Our holiday energy hangover is subsiding. Our house is in full swing – Henry is playing travel basketball this year and LOVES it. Our weeks are filled with games and practices, the more the better as far as he’s concerned! He is also sleeping past 5am, related – I think so!! Liberty has us traveling …
December was crazy! Thank goodness for our friends and family!! I was a bit frozen and behind in “normal planning”. The Christmas tree stand broke, and turned into weeks of set up, take down and ultimately returning the fake tree and stand. I was so sore from shingles, with the help of the big boys …
November is always super hectic, filled with lots of birthday celebrations and Thanksgiving. Things start to amp up this time of year for us normally. This disease is so hard to plan for, we just don’t know what is to come and it can be very frustrating. One consistent symptom is fatigue. We all have …
ALS is a disease with no cause or cure. There is one medication available that Brad started immediately upon diagnosis to help slow the progression of the disease. This drug is 22 years old. The FDA released a new drug, available in the USA in August 2017. First step, get approval through health insurance and …
At our PENN Clinic visit in August, we learned about an ALS walk in Ocean City, New Jersey. After our wonderful family time there over the summer, this walk called to us. Brad’s Boardwalk Bunch was born and we set goals: 20 recruits to walk with us and to raise $2500 for the Greater Philadelphia …
Sharing the changes happening in our family can be hard. It was hard to hear this diagnosis from the doctors, in fact we had to go back again to both hear it. It was harder to come home from the doctors and share with our kids that the disease in dad’s arm has a name …
It was a summer filled with lots of transitions, new work schedules, kids going to camp plus sports schedules and a blood clot that knocked us sideways and prevented us from traveling too far. We are a group that likes to know what’s coming at us and so far we are not batting a thousand. …
We celebrated Father’s Day with Brad’s parents and his brother and sister in law’s – Brint and Nikki – family. During the celebration we decided to pull together a pick up baseball game at a local ball field. With coolers packed, we drove around the corner and filled the field with our families…not a competitive …
May 4, 2017 We arrived at PENN and met with the Nurse Practitioner and Neurologist. Various physical measurements were recorded including breathing capacity. OT/PT and Speech visited. Its a long day between waiting and talking with the different specialists and mentally processing. They suggest no more walking Howie, it can throw the balance off if …
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