On Saturday, November 10th, Joshua and his cousin, Aldofo, went to Plaza Hildago where Aldofo had heard that an organization called PUSH was giving out brand-new wheelchairs, walkers, and other medical equipment for free in front of the church to those in need. They brought a letter from my doctor explaining the disease I had and why I needed a wheelchair. They were given a ticket and told to return later in the day to see if I qualified to receive a wheelchair. Luckily, I was one of the fortunate winners.
On Saturday, I also had a great, but painful physical therapy treatment. My therapist, Oscar, identified the areas on my legs and feet where I need the most help (and that are causing the most pain) and has been focusing on those areas in my treatments. I am unable to flex my feet at this time because the nerves that control that part of my legs haven’t woken up yet and rebuilt the connections to my brain when I tell them to move. Because of that, my calf muscles tighten up every few hours since they aren’t being used, which is very painful. Oscar showed my family how to help stretch my calves by pointing and flexing and moving my feet left to right. It also helps to separately massage my calves, shins, and the area on the top of my feet where the nerves collect. Joshua and my parents now help me do this several times a day to help lessen the pain.
Oscar is an incredible physical therapist and I’m lucky to have found him. He has treated several other patients with this disease and is determined that I will be walking within 2 to 3 months instead of the typical 6 months or more. I work with him every day for an hour and over these past two weeks, I have made several strides.
When I left the hospital, I could only move my feet left to right and point them slightly, but not flex them. I also had weak movement in my lower legs, arms, upper body, and hands. The rest of my body was numb – upper thighs, hips, stomach, back, hands, feet, and face (no movement other than being able to talk funny). Also, I couldn’t feel my bladder and my intestines moved very slowly, which is why I am still on a catheter and on a strict diet until those nerves wake up.
Since I’ve been home from the hospital, Oscar has helped me regain feeling and movement in my knees, thighs, hamstrings, hips, and butt. My feet move left to right with more distance, I can point my toes more and slightly flex them, too. I am working on lifting my legs still and can lift my right knee and lower leg about a ½ inch or so from the bed. My left leg and knee can lift about an inch and extensions in both legs improve every day. I have regained some strength in my thighs again and exercise them by having someone bend my knee up and hold my foot while I slowly move my knee left to right. Oscar comes up with new exercises every day and my strength increases.
Since I am on the computer every day, I exercise my fingers from all of the typing I do, but I still have to stretch them and bend each joint separately throughout the day because they get stiff. My arms, chest, and shoulder muscles didn’t lose much strength so they are recovering more rapidly than the rest of my body.
My face muscles are the slowest to recover. I have daily ultrasound treatments to help stimulate the circulation and nerves (it feels like a facial). Oscar also massages my face and does exercises to help wake up the nerves. I can slightly move my eyebrows, but nothing else has started moving yet.
I also have a night nurse now, Filiberto, who is very experienced – I feel like he is a knowledgeable as my doctor. He has treated patients with GBS, as well, so I get a second dose of physical therapy every evening before I go to bed. Filiberto doesn’t speak a lot of English, but he’s teaching me some Spanish and I am, in return, trying to teach him some English. In the meantime, he understands my broken Spanish and gestures well enough to know what I need help with. He is also determined to help me start walking again as soon as possible.
My doctor, Dr. Peña, makes house calls about every other day to check on me. The catheter that I had in my neck for the plasmapheresis treatments was taken out about a week after I was home. Dr. Peña was worried about a possible infection, so it was removed to avoid that. He thinks that I am improving well.
On another note, Xavier has started attending Diactics daycare, which he absolutely loves. Someone was kind enough to donate several months of care to us so that we would have someone to watch him for part of the day while I focus on physical therapy and Joshua can work. My parents also get a break from a very active 1 year old. Xavier loves being around other kids, so the daycare is perfect for him to get some social activity.
Everyone can agree that my recovery is going well, but we are just taking it day by day. Three months seems so far away and I cannot wait to get out of this bed, but am trying to work hard with my therapy and be patient. I am in a lot of pain every day as more nerves wake up and I also experience muscle pain from the therapy. I’m trying my best to stay positive knowing that the next day there will be less pain and I will soon be pain free and back to my normal self, but some days are harder than others. This disease has turned my whole world upside down in every way possible!
I am very grateful for Joshua and my parents who are taking care of me, Xavier, and everything else in my life that I am unable to do at the moment. More times than not, they are exhausted and in bed by 8 or 9 PM. They also get a little stir crazy (like me) and yearn to get out of the house even if it’s just to run an errand. I don’t blame them one bit.
Anyhow, I will try to keep posting information about the progress I make or just to relay some thoughts or experiences.
Thank you to those who have made donations. It’s helping us to pay for the nurses’ care, physical therapy, medicine, and hospital bills. I hope that everyone had a nice Thanksgiving!


