(March-June 2019)
I returned back to Kessler Rehab after my week EEG. But, this time I’ll be getting treatment as an outpatient for Physical Therapy and Occupational Therapy. I came into therapy on day one relying on a cane to walk. My therapists both were not familiar with FND and how to work with me, but they tried their best knowing how to work with other patients with neurological issues/disorders. I now know that there are certain ways to work with a FND patient during therapy. Visualization of the skill you wish to complete can help you stay focused and complete the task. Also, working the patient right to their limit but not crossing the line and triggering them into showing symptoms is a tight line they must walk. But, at that time I didn’t know this and we were all learning as we went on with each treatment. I was pretty much having an issue 50% of the time, usually during Physical Therapy.
My Physical Therapist wanted me to not use my cane while in sessions. I walked like a robot, unable to walk and sway my arms in a natural movement at the same time. The more I thought about walking correctly the worst or off step I would get. Tremors may appear which would throw off my balance even more. But, I just couldn’t get myself to walk smoothly and at a regular speed (I was very slow/cautious). We worked on strengthening, walking, steps and endurance while walking on a treadmill or using a bike.
During Occupational Therapy, I worked on hand and arm strengthening tasks since I was showing weakness on my right side (legs included). I also worked on catching a ball that would help with tracking an item and eye hand coordination. I typically was good during OT, with only one issue which the therapist was able to calm me down before it escalated to anything more. I had come to her from PT and was shaky which was increasing which made walking over difficult. After calming me down with deep breathing and a starter task to distract my mind I was able to calm my body enough to finish my OT session.
But PT by far would push me past my limits often. I’ve had seizures on a bike (falling off), on the steps, and during strengthening machines just to name a few. The staff did their best to help me during these crisis situations and I’m thankful that they never had to call 911 after each incident. They just made sure I was safe and waited it out. Luckily, since my license was being withheld due to the seizures, my husband was always in the waiting room and was able to assist or come to me soon after. I would never be able to walk out after the seizure, luckily we kept a wheelchair in the trunk (which we still do).
Although I had my share of struggles, frustration, anxiety about coming to therapy I did leave therapy in June not using my cane. I only used it when I was having an off day or had a little set back. Overall, therapy did help me! While my therapy was coming to an end, I also was in search for a new Neurologist. I had reached out to my doctor to share that I was having an increase in seizures and had some blood work that was alarming. Her reply was “I don’t know what else to do for you at this time”. So on that note, I wasn’t going to waste my time/recovery with a doctor who has given up on me. Sometimes, you have to be your biggest advocate and fight for what you need.
Possible trigger warnings- This was a day during PT. I was practicing walking and then she wanted me to work on the steps. Well, my body had other plans
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