Neuropathy Showdown - Week 1

Physio/Occupational - Appointment 1: (June 1, 2016)

I was an absolute BUNDLE of NERVES (pun totally intended) as I pulled myself out of my moms car and shakily made my way inside the hospital for my first team assessment... Physio Therapy. I don't know what I was more nervous about, the testing of my legs or just being somewhere, completely on my own, for the first time in sixteen months. The few places I had been out since the Neuropathy hit me, I had always had a family member stuck right to my side at the ready to help catch me each time I stumbled, helping me to avoid a full-out fall. This time, I had no one to help me if I did take a fall but at least I was already in a hospital... just in case. My mom didn't want to just 'drop me off at the door' because she felt I should have an extra set of ears with all the information that was sure to come but I really felt I needed to start this part of my healing on my own. "What if you don't catch everything they're saying because you're still trying to process something else they've said?" she asked me. "The lady on the phone said they will have a program booklet for me as well as written weekly schedules for all of my therapies... it's a NEUROLOGY program, Mama, I don't think they can exactly send neurology patients home with just a see'ya next time. I'm going because something in my brain has stopped connecting with my legs, they know my brain's not working properly and they're trained to work knowing that fact," I said and then melted into giggles... I also have Innapropriate Giggle Syndrome but I kinda feel like that sickness helps me rather than hinders! "Oh, yeah, I guess you're probably right," my mom relented then. "And besides, parking around that hospital is beyond awful, it'll be so much easier for both of us if you just drop me off and pick me up afterward at the door." I know she was only wanting to help but I really worry that I have gotten to a point where the safe shelter of caring is starting to do a little more harm than good. So, in I wobbled...

Talking seems to be the hardest part of things for me lately because I have suddenly become so emotional about this whole unfortunate Peripheral Neuropathy deal. When it first happened I just kind of went into survival mode and didn't have time to deal with anything but just getting through each day that came. From survival mode I just kind of eased into denial mode and pretended that my usual personal motto of... it'll work out or it won't ... was actually okay in this case; only I now know it wasn't. I never expected to be at the constant ready to burst into tears at the simplest questions and having to be completely honest about how hard everything really is. It's embarrassing to break down at a simple question like, "Can you get dressed on your own?" ... "Well, yes... I can now, well, um, as long as I hang on to the wall or am sitting down, or leaning against the closet shelves," and then an ashamed tear sneaks out when I realize that technically no, I can't get dressed entirely on my own. I know there are still more questions to come but I am hoping to keep myself emotionally together a little better as time moves on.

I thought I was only to see the Physio Therapist today but I also met with the Occupational Therapist so I felt much more relaxed afterward knowing that two firsts were already behind me after just one day. It was a very easy day but I can't even begin to describe just how thoroughly exhausted I am just from a one hour timeslot!


- met the Physio Therapist (superbly kind and understanding)

- answered questions about things I struggle most with physically (walking, stairs, hills, balance)

- tested my walking gait and endurance which consisted of three trips back and forth along the long hallway between the therapy rooms and some offices at the opposite end (I managed five of the six minutes required)

- talked about what kinds of walking aids I might be open to trying

- talked about the massive muscle loss my body has gone through as the nerves are taking so long to heal

- talked about starting swimming therapy

- homework exercises for starting to rebuild my leg muscles until I am back in on Friday


- met the Occupational Therapist (also very kind and understanding)

- went through lots of assessment questions, basically checking to make sure I was safe at home and talking about how I can be assured that I am also safe when out in the community

- tested my arm strength which thankfully is really good

- again discussed walking aids I might be open to having to use while I am still unsafe walking on my own

- she is going to wait and watch for a few appointments to see exactly what she thinks will be best for me both physically and mentally to be able to deal with


So, all in all, I think it was a good first appointment. I am tired both physically and emotionally but I feel like I am headed in the right direction. Rebuilding muscles that haven't worked due to nerve paralysis in sixteen months is not going to be easy, especially since the nerves themselves are still healing but I am going to do my very best to make it happen! Tomorrow will be a quiet day, I will work on my exercises but lay low so that I am strong and ready for Friday's appointment.

My healing adventure has finally begun!!!


Occupational/Physiotherapy - Appointment 2: (June 3, 2016)

Well.., even a bad day is a good day for me so all went as well as could be!  I can't say my therapy appointment was exactly 'fun' today buuuuut... I can say I made it through.

My appointment today consisted of strength testing which beyond exhausted me but I was able to make it through every task test, a feat in itself! There were standing/turning/bending/walking balance tests as well as muscle weight strength measurements. I scored very weakly on all the tests but hey, at least I scored!

It wasn't long after tallying my scores when my therapist explained (very gently) to me that I will be needing a walker again... I had to brush disappointed tears very quickly away in hopes that the others in the room wouldn't witness my mortification at the suckie news. I know in my mind that I need to be safe when moving around but my heart is having a really hard time with the thought of again being stuck behind a walker..... so, other than for therapy appointments, here's to never leaving my house again!!!


I am hoping I will be through the program and back to my capable self before long but this part, even I have to admit... is pretty unbearably, heart-hurtingly hard. I know it will get easier, I know I will get better but..... well... yeah.......