Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Why CaringBridge? Most of you already know that Bill was diagnosed with ALS/Lou Gehrig's/MND at the end of 2012. It has been quite an emotional roller coaster for our family. Many of you have asked "How is Bill doing?" and I have been wanting to create a CaringBridge site for awhile. This site was a blessing when my Dad was diagnosed with pancreatic cancer. We are so grateful to have received so much wonderful feedback from friends and family while he was still around and after. The flood of support that my Dad and our family received was breathtaking and is exactly what Trent and I STILL need.
Please see the most recent journal update. I'm leaving this piece up as a reminder to all where we have been over the past few years. Much had changed since with caregivers, moving Bill back and forth to Journeycare, nursing home, home, etc. It became a physical, emotional and mental battle and was even starting to become a serious legal battle because of what is/isn't offered by insurance, facilities, hospice, etc. Please education yourselves and others so that we may raise awareness and prevent this from happening to others.
*Bill’s condition: Bill is in his power chair about 99% of his waking ours (unless he is on the commode or bath chair), and it is getting more challenging for all of us as a family each day. We are all scared of what might happen and when but are doing our best to keep our heads high and plan for things while we are able. Bill tires very easily as his muscles are constantly moving. He needs assistance ALL of the time to do basic daily activities (feeding, bathing, dressing, etc.)- the things that we able-bodied people take for granted - and is pretty much paralyzed now.
Current accommodations: Bill has a power chair (the cost of a car) that we purchased. Quite a bit was covered by insurance but still lots was out-of-pocket. We have a 10 year loan on the accessible van (the cost of 2 cars) we purchased. Both the chair and van have been helpful in getting Bill in and out of places. The warmer weather has helped too. Luckily, we have the house as well. All of the accommodations/remodeling we have done have not been financed. Luckily, the ramps, accessible shower, open bedroom allow for Bill to still live at home.
Help: We despise having to ask for help, but this whole process has just become so stressful financially, emotionally, mentally and physically. We will be setting up an on-line fundraising page, and we will post the link on here once it is ready. We know that this site is only possible through donations, which we encourage here. We are also in need personally to cover, or even help subsidize, the cost(s) associated with this awful disease. Other ways you can help: food preparation, coming to visit/spending time with us, posting words of encouragement/inspiration on this site, etc. We also have caregivers every day of the week (amongst 3 people) approximately 9 hours per day. I am his caregiver the rest of the time, and cannot leave Bill alone any longer for any length of time.*
*outdated information
Education: If you would like to learn more about ALS, please go to MDA (Muscular Dystrophy Association) at www.mda.org (
http://www.mda.org), ALSA (ALS Association) at www.alsa.org (
http://www.alsa.org), or Les Turner Foundation at www.lesturnerals.org (
http://www.lesturnerals.org) (preferred).
A million times… THANK YOU!
Love always,
Denise, (Bill and Trent)
