Take Alittle Trip, Take Alittle Trip with ALS




If you’re anything like me, summer came quick, fast and in a hurry. Summer means trips, weekend getaways, camping and my personal favorite; beach vacations. I’ve always enjoyed traveling and experiencing new things. Typically, traveling is hectic and stressful until you get to your destination. The planning. The packing. The traveling. The unpacking. It all can seem daunting, even to the most experienced traveler.


As a 90’s kid, there wasn’t a greater illustration of traveling mishaps than Home Alone. Home Alone is when a bratty 8-year-old Kevin McCallister (Macaulay Culkin) acts out the night before a family trip to Paris, his mother (Catherine O'Hara) makes him sleep in the attic. After the McCallisters mistakenly leave for the airport without Kevin, he awakens to an empty house and assumes his wish to have no family has come true. But his excitement sours when he realizes that two con men (Joe Pesci, Daniel Stern) plan to rob the McCallister residence, and that he alone must protect the family home.


The pandemonium that comes with trying to plan and pack for a large family, can spiral out of control quickly. Anyone with children, can attest to this as being 100% factual. The main issue is whatever you pack, they unpack like little mystery ninjas. This is the gospel at my house, as they are my offspring after all. Haha. I know, please say a prayer for my wife, Erika.


As I’m sure this is very relatable, this is the part of the story where our paths differ. How different can my travel experience be than yours? Well, let me explain.


Let’s say that you’re going on an overnight trip and back home by noon the following day. You can probably get by with a small overnight bag. An extra pair of clothes, toiletries and a cellphone charger. Within 10-15 minutes, you're packed and out the door. Let the fun ensue. Upon arriving, you realize that you forgot your toothbrush and charger. No… Not my phone charger.


Why didn’t I forget underwear?


I can “free ball” it tomorrow or flip my underwear inside out. But I can’t go without my phone.


Again, very relatable. But, imagine instead of forgetting your phone charger; you forgot the charger to your ventilator. Now the severity of the situation has drastically become a life or death fight for survival . When you have ALS, you have to pack like your life depends on it. Because it literally does depend on it. My life could easily depend on whether we have power, tubing, suction, ambu bag, ect. With such a critical task of ensuring that we, I, have everything to survive, I made a list.


Reminder: These are ONLY the items that I require for 1 overnight stay.

  1. VOCSN Ventilator .
  2. Quantum Edge 3 Power Chair.
  3. Microsoft Surface Pro with eye gaze, speech, drive software.
  4. Tubing.
  5. Vent circuit. Suction.
  6. H.M.E. (Heat Moisture Exchange)
  7. In line suction catheter.
  8. Yonkers.
  9. Vent Suction canister.
  10. Extra vent batteries.
  11. Charges.
  12. Vent. Chair. Device. Phone.
  13. Contacts.
  14. Glasses.
  15. Sunglasses.
  16. Pillow.
  17. Gravity tube bags
  18. G tube catheter.
  19. Kates Farm formula. (3x day).
  20. Medication.
  21. Large syringe.
  22. Blanket.
  23. Long sleeve shirts.
  24. Pants.
  25. Shoes.
  26. Hat.
  27. Umbrella.
  28. GoPro.
  29. Batteries. Clamp. Mount. SD Cards.
  30. Transfer disk.
  31. External speaker.
  32. Power bank external battery.
  33. Bed foam wedges.
  34. Bed call bell.
  35. Extra pillows and blankets
  36. Urinal.
  37. Bed pan. 
  38. BACKPACK (GOES WITH US EVERY TIME WE LEAVE THE HOUSE & VAN)
  • Extra vent circuit.
  • H.M.E. (Heat Moisture Exchange)
  • Yonkers.
  • In line suction catheter.
  • Small syringe.
  • Large syringe.
  • G tube catheter.
  • Replacement trachea.
  • Inner cannula.
  • Saline syringes.
  • Gloves.
  • Scissors.
  • Tape.
  • Wipes.
  • Hand sanitizer.
  • Alcohol wipes.
  • Eye drops.
  • Chapstick.
  • Sunscreen.
  • Bug spray.
  • Alan Screw set.
  • Torque screw set.
  • ****Ambu bag.****
  • Gauze. (2x2 & 3x3 split)
  • Trach ties.
  • Gravity bags.


It’s truly astonishing how much it takes to keep me comfortable and safe. It seems to be overkill, but when your life depends on what you have available, you can’t be overly cautious. Even though we take the necessary precautions, things break or we figure out that our plan had holes in it It's trial and error. All while praying for the best.


Up until recently, the idea of an overnight trip was a distant dream. I physically couldn’t travel long distances because I needed suction/cough assist constantly. After my tracheostomy surgery, my body detected a foreign object in my throat. The body's self defense kicks in and sends secretions to that area, trying to push the object out. Trust me, it’s WORSE than it sounds. As time passes, the body adjusted and the amount of secretions decreased.


Thankfully, I found a piece of medical equipment called VOCSN. VOCSN stands for Ventilator Oxygen Cough Suction Nebulizer. This machine replaced 5 large, heavy cumbersome, separate machines with one compact unit. I couldn’t imagine traveling with 5 additional power hungry machines. The more compact, multi use products we have the better.


As you can tell, I don’t have the privilege to casually go on outings. It takes planning, packing, hauling, patience and understanding of what “could” happen.


The most important item that I need on every outing, is my wife, Erika. None of my outings would be possible without her. Erikas’ organization skills are outstanding. In addition, is her extensive medical knowledge and experience. Erika’s my “Ace up my sleeve”. She’s my security blanket. I know that I am in good hands with Erika nearby.


Being a caregiver is a selfless, demanding, and cruel lonely world. Sure, I have ALS and I am trapped in a useless body. But, people forget that significant others are experiencing far worse circumstances. They have to deal with loss, anger, exhaustion, worry, stress and pain. The daily demands of this life are devastating. In our instance, Erika isn’t just my caregiver. She’s my wife, mother to 2 boys under 4 years old. She works full time, runs our house and directs my care. My care is a job within itself. Appointments, insurance, prescriptions, medical supplies inventory and delivery, in home care workers and schedules.


Erika’s the real hero. I’m extremely fortunate to have her in my life and in charge of my care and family. This is a small glimpse into what it takes for me to travel. It’s not for the faint of heart. Regardless of what is required to get out and about, the juice is worth the squeeze.









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