Help Darek live with ALS
WARNING SHOT?
When Bill Gates pulled cord on his contraption and took the ALS Ice Bucket Challenge in summer of 2014 Darek Milewski had no idea what is lurking behind those three letters. He just turned 51 living fulfilled life, working at Microsoft, still recovering from clipping of an unruptured aneurysm. Darek had felt quite lucky, spared, given second chance. Life was good. We we were looking forward to finally unpacking boxes and start living "normal" life in our new home on rural Vashon Island.
HOW IT STARTED
One week after returning to work from medical leave, Darek, my husband and Ruta's dad lost his job as part of Nokia layoffs and started to slur words.
BAD OR GOOD NEWS?
After twelve nightmarish months of medical appointments, MRIs, uncertainty, hopes and... more testing, balancing his new consulting job at iSec Partners (now NCCGroup), and surviving Ruta's teenager transformation. Finally, on a rainy day in December Darek got his diagnosis - Primary Lateral Sclerosis (PLS). Darek’s neurologist had told him that Darek should feel lucky because it is not ALS and one can live with PLS more than 2-5 years, as is typical with ALS. Then he had introduced an asterisk and fine print: "However, PLS may turn into ALS over time".
FINE PRINT
Just recently fine print has turned into a screaming headline. The real tragedy of ALS that it makes crystal clear what is happening and will happen, while Darek is painfully aware of that. Darek calls it molecular schadenfreude. Every day Ruta and Ania see that he can do less and less, gets more spastic and his muscles disappear. First, they fibrillate. Only after they stop out of breath, they commit seppuku one by one. We all can see that and feel absolutely helpless. Although human body has lots of individual muscles, it is definitely finite.
24/7/365
While being wheelchair-bound, speechless, and soon unable to type even with one finger, Darek tries to maintain normal life. I am his sole caregiver. But even heroes reach their limits and get tired from 24/7 shifts. “It breaks my heart to see you putting life on hold and be so exhausted.” Darek has told me. “We need another caregiver to help you.”
SILVER LINING
“Surprisingly (to myself) I feel quite fortunate and happy. Mainly for being with Ania, seeing Ruta become a caring and beautiful woman, and having handful of friends who care about us and has not abandoned us. I feel also grateful to Social Security, Medicare, NCC Group (for offering employees Long Term Disability Insurance), my fantastic palliative team, and to you for your support and generosity.” Darek had told his friends.
DAREK’S BUCKET LIST
When asked about his bucket list, Darek kept it practical:
1. get a used wheelchair van to get out of the house beyond wheelchair range, “walk” accessible trails in Puget Sound area, go to Ruta’s high school graduation and send her off to college (she just got accepted to Western Washington University!)
2. hire part-time personal caregiver to offload Ania
Various studies point out long-term in-home caregiving ($66,915 per year , not adjusted for inflation) as being the highest expense families of ALS patients have to cover. Unfortunately this vital service is NOT covered by Medicare .
It costs us, especially Darek a lot to ask for help. He, a former risk consultant feels like a failure not to prepare financially for such a “long tail event” (his words). He feels that he failed us. Of course, he is wrong on that.
Whether you decide to contribute or not, please do share our story with your friends. We also encourage you to read, contribute and share other ALS stories on this platform. There are real people behind them at various stages of this unforgiving disease and desperate families who have run out of options.
Will you help?
Thank you in advance!
Ania and Ruta Milewski