Special Needs of a Tech-Intensive Mito Patient
Here I share what it takes to keep me up and functioning and down and resting, too. These lists and notes are drawn from the care and expertise I've received from so many individuals and teams, in health care settings and beyond, that have made such a difference in the quality of my patienthood. I bring a cooperative spirit and collaborative impulse to what I am sharing here to illustratrate that all the pieces fit together. Without the RSI Smart Gloves and the ergonomic keyboards and the many sessions with physical therapists, there would be no list of the Top 30 Apps and Subscriptions that helped me live my best life and do my best work. Over in The Accessibility University, I will include specific sources I’ve discovered that contribute to my adventures in learning how use technology.
Please note that I mention and even recommend products and services below for information/educational purposes only. My site is sponsor-free and ad-free. I am a patient who happens to be a librarian and I wish to provide enough detail to be useful about what I put under the umbrella of special needs.
My medical conditions are listed on the Landing Page.
Meds: Rx and OTC for Mito Cocktail
- SpectrumNeeds Powder
- CoQ10 capsules
- L-Carnitine Rx
- Other Rx and supplements
Diabetes supplies
- Accu-Check Guide Meter
- Pen
- Test strips
- Lancet units
Physical and Occupational Therapy
- 50+ visits in 2020
- 50+ visits in 2021
Special Equipment
- Power wheel chair
- Hand and ankle weight sets (3)
- Rolling walkers (2)
- Cervical spine pillow
- Blood pressure monitor
- RSI Smart Gloves
- Wrist splints
- Various ice wraps for hands, wrists and ankles
- Neck support pillow
Nutritional Needs
- Premier Protein Shakes
Therapeutics
- DoTerra Deep Blue Rub [topical analgesic]
- Voltaren Gel Rx
Tech hardware & equipment
- Lap desks for work and home
- Stands for computer notebooks, tablets, and cell phone (see Notes below for mobile devices used)
- Ergonomic split keyboards for work and home
- Bluetooth headset for handsfree calls on the iPhone [and] to look cool during video conferencing
- Over-ear headphones for music and podcasts
- In-ear buds for meditation, exercise sessions and reading
Apps and Subscriptions
Here are the top 30 APPS and SUBSCRIPTIONS that helped me live my best life and do my best work in 2021:
- Any.do
- Audible
- Apple Fitness
- Apple Health
- Apple Home
- Apple Music
- Apple Podcasts
- Be Focused Pro
- Bear
- cloudLibrary
- Coursera
- Craft
- Dashlane
- Day One Premium
- Drafts Pro
- Feedbin
- Forward Movement
- GoodNotes
- Headspace
- Libby
- Lire
- MedbridgeGO
- Moleskine Actions
- Moleskine Timepage
- MyChart
- Overcast
- PDF Expert
- ScanSnap
- Screencasts Online
- Voice Dream Reader
Notes & Links
- MitoAction (mitochondrial diseases/disorders education, research and support) https://www.mitoaction.org
- United Mitochondrial Disease Foundation (education, research and support) https://www.umdf.org
- SpectrumNeeds https://www.neuroneeds.com/product/spectrum-needs/
- CoQ10 https://www.neuroneeds.com/what-is-qneeds/
- Accu-Check Guide Meter, syncs with iPhone https://www.accu-chek.com/meters/guide-meter
- Merits Health P326A Vision Sport Mid-Wheel Drive Electric Wheelchair
- Drive Nitro Euro-Style Four Wheel Rollator
- Matias Ergo Pro Keyboard
- Kinesis Freestyle2 Blue Keyboard with VIP3 tenting package
- DoTerra Deep Blue Rub https://www.doterra.com/US/en/p/deep-blue-rub
- IMAK RSI Smart Gloves
- BlueParrott Headset B350-XT
- Beats Studio Buds https://www.beatsbydre.com/earbuds/studio-buds?sku=MJ503
- I've included screenshots during actve use of a few of the APPS and SUBSCRIPTIONS in Susanna’s List of Actions for Coping With Physical Exhaustion
- Tech hardware at home in 2022 includes 3 iPads, an iPhone, an Apple Watch and a HomePod mini. I sure did love using a MacBook Pro at home for many years and another MacBook Pro with Dell monitor at work in 2016-2021. I used two iPads at work as well and an Apple TV set up with a large monitor for library display.
