The following are updates written by Bridget Creaven, Patrick's mother December 21, 2020:
Some of this may be old news to you but I thought I would just give an overview on what is happening with Patrick. I started keeping a summary that I can just add to as changes occur.
Patrick moved back home temporarily in June because he was having difficulty walking up stairs and randomly falling. He was living in Oakland and working from home due to the pandemic. His apartment was on the third floor and the building had no working elevator. He was struggling just getting to his apartment. At that time, he was trying to get medical appointments and tests to find out what was wrong. In July, he was diagnosed with ALS (Lou Gehrig’s disease). This was a shocking diagnosis for us. It seemed to come out of the blue, no hereditary link or traumatic injury. Patrick has been diagnosed by four neurologists at four different sites and three of the neurologists are ALS specialist, all were confident in the ALS diagnosis.
During the summer Patrick could move from room to room on his own, walk out to the patio and sit, and pull himself up our stairs using his arms on the banisters. We consulted with an occupational therapist (OT) and started making minor modifications to the house. By mid-August he had more trouble getting up the stairs so we had a stair lift installed. At that time, he realized he could not move back to his apartment so he put in his notice and we packed up his belongings and cleaned out his apartment. DJ, David (Maria’s boyfriend) and David’s brother moved Pat’s furniture and belongings into our garage.
By September Patrick had difficulty walking from room to room and walking to our patio so he started using a walker regularly. All our bedrooms and full baths are on the 2nd floor so we struggled with what to do – add a bedroom and bath to the first floor or just buy a new house. We went back and forth finally settling on an addition. We are working with an architect and also spoke to a contractor (the same ones Kit used for her addition) but plans are not finalized and we need to go through permitting approval. By October, Patrick was using a wheelchair and sometimes a walker for a short distance of a few steps. Because the addition could take months, the contractor suggested modifications to one of our upstairs bathrooms and the OT was also consulted. The good news is that the upstairs bathroom remodel is completed and it looks like it might work as a short-term solution.
Patrick is still using a walker but only to transfer him from his wheelchair to the stair lift and bed. ALS takes different forms and for Patrick it started with his limbs, first his legs and now he is losing strength in his arms. He has no problem eating or breathing. He has good medical care through Kaiser and participates in an ALS clinic. He started a new infusion treatment in December that sometimes slows the progression of the disease. Don and I are providing these infusion treatments at home using a port in Pat’s upper chest. His disease progression is moving quickly according to his health providers. We have home health care workers coming to the home regularly. I know one other person whose husband had ALS and her advice was to just roll with it. It is not a situation where things will stabilize, it can’t be controlled.
The latest news is that Patrick applied to participate in a trial for a new ALS drug that might also slow the progression of the disease and he will hear back shorty on how that might work.
Don and I are doing our best as care givers. Don is great doing more of the heavy lifting and assisting with personal care. We want to make Patrick as comfortable as possible and he is our focus. Emily visits regularly and was a huge help in the packing up Pat’s stuff in his apartment and cleaning it up. We are hanging in there and we have learned to ask for help when we need it. I have gone on a couple of Zoom Support Group meeting calls. One of their suggestions was to send out an email status so I am not explaining the same information multiple times or forgetting who I told what to.