Over the last few weeks, Jennifer and I have made good progress in making improvements to our home to make daily activities easier for me. We have also added a couple of new mobility devices to assist me in getting around more safely and efficiently.
As you may recall from a previous post, we’ve initiated the process of ordering a customized power wheelchair for my everyday use. The wheelchair, for the most part, was approved by our insurance company with the exception of one key component, the seat elevation system. The seat elevation system allows me to elevate myself to assist in getting to a standing position, allows me to chat with people eye to eye, and to do day-to-day activities that require being at a higher position. While insurance did not cover this key component, we applied for (and received!) a grant from Team Gleason to pay for that portion of the wheelchair.
Team Gleason previously had provided a grant for me to begin the process of banking my voice should my ALS progression impact my ability to speak in the future. We are so grateful for the support they’ve provided, and most importantly for the speed of decision-making. In both cases, the timeline from application to review to notification was about a week. For ALS patients like me, this timeliness is crucial and a reflection of mission-alignment for a nonprofit whose purpose is to improve life for people living with ALS.
The full-size power wheelchair is expected to be delivered sometime in the next 6 to 8 weeks, but could take longer. In order for me to get around safely in the meantime, we recently purchased an EZ Lite Cruiser, a lightweight and portable electric wheelchair folds up so that it can fit in the trunk of our vehicle, and weights less than 50 pounds. It’s a very comfortable chair which has replaced my red scooter. I now rely on the EZ wheelchair to get to and from work, to spend time enjoying the sun while riding around ala Moana Beach Park, or going to dinner with Jennifer and family.
Jennifer also recently surprised me with a heavy-weight rollator that converts into a lightweight transport wheelchair. This will come in handy for doctors appointments and other trips when Jen won’t have help getting the electric wheelchair in and out of the car on her own. This multi-use device allows me to use it as a walker for short distances and a wheelchair others can push me in when I get tired.
A big lift
One of the most transformative investments, however, is a stand-assist or ‘lift’ chair delivered earlier this month. I have become dependent on Jen to safely get to a standing position from any of our furniture, but this chair enables me to get to a standing position on my own. It has also proven to be a crucial part of my sleep routine. While new medications have dramatically reduced the agonizing leg spasms that had been disrupting my sleep, on occasions where my legs are spastic, cramping, or restless and wake me from sleep, I’ve found that I can move from bed to this chair and comfortably fall (and stay) asleep for the rest of the night.
Additionally, while we’re still waiting for the bathroom renovation project to get started, we have purchased a gliding bench for the bathtub that allows me to sit safely outside of the bathtub and then glide into the bathtub with help from Jennifer. It is a very comfortable seat which allows me to enjoy a relaxing shower safely and securely. We also added a toilet riser seat with handlebars that allows me to “go” more comfortably and securely.
To assist in the very limited walking that I’m able to do using my walker, I was recently fitted with a new set of ankle orthotics that provide stability and prevent “drop foot” issues that are a primary cause of tripping and falling.
Currently, my progression seems to be more focused in my upper limbs causing weakness in both arms, particularly my left arm which is now almost of no use to me. I’m still able to use my right arm but require the help of Jennifer to do day-to-day functions like brushing my teeth, brushing my hair, and getting dressed every day. While my walking endurance has been impacted, my legs are still pretty strong according to my physical therapist who measures my strength at each of my physical therapy sessions. My biggest issue with my legs is the spasticity that comes with ALS, which creates the illusion of walking like Frankenstein.
As noted in my most recent blog post, will be traveling to Dallas for our final Healey ALS Platform Trial appointment this weekend. While my participation has come to an early end, I am still proud and honored to have participated in this particular trial, which I’m sure will and has helped science get one step closer to finding a cure for current and future patients with ALS.
Finally, we both want to take this opportunity to once again thank many of you who contributed to our GoFundMe campaign which helped with the significant expenses related to our frequent travel to Dallas, as well as many of the items listed above. Your contributions will also offset some of the cost of our upcoming bathroom renovations. We exceeded our goal by over $10,000, and Jennifer and I are extremely grateful for each contribution, for every note of support, and for all the aloha that has been shared with us to date.
The fight is not over, by far, and Jen and I will continue to look for opportunities to enter into additional trials or treatments to help slow down or stop my progression.
Stay tuned for more updates soon.