Видео 28
Просмотров 466 518

Soul Care: Finding Beauty in an Uncertain World

4:03

Soul Care: Grit in Choosing Medical Interventions

4:24

Soul Care: Adjusting to Isolation for Caregivers

3:12

Extending Life with Noninvasive Ventilation

10:03

Sudden Loss of Speech? Here's Low-tech Nonverbal Communication Options

5:01

Adaptive Clothing for Quadriplegic

7:01

Soul Care: Seasons of ALS and Mental Shift after Severe Disability

The change of seasons in the Keweenaw makes Kristin think about the seasons she and her husband have been through with ALS and the mental shift she's had to make after Todd became severely disabled.
Based on Kristin's column in ALS News Today, November 3, 2022: As an ALS Caregiver, Activities and Downtime Require a Mental Shift
alsnewstoday.com/columns/as-als-caregiver-activities-downtime-require-mental-shift/

Видео

Soul Care: Finding Beauty in an Uncertain World

4:03

Soul Care: Finding Beauty in an Uncertain World

Просмотров 256Год назад

Kristin talks about finding beauty and laughter to deal with life in an uncertain world and caring for her terminally ill, disabled husband.

Soul Care: Grit in Choosing Medical Interventions

4:24

Soul Care: Grit in Choosing Medical Interventions

Просмотров 3452 года назад

Kristin talks about how the grit we have depends on our goals, and our goals inform the choices we make for medical interventions. Based on her column in ALS News Today, October 13, 2022: Having Grit Matters in Choosing Medical Interventions With ALS alsnewstoday.com/columns/having-grit-matters-choosing-medical-interventions-als/

Soul Care: Adjusting to Isolation for Caregivers

3:12

Soul Care: Adjusting to Isolation for Caregivers

Просмотров 4842 года назад

Kristin talks about the problem of isolation for caregivers of disabled spouses.

Extending Life with Noninvasive Ventilation

10:03

Extending Life with Noninvasive Ventilation

Просмотров 1,8 тыс.2 года назад

After struggling to breathe due to ALS, Todd broke down and agreed to get noninvasive ventilation support for his breathing. Kristin shares their experience with ResMed's Astral "smart BiPAP" machine that provides peak inspiratory pressure on demand. 0:00 Intro 0:16 Qualifying 2:24 Set Up by Respiratory Therapist 4:30 Condensation in Tube 5:24 Mask Options 7:18 Filters and Sound Dampening 8:01 ...

Sudden Loss of Speech? Here's Low-tech Nonverbal Communication Options

5:01

Sudden Loss of Speech? Here's Low-tech Nonverbal Communication Options

Просмотров 8252 года назад

Kristin shares idea for low-tech nonverbal communication for a quadriplegic husband after an incident in which Todd stopped breathing and he couldn't communicate what was wrong. 0:36 Intro 1:10 Close Eyes for Yes 1:45 Quick/Flash Cards 2:28 Blink Code Alphabet 3:32 Laser Pointer Communication Downloadable files available @ NevaStory.com Laser pointer on Amazon: www.amazon.com/Presentation-Class...

7:01

Adaptive Clothing for Quadriplegic

Просмотров 6 тыс.3 года назад

Kristin explains the clothing used to dress her husband, Todd, who has quadriplegia due to ALS. 0:00 Intro 0:25 Buck & Buck Pants 0:59 Custom Split-side Pants 1:54 Tearaway / Breakaway Athletic Pants 3:12 Dry Fit Oversized Shorts 3:58 Oversized Cotton Shirts 4:12 Custom Split-back Dress Shirt 4:54 Jackets 6:16 Oversized Heelless Shoes 6:43 Outro Buck & Buck: www.buckandbuck.com/ Tear-away pants...

How I Customized My Ride | Wheelchair Options and Accessories

13:05

How I Customized My Ride | Wheelchair Options and Accessories

Просмотров 11 тыс.3 года назад

Todd and Kristin explain options and accessories for Todd's power wheelchair to make him more comfortable. 0:00 Cold Open 0:13 Intro 0:48 Joystick Options 2:03 Head Array 4:22 Attendant Control 5:03 Cushioned Armrests and Covers 6:24 Other Pads and Foam 7:25 Elbow Blocks 8:10 Cloth Backrest Cover 9:25 ROHO Air Seat Cushion 10:45 Elevate Function 11:34 Cup Holder 12:06 Tray Front versus Mid-driv...

What I'd Tell My Past Self after ALS Diagnosis

9:05

What I'd Tell My Past Self after ALS Diagnosis

Просмотров 2,7 тыс.3 года назад

I (Kristin) asked Todd what he would tell his past self after being diagnosed with ALS. He responded with three things, and I have my three. 0:00 Cold Open 0:12 Intro 0:40 Get Your Affairs in Order 1:51 Leave Words and Make Memories 4:12 Keep Engaging and Find Purpose 6:37 Accept Help and Rally Support 7:17 Don't Let Kids Lose 2 Parents 8:48 Outro 9 years with ALS, video about purpose: ruclips....

Why I Chose a Front- Vs Mid-Drive Wheelchair

12:47

Why I Chose a Front- Vs Mid-Drive Wheelchair

Просмотров 36 тыс.3 года назад

We explain the advantages and disadvantages of front-drive and mid-drive wheelchairs, with a cameo appearance by Comet, the dog. 0:00 Cold Open 0:12 Intro 1:50 Axis of Rotation 3:15 Considerations (Terrain vs tight spaces) 5:46 Informal Poll 8:12 Getting Squirrelly 9:37 Hallway Turn Test 12:00 Outro Links: Rear- versus side-entry vans: ruclips.net/video/AsiD_rX5iXw/видео.html Permobil USA Wheel...

How I Help Toilet My Quadriplegic Husband #2

4:26

How I Help Toilet My Quadriplegic Husband #2

Просмотров 8 тыс.3 года назад

ALS has progressed my husband's quadriplegia significantly in the three years since we made the last toileting video. He can no longer bear any weight, so we use a sling to transfer him onto the toilet. I show how we do that, and give an update on what we've learned about using urinals in bed. Timestamps: 0:00 Cold Open 0:10 Intro 0:26 Voyager Lift and Overhead Track 0:56 Transferring in sling ...

How I Eat and Drink Independently As a Quadriplegic

5:51

How I Eat and Drink Independently As a Quadriplegic

Просмотров 3,9 тыс.3 года назад

Kristin and I give tips and tricks for (somewhat) independent eating and drinking for me as a quadriplegic with ALS. 00:00 Cold Open 00:14 Intro 00:27 Good Grips 00:46 Eating at Counter-Height Table 03:14 Drinking 03:58 Fleximug 05:42 Outro Links: Lifetime Height Adjustable Craft Camping and Utility Folding Table, 4 ft, 4'/48 x 24, White Granite: www.amazon.com/Lifetime-4428-Adjustable-Folding-...

4:27

How I Trim My Nails As a Quadriplegic

Просмотров 1,2 тыс.3 года назад

We explain two ways to trim my nails without making me nervous. I need to keep my nails trimmed short to keep me from being scratched when I'm repositioned, but traditional clippers are difficult for my caregivers to use. 0:00 Intro 0:12 Orange Stick 1:04 Plyer-type Clippers 2:41 Nail Drill Kit 4:15 Outro Links: Camila Solingen CS13 Large Heavy Duty Toe Nail Clippers www.amazon.com/gp/product/B...

My Experience Getting a Feeding Tube, and Care (but Not Feeding)

10:28

My Experience Getting a Feeding Tube, and Care (but Not Feeding)

Просмотров 5 тыс.4 года назад

My lung function has been deteriorating due to ALS, so I had a feeding tube inserted. I discuss why I made the decision to get the PEG tube, even though I don't need it for nutrition yet. I talk about the procedure, recovery, and usefulness (apart from feeding). And my wife, Kristin, talks about how to care for it and useful tips. Timestamps: 0:00 Intro 0:14 Decision 0:52 Procedure 3:28 Recover...

Transferring Quadriplegic into Adjustable Bed Controlled by Smart Speaker

7:14

Transferring Quadriplegic into Adjustable Bed Controlled by Smart Speaker

Просмотров 8 тыс.4 года назад

Todd's caregivers and I use an overhead lift to transfer him into bed - an adjustable bed controlled with a smart speaker, so he can change his bed position with the use of his voice. My daughter demonstrates the use of the Alexa-compatible bed. Ergomotion Adjustable Base: www.ergomotion.com/products/adjustable-bases/ Beautyrest Black Setup Guide for an Amazon or Google Smart Speaker: www.ergom...