Tag Archives: ALSRI

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TransFatty Lives – a film review

Last Saturday evening I watched TransFatty Lives and was stunned by the unique method of simultaneously telling two stories. The first story is his slow but inevitable descent into total quadriplegia following a diagnosis of ALS and the second is writing a time capsule letter to his son to explain his absence and inability to participate deeply in his son’s life. The film was scattered with amazing images showing POB’s delightful deliberate eccentricity and with scenes both hilarious and disturbing. Some scenes were personally disturbing as I remembered my own experience with that phase of decline. Others were colorful and outrageous in a way only Patrick could make them.

TransFatty Lives is a perfect film for seeing the effects of a fatal diagnosis on a young hedonistic man. As he faces each step of decline he becomes a little more introspective and gains more awareness of the value of the little moments that give life its value. How POB takes the viewer along reveals his genius – you don’t know you have learned something until the next scene begins.

Even more than “The Theory of Everything” or “You’re Not You”, “Transfatty Lives” is the most important film involving ALS. The faithful and honest treatment of both the horror and triumph which is ALS, and the amazingly creative style of POB, makes this a must-see for all PALS and CALS and their families. It should also be widely promoted for all people worldwide. Even for those for whom ALS is just a disease named for some baseball player, this is a wonderful film about human trial, triumph, survival, and love.

This film is amazing to experience. It is much more than a simple documentary. I easily rate this 5 stars, two thumbs up, one poop, etc. Rent or buy this film immediately and have a viewing party.

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Residentiality

Last night (at time of writing) I was treated to a personal guided tour of the Steve Saling ALS Residence in Chelsea, MA. My tour guide, via laptop webcam, was my friend Lisa Jones-Wyhlidko, the dynamo who does such excellent volunteer work for ALS Guardian Angels. She dialed me up using Google Hangout (up to 9 people in a group teleconference – a really wonderful free tool!) and said she was going to walk me around and show off the Residence.

I was amazed right off the line. The attention to detail giving the place the feel of a regular residential condominium was exquisite. Except for someone coming down the hall in a wheelchair you would never suspect this wasn’t a condo full of young professionals. The common area was the first hint of difference with tables built high enough to roll wheelchairs under. The professional kitchen made me drool. Tucked into the soft and comfortable construction were cleverly concealed safety features such as fire doors which seal off the kitchen in case of accident.

Next up was the first floor with the kosher New York style deli (complete with molded tin ceiling) and bakery. The bakery had a nice outdoor patio for use in the fair seasons. Around here I was introduced to some staff who were a little surprised to be talking to a head in a chat window at 3:30 in the morning. They were absolutely pleasant and friendly and further surprised I was on the West Coast. I love technology.

Next was the hair/nail salon and spa with jacuzzi style tub. You read that right – hair/nail salon with jacuzzi tub! PALS have a right to a hair-fluff and mani-pedi just like everybody else! The salon was pretty standard except perhaps for shampoo bowls being a little higher. The spa had vertical overhead track lifts and the tub tilted up to ease the PALS in, with contours for head and neck support.

This entire tour was done without break with a laptop using standard WiFi connection. The entire building is saturated with WiFi connection, even the outside patios and lawns (which have substructure below the sod to ensure a wheelchair doesn’t get stuck in a bog). Going up and down in elevators was seamless. This is so PALS in power chairs can call elevators and open doors for maximum independence. The PEAC system integrated into the network allows doors and other utilities to be operated by a PALS with an eyegaze system.

Simply put, this place is awesome! Readers who know me know that I despise the over-use of that word in contemporary vernacular, so you know I really mean it. Steve Saling had magnificent vision, and the Chelsea Jewish Foundation was bold and progressive in working with Steve to realize his vision in building the Steve Saling ALS Residence into the Leonard Florence Center for Living. I am proud to support the ALS Residence Initiative and hope to see at least one in every state in the country. Thank you Steve for having vision and the skill and determination to see it realized!