Clinic, Wheels, Mods and more

The end of April we were back to Jefferson for a clinic visit.  Its a long visit with many specialist that focus on Brad’s current symptoms/needs and how to best address them.  They recommend continuing with the Radicava Infusions every month – they are an ongoing 10 days on and then two and half weeks off.  His respiratory is strong and the neurologist says to continue, so we will.  After our mostly successful travel experience renting a wheelchair, we had a discussion at clinic on steps to move towards a chair at home.  We have been researching different options – this is complex because the needs to be met now are different and changing in the future and ALS does not come with a roadmap, everyone progresses differently.  The expense associated demands lots of research – all chair options are expensive, think of a car.  At clinic they informed us that insurance only helps with coverage on one wheelchair…this is such important information to receive!  They measured Brad to fit him for a chair and were going to check their loaner closet to see if they had anything that would meet his needs.  Additionally they did cognition testing, a very small percentage of ALS patients can develop dementia – no concerns here, sharp as a tack!

A few weeks later a wheelchair was delivered from the Greater Philadelphia ALS Chapter’s loaner closet to our house.  Not only is it super fancy but Brad can maneuver it really well, of course he can!!  This is such a tremendous blessing in so many ways.  Not only the rest for his body and the mobility options it provides – but we are moving as a family unit again!!!  Brad and Henry ride to school often on bike and chair – guy time.  He walks the dogs with Liberty and Addison or just to get out for fresh air.   Brad and I have always enjoyed walking together, usually with our dogs – its so nice to be able to do this again.  Hard flat surfaces are easiest to ride on.  Grass or gravel, not so much.

So the chair is used outside of the house, he walks inside.  His strength is limited so when he’s outside he rides.  Balance is a concern too, its ok now but a little shift can be problematic.  Along with a chair you need ramping to get in/out of the house.  With assistance from the Greater Philadelphia ALS Chapter, they provided ramping for us in our garage to easily get in/out of the house and under cover from the weather elements.  Next up, bathroom modification for our master bathroom – we have met with a designer and builder.  We are investigating a platform lift to install so we can continue two story living and get to the master bathroom.  We have to figure out a van for transporting the chair and to travel as a family.  We had a school event and Brad rolled over while I drove the kids – thank goodness the weather was nice and we could do it this way but it is nerve wracking to be traveling separate even if it is only a mile.  It will be so nice to travel as a family in one vehicle again.  So many transitions and changes and planning for what we know right now.  We are doing this!

May 31st, our 15th wedding anniversary!  A big milestone we celebrated with a lobster dinner Brad had flown in from Maine.  Our wedding was in Maine so it was a treat to have some local food for the night, Brad is very thoughtful and I’m quite the cracker and butter dipper!!  This is a big anniversary, we’ll take it.  Brad had planned a trip to our wedding destination for our 15th anniversary…2 years ago, it was really 13 years but we could not have experienced the trip the same this year.  Yes, we still went and we went family style.  Thank you Lord for giving us that gift and laughter about it too, 2 years early.   And for the happy day of celebration this year as well as the reality of such a milestone, the beauty of celebrating with our kids – joyous times together are the best!

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