for me, but possibly, when my Flexible Spending Account balance refills January 1st, I’ll get a prescription and consider giving this device a try (unless Santa delivers one first). In the meantime, I’m tracking my mood, taking my vitamin D, practicing mindful self-compassion and the lovingkindness meditation.

Have you tried the device? Did it make a difference in your life? What AT or techniques have you used for depression and anxiety when medication wasn’t an option?

And speaking of mental health, I have to share this amazingly good article that I learned about from Disability Network Southwest Michigan staff. It deeply speaks to me and has also touched colleagues and friends—a must read for people with mental illness and allies. It covers the dangers of being “High Functioning” (the authors words, ones I don’t use myself) mentally ill and touches on the damage of disability hierarchies and the intersectionality of mental health/disability and other identities.  Why I’m Done Being a Good Mentally Ill Person.

Weighed Down for Better Sleep

By Aimee Sterk, LMSW, MATP Staff

a cartoon person awake in bed with bloodshot eyes, sheep jumping over them and a cat snuggled in on their lap.I have a long history of battling insomnia. Lately, I have been having even more problems sleeping following a series of life traumas and increased anxiety. My therapist suggested trying a weighted blanket. I had previously heard of weighted blankets as calming options for people on the Autism Spectrum. I never knew they have a variety of other uses.

According to an article in Psychology Today,

“Weighted blankets are one of our most powerful tools for helping people who are anxious, upset, [and feeling out of sorts],” says Karen Moore (link is external), OTR/L, an occupational therapist in Franconia, N.H. These special blankets are filled with weighted pellets, which are sewn into compartments to keep them evenly distributed. Weighted blankets are also sometimes marketed for general use as an aid to sleep and relaxation.

“These blankets work by providing input to the deep pressure touch receptors throughout the body,” Moore says. “Deep pressure touch helps the body relax. Like a firm hug, weighted blankets help us feel secure, grounded, and safe.” Moore says this is the reason many people like to sleep under a comforter even in summer.

What a revelation!  After posting on Facebook, to friends inside and outside the disability community, looking for local resources to try a weighted blanket, several  friends chimed in that they too thought these blankets would be helpful for them. Some even said they were using one without realizing it—heavy comforters were their preference all year. One friend, who runs an Autism Center, connected me with some online options for buying weighted blankets and making your own. Another connected me with Christie DePrekel at Peaceful Product . These chance connections via social media have changed my life!

Christie of Peaceful Product is local and offered me several weights of blankets to try as I was hesitant to commit to the investment without knowing if the blankets would help me—though I had a feeling they would. I stopped by later the same day to pick up the sample blankets.

I tried a 15 pound and a 10 pound blanket and found I far preferred the heavier variety—and that my sleep and anxiety were much improved. I slept soundly (for me) the night before I had to give a speech to a nationwide audience—which normally would not be how I’d sleep before such a big event. I have found I also like sitting on the couch with the calming weight on me.

Christie mentioned that some members of her family have sensory processing disabilities, which is why she started making the blankets herself—looking to make quality items to meet their needs. Talking to her more about sensory processing, I realized that I too am sensitive to sound, pressure, smell, sight, and touch. Since I was a child I remember self-soothing by rolling my hands back and forth over a favorite blanket. I also achieve great peace when watching repetitive things like sprinklers or machines at work. I have met others friends who have the same type of soothing response. I also have created my  own type of squeeze machine having my partner hug me hard and/or lay on top of me while I’m on the floor, comforted by the intense pressure (until it’s hard to breathe). I wonder if it is all related?

Christie has seen weighted blankets help people with Autism, Aspergers, ADHD, Anxiety, PTSD, Insomnia, Sensory Processing Disorder, and Restless Leg Syndrome.

After deciding I definitely wanted my own weighted blanket, I met Christie at a fabric store and picked out some microplush fabric to cover my blanket (you should have seen me at the store with my eyes closed plunging my hands into the bolts of fabric to test their softness and soothingness). I then specified the size and weight I wanted, and one week later, my blanket was ready.

Weighted Blanket
I choose a colorful pattern of birds for one side of my giant weighted blanket and a lush blue for the other side.

I now sleep with it every night. The pressure is comforting on a primal level. I have trouble with night sweats, so the lightweight microplush has been helpful (the sample blankets were a thick fleece). If the weight didn’t affect the heat of the blanket at all, I would have gotten even heavier of a blanket.

The formula commonly used to choose the weight of the blanket is 10% of the body weight plus 1 or 2 pounds for children.  In older teens and adults this formula can be quite heavy so trying different weights like I did might be your best option. I found that in my arms a 10 pound blanket felt very very heavy.  But, once that weight was spread out over me, I thought it was way too light.

Have you tried a weighted blanket or have you been doing your own version of weighted blanket sleeping without even realizing that is what you were creating on your own?

Do you think something like this might work for you or someone you know?