I didn’t know where to start. What worked for me was having someone who had already been through a life changing injury to help guide me and my family on what to do. For me it was the Thomas E. Smith Foundation. Tom met with my parents to advise them on where to start and what needs to be prioritized for my care. Try to find someone who has already lived with paralysis to help you out. Preferably a foundation with experiences in assisting those with SCI. There are also great resources on the web. Christopher Reeves Foundation is a good place to start.

• Priority One: Find a rehab center that would challenge me based on my athletic background and the work I put in for that. My parents had to call our insurance company to see what our options were.
• Priority Two: Start now on home renovations!  My friend Tom gave this advice because it takes a while to plan, implement and complete a home addition or modification. Go as large as you can afford because chairs, special beds, railings, rehab equipment, etc…all take up a great deal of space. 
• Priority Three: Given the publicity given to my injury was to have a friend act as a gatekeeper for all contacts so my parents could focus on me.
• Priority Four: See what legal matters need to be addressed. Trusts, wills, estate planning, etc…Tom Smith (mentioned him already) helped us find an attorney to assist with my trust and parents estate planning. 
• Priority Five: Get after it in rehab!!

Insurance plays a major role in where you go as our insurance would only cover facilities in New England. If an option, call your insurance provider to have someone assigned to your case to make it easier to keep track of everything with them. In rehab ask your social worker about your current health insurance vs state sponsored (in my case MASSHealth). We were able to use our private insurance but state insurance sometimes offer better coverage based on your needs.

• Day two in the ICU my parents started looking into rehabilitation centers. It came down to Miami Project, Shepard Center and Spaulding.
• Spaulding is an internationally renowned facility that is right in my backyard. We just wanted wherever would give me the best chance to walk again and after a visit to Spaulding (while I was in the ICU) my parents assured me that was the best place for me. 
• Being an athlete it was also important to me (per Tom Smith) to have a place that would physically push me to my limits. Spaulding assured my parents that they would and they did. My goal was 3 hours a day of some type of rehab while in Spaulding.
• We also underestimated the emotional healing effect visits from friends and family had on me. Being close to family and friends was huge because it often made a terrible day become great by having a nice visit.

• I was assigned a social worker, occupational and physical therapists. It was important to connect with them and I definitely did!
• Getting wokened every night for medications and making sure I didn't get any bed sores.
• Mon-Fri consisted of a morning routine, PT for 45 mins, OT for 45 mins, and PT for another 45 mins.  Some days an outdoor activity such as hand cycling or indoor pool work were done in place of a PT session or added on. 
• Plan on a lot of down time, which wasn't always bad. My parents brought in an Xbox and streaming device so we could have something to do during the down time. Books, games, posting to social media...just a few things I did to keep busy.

• Assistance with information on getting my  driver’s license back
• Someone to help us navigate and educate us on medical insurance, SSI and SSDI benefits
• Mental health counseling, musical therapy, caretaker support groups (virtually held outside of Spaulding). 
• Holiday celebrations (I spent Halloween there).
• Media manager. My case garnered a lot of local and national attention. So much so that one day my parents stepped out  to grab lunch and wore medical masks, glasses, and hats to avoid the media waiting outside for an update. Spaulding refused to release my name to anyone who asked unless we approved of it.
• Wheelchair fitting
• LocoMat and walking exoskeleton. They got me upright which was a big deal when you spends your days sitting or laying.
• Friendships. Our therapists because they were our social life for 2 months. We love them and to this day still keep in touch.  Amazing human beings that we will forever be grateful to!!!
• Accommodations. This is an option that is NOT available to all patient’s families. Spaulding has a handful of apartments for families located next to their facility. My parents lived in one for two months and then I joined them for another 2.5 months.
• Being on the water actually sometimes had a calming effect, and the boardwalk gave me a safe space from which to get some sunshine and fresh air.  

• Managing the multitude of appointments. My mom was phenomenal with switching from nurse to mom mode. She was my advocate for all appointments and getting them on the calendar. It may takes weeks to months to get an appointment for something you need asap. 
• Wheelchair. We did not meet a single person who left Spaulding with their permanent wheelchair. Patients go home with a lender and wait for their custom fitted wheelchair to be delivered. This may have been because of COVID but was a bit frustrating due to back discomfort from the loaner chair.
• Sundays are hard because there is no therapy or appointments. My family tried their best to make the day fun but there is only so much you can do when your stuck in bed or a chair. My stay was during the tail end of COVID so that may have played a role in the limited activities on Sunday. Thankfully I was in there during the football season.
• Where to get info on what we needed for our house. What kind of mattress, ramps, low toilet height to accommodate a shower chair, etc…There is A LOT to take into account when returning home.
• Everyones injury is different. I was told early to not take what doctors and the internet reads about my level of injury and my chances to walk again.  
• It’s an emotional roller coaster, for me and my family. Everyone handles things differently so for me I was comfortable navigating the range of emotions on my own.

• Two months of outpatient at Spaulding in Charlestown. This was the plan my social worker and therapists designed for me. Again, everyone is different. Some people remained in Spaulding much longer than me, others went from Spaulding directly home. 
• My first week in Spaulding my parents signed me up at a local neurological recovery center…Journey Forward. In MA this is not covered by insurance so if you choose this type of therapy be prepared for serious out of pocket costs, and if needed fundraising.
• Be prepared. The safety net of nurses, doctors and others at rehab are not there anymore. It was up to me, my parents and brother to care for me. It was a scary and emotionally difficult adjustment for all of us!!!

• Continued OT and PT (Journey Forward or insurance covered PT/OT). My insurance PT would have only allowed for one 45 minute session a week. I knew that wasn't going to cut it if I wanted a chance to walk again therefore I signed up early for Journey Forward.
• Where your prescriptions are going to be filled.  Is this an additional expense?
• Scheduled delivery of all your necessary medical supplies for home. Insurance will cover so much but if you can GET EXTRA!!
• What do you need for caretaking?  Some people need a PCA, some are ok on their own, some need family. My parents and brother answered the call and were there for everything I needed.
• Traveling. You may need a new car. Being a paraplegic and an athlete I was able to manually transfer from my wheelchair to our car seat. It’s not easy!!! Rehab will help you learn this skill and many others (they have a list of lifeskills that insurance needs you to master) dependent upon the level of injury and your loved ones physical abilities. Our current car wasn’t going to work therefore we needed a new car so my family brought vehicles from nearby car deals for me to try getting in and out of.  

Great to be home but tough leaving a hospital in a wheelchair when your used to walking out of hospitals. Independence is a big deal in the SCI world so returning to a house with plenty of room for me to navigate and having my own space was extremely helpful with my adjustment.

It's also hard accepting that being in a wheelchair is currently the way life is, not what I was accustomed to.  

• Tom to the rescue. Tom has worked with several other paralyzed individuals to determine what modifications worked for them. Dave to the rescue. Life long friend and one of my former hockey coaches who happens to be the most brilliant contractor around. Chris to the rescue. Brother of a friend whose job is building residential accommodations for wheelchair bound individuals. Shawn Gallany, yup another coach and friend, also helped with his contractor connections.  
• Garage was added to allow me to get in the house while avoiding rain and snow. Those two elements are difficult to navigate in a chair. 
• LARGE bathroom. Roll in shower to accommodate a shower chair. Low height toilet for shower chair to roll over. Closet with low shelves that I could reach.  
• Low thresholds in every doorway to make it easier to get a wheelchair over.
• Durable laminate floors that can take wheelchair wheel abuse.   
• Light switches on every wall when coming and leaving a room. If possible go with voice controls.  
• Private bedroom. There are times when I want my privacy.   
• Low pitch ramps going into the house.  
• Special mattress. For me it is a sleep number that provides firmness for when I want to transfer from chair to bed, and softness to avoid sores while sleeping.  
• Sliding doors to make going from room to room much easier. 

The best advice I can give with this is if you have the means to do so purchase additional and/or extra equipment and parts. It took at least a month after leaving rehab to get my chair. Your wheelchair will breakdown though therefore requiring replacement parts, that's where it gets difficult. Getting parts such as front caster took months. We decided to order a new wheelchair to have in case my current one was stolen or damaged. It took at least 6 months to get a new chair. I also ordered additional parts. Best I can say is get parts or duplicates of any essential adaptive equipment.