Equipment update and mahalo to my brother Tuly

A tremendous MAHALO (thank you) to everyone who contributed to our latest GoFundMe stretch goal to help pay for our ceiling lift. This update provides as update on our progress with the ceiling lift, shares a video of a hoyer transfer, and gives a big shout out to my brother Tuly for his recent visit and support.

Structural scan

The contractor first had to conduct an structural scan of our ceiling determine where the track fasteners for the ceiling lift can be safely anchored into the living room ceiling, to avoid conduits and rebar.

That assessment has concluded and the equipment has now been ordered hopefully to arrive within the next week or two. Once the equipment is here it should be a one or two day installation. The blue tape shows the approximate location the track will follow when it’s installed. It will be used to lift me up from my recliner and into whichever chair we place in front of it: shower chair, power wheelchair, or commode chair.

Hoyer transfers

This equipment will make transfers much safer for both me and Jen. Back in May, we shared videos of me transferring between my power wheelchair and recliner—since then it’s simply become too difficult to transfer in that manner (i.e., with me standing to assist). Instead, we rely on the hoyer lift, or someone physically lifting and moving me. Many transfers using the hoyer lift are either unsafe or not possible for one person to manage without any assistance.

New shower chair

The new Nuprodx shower chair has been a tremendous addition to our equipment (see the second half of our last post for photos). With help, Jennifer is able to use our Hoyer lift to place me in the shower chair, roll me into the bathroom, shave me, brush my teeth, remove my external catheter, and then simply roll me into the shower, ‘hopping’ the shower curb, using a gliding rail system. The shower chair reclines and provides greater comfort for me during shower time. The chair and rail system was funded by a grant from the Team Gleason.

Since our last post, we were able to secure an alternate solid cushion that can be quickly swapped out with the original toilet seat cushion which is rather uncomfortable to sit on for long periods. Jen was able to remove the screws from the cushion and replace them with quick pins to enable quick-and-easy switching.

There are so many remarkable equipment options these days but the cost is astronomical. The sticker price for the new seat (sized to my body and chair), two sets of quick pins, plus shipping to Hawaii was nearly $500.

ALS progression

Regarding my progression, I’ve had an increased weakness right arm and right hand, which makes it more difficult for me to drive my power wheelchair. We are working with my local wheelchair rep to find a solution for me to regain independent control of my wheelchair. In the meantime, I now have a co-pilot to/from work.

A special visit

My younger brother, Tuly, once again made the long trek to Honolulu to give Jennifer a break from caregiving. As always, Tuly was not only helpful but kept me laughing throughout his visit.

He helped with transfers, managed my night time routine, responded to my middle-of-the-night needs, assisted with physical therapy, filled-in as co-pilot on office days, helped with stretches throughout the day, played dentist, fed me and even helped with a couple of showers.

I love my brother and I’m so grateful that he takes a time to travel all the way from Puerto Rico to Hawaii.

On the horizon

We are working with a high school classmate who lives in Hawaii, and is a well-known salsa band leader, who has offered to host a fundraising concert. We are still working out the details, but it will be a great opportunity for friends in Hawaii to enjoy a night of salsa dancing while raising funds to support my journey. More details coming soon.

As always, Jennifer and I are grateful for your continued support, love, and aloha. Check out the help page to learn how you can continue to help.