I hope you and everyone in your circle of friends and loved ones are healthy, happy, and thriving. Gail and I are doing well, as is everyone in our extended family. My physical health continues to hold strong despite the 2017 Lou-Gehrig’s/ALS diagnosis and a few nagging MS issues. I am not so sure about the mental part anymore, given all that is going on in the world around us. Every day it seems to be getting harder for me to stay positive and focused on the beauty of the present moment. That is part of why I am reaching out to you. Yesterday I experienced something special I wanted to share with you that helped me reconnect to something positive, something inspirational.
For the last three years, I have been attending a monthly ALS support group meeting sponsored by the ALS Association for Oregon and SW Washington. I attend these meetings not because I am personally suffering from the ravages of ALS, but because they help me to stay grateful for my health and for all the amazing and wonderful people in my life, including you. They help me remember what it means to have true compassion for other human beings. They help me to see that no matter how bleak things seem, it is still possible to be positive, grateful, hopeful, loving and even productive.
In the three plus years I have been attending these meetings, I have seen many newly diagnosed people join the group. Some decline so rapidly they pass in just a matter of months. Most are on a slower decline and may have a year or two before their bodies fail completely. A few fortunate ones may even have several years or even a decade or more. And then there is me, physically fully capable and holding strong with no further measurable decline. The wellspring of my gratitude.
Recently, due to the Pandemic restrictions the meetings have changed to an online video format rather than in person. People with ALS are at extremely high risk of severe complications and death from COVID, so they have had to be even more diligent about physical quarantine. In some cases, even allowing the outside professional caretakers these folks rely on to function and survive each day to come into their home presents a life-threatening risk and has had to be stopped. In other cases, the caretakers themselves are unable to continue working due to their own personal or family health issues and concerns. Imagine being locked in a body that does not work, having no ability to speak except through a computer, and for some even no ability to breath except with the help of a machine. Imagine how important just having someone there with you would be. Someone to hold your hand, to talk to you, to share a laugh or a tear. Now imagine even that has been taken away.
I share this with you not to spread sadness, pity or depression. I share it with you to tell you that even with all this stacked against these beautiful souls, they somehow still find a way to be some of the happiest and most positive people I see around me. Even (or especially) in these troublesome and turbulent times, they still manage to keep a smile. They are still there for each other. There was no complaining, no whining, no self-pity. Just loving people trying to help each other find ways to live another moment, another day, another month or another year to its fullest.
In the meeting yesterday, one woman in our group who is in a power wheelchair has recently lost the use of her hands and can no longer even operate the joystick to control her chair. She is on a breathing machine as well. Her husband is retired and a recent survivor of cancer. They rely on a home healthcare worker who comes in to help every day, but that person has been unable to continue working due to the pandemic. Finding a replacement has been impossible so far. In our meeting, one of the other newly diagnosed patients, who herself is losing the ability to do anything strenuous with her arms and hands for more than a short while, volunteered to come help with in-home health care for the other family with more advanced ALS.
Several members of the group are struggling with needing to make physical modifications to their homes to accommodate their changing medical needs. Two of our group have recently had to move from walkers to power chairs. In that transition, suddenly they realize they cannot even get around in their own home because the doors are too narrow or the bathroom too small for these large power chairs to operate. This presents big challenges even in normal times. Medical costs have often already stripped many of these people of their savings. And even if they have the money, finding contractors willing to work during COVID and the materials needed to remodel has become exceedingly difficult.
In yesterday’s meeting, the group was working together sharing remodel contractor contacts, referrals, costs, and experiences for working with these challenges. Again, no complaining, no whining, no self-pity. I truly wish you could see it. I wish you could see and feel the strength, love and positivity we feel in this place, this time and with this group where one could easily expect to find only the opposite. It is beautiful and inspirational. That is why I keep going. That is why I am doing everything I can to help. And that is why I am reaching out to you. To ask for your help.
The local ALS Association is critical for all these folks. The ALSA uses the funds raised each year to stock a “closet” of equipment that patients can borrow. Included are walkers, power wheelchairs, speech-assist devices, breathing machines, lifting machines, wheelchair ramps and so much more. These are loaned out free of charge and then returned and re-used when someone has passed or has simply moved to a stage of the disease where a particular device is no longer needed. The ALSA does far more than just help with adaptive equipment though. They also help with medical needs, caregiver access, transportation needs and so much more. And of course, a portion of the money they raise goes toward funding research into finding a cure for ALS.
I am trying to help wherever I can. I have spent the last couple months building a dining table made from a reclaimed section of bowling lane (see attachment if interested). I am donating the table to the local chapter for their annual GALA Fundraiser auction and am hopeful it will bring somewhere north of $3K. In addition, Gail and I are going to participate in the RIDE TO DEFEAT ALS event again this year. This is one of the top fundraising tools the chapter has, so it is critical to find any way we can to make it successful. Unfortunately, the event is challenged by the COVID Pandemic regulations and cannot be held in its traditional format.
Instead, Gail and I will be riding 20 miles by ourselves on a route closer to our home rather than the big event normally held in Mt. Angel, OR each year. We raised a fantastic amount last year thanks to your generosity and the amazing generosity of so many of our other friends and loved ones. Our team (TEAM GRATITUDE) ended up being the top fundraising team despite having only two members. We raised $14,565! Imagine the amazing relief that money was able to provide to the community of people I have been telling you about.
Last year, I did not set out expecting to raise much. I hoped for perhaps $1,500 or $2K. We were blown away by the love – thank you again so much. Unfortunately, because of the changes this year has brought, the need for funds is far greater at the same time the ability to fundraise is almost as handicapped as the people needing the help.
So, here I come back to full circle. You are a beautiful, compassionate, generous, and caring person. There is a community of people just like you, who due to unfortunate circumstances totally outside their control have found themselves facing challenges that are almost unimaginable to most of us. They are working through these challenges as best they can, staying happy and positive and as active as possible. They are there for each other and even there for me, picking me up when my mind gets negative and I start to spiral down.
I know that just like the rest of us, you have no doubt been impacted by the recent world events. Your finances have likely taken a hit. You may have experienced health issues, business closures, loss of employment or other challenges. But you keep going knowing that it will all eventually pass, and you’ll be able to go back to “normal”. You know you will have time to rebuild and repair. I’m asking you now to see if you can find a way to dig deep and help these great people to be a little more comfortable as they courageously and lovingly live through the same challenges you’re facing in addition to the likely inevitable path of physical decline laid out before them.
Please Help. Please give whatever you can, even if it is just a few bucks. And if you really can’t help financially, please help by taking some of the love, courage and positivity these people share out into the world with you and share that, so that perhaps it will find a way back to them through the amazing interconnectedness we all share in this universe.
You can contribute by clicking here, http://webor.alsa.org/goto/RonParker and again thank you so much for helping! You really are making a difference in the lives of some wonderful people. Also, if you’d prefer to just mail a check and avoid the whole website process,
Please send it to;
ALS Association of Oregon and SW Washington
700 NE Multnomah St
Portland, OR 97232
And make sure to include Team Gratitude in the memo line so we can track progress towards our goal!
PS – as promised if you are interested in my latest woodworking project please take a look at the PDF attachment.
With my love, gratitude, compassion, and respect,