(Summer 2019)
I’m now done with physical therapy, I ran out of the allowed days based on insurance. However, I’m walking fairly well most days without a cane on flat surfaces. If the ground is uneven, I use a cane to help navigate my surroundings. I was pretty confident that if I kept up with my exercises at home I would only keep getting stronger.
The lovely weather had arrived and my town was full of life. I live in a lake town and if you live here you can have access to any of the lakes along with the 5 beaches. I love this time of year and my kids were excited to get some lake time. We have several kayaks and a paddleboard. However, due to being medically unstable I stayed away from the water crafts. I ended up having to limit my visits to the lake and forgo seeing friends. The beach was full of activity and yelling kids. It was a sensory overload experience for me. Even just trying to follow along with a conversation while others in the group were also talking was such an effort for me. There were more times then I would like to say that I ended up having seizures while at the beach. Some would happen after just standing in the water and walking out of the water. I would try to stand up to my knees in the water and one day I even tried floating close to shore to expose myself sensory wise. However, my mind wants to do more than what my body is ready for. First my gait would get unsteady and BAM a seizure would hit me. My friends rocked and would grab towels to block me from kids or nosy people staring at me. I remember one time, instead of having to move me to the parking lot, the guys took the fence apart and pulled up the car right up to me. What service!
It’s a frightening and a scary thing to see someone have a seizure. My friends always handled the situations so calmly and I adore them for keeping me covered up. At this time, I had to really limit my time being out in the real world or a problem would arise. I still have to do that although the time is extended slightly. But this was and is my life. I’m hoping hard it won’t always be like this. The way I’m living is not a life.
I began to see my mental health doctors at this point. A psychologist and psychiatrist is recommended since FND takes away your life and you need someone to talk to. You need someone to help you process all of this change. I was having issues with depression and slight anxiety. The anxiety would become an issue if I was leaving the house. I would think, can I do this, will I have an issue and then think of the embarrassment if something did happen. Cognitive Behavioral Therapy is beneficial for FND patients, so my psychologist worked with me on that. I was so excited to see my psychiatrist since he was also a movement specialist and a neurologist. He had so much expertise that he also was familiar with FND, which many doctors haven’t ever heard of. So I really scored with him. He was actually referred to me by two doctors. One of which, is a movement specialist out of Philadelphia at the time whose name is mentioned often on FNDhope.org. I had waited 3-4 months to get my first appointment. I finally got to see her in August. She was and remains to be my main doctor. She is a great advocate and has ordered genetic testing for me, got me on medicine to treat my seizures and paralysis. She also got me back into physical therapy and wrote a letter asking for more days since this is a chronic disorder. She explained I would need physical therapy on a long term basis and then be placed on a maintenance program so my skills are not lost. It took time but it worked! She referred me to a Physical therapist who was trained in the BeST training method that Mayo Clinic uses for FND patients. Physical therapy didn't start till early October, by the time insurance fully approved it.
I was at the point of frustration and grasping at straws towards my recovery. Although I had these medical experts on my side I still felt I needed a more intensive week long FND program. The problem was, there weren’t many to choose from. There is Stanford California , Mayo Clinic (I would choose the Minnosta location), Massachusetts General Hospital (they had a year waiting list) and Shirley Ryan Abilitylab in Chicago that have the best reputation. I looked into all of these. I was denied by Mayo, since they said I was getting the care I needed already. The denial letter stated I could try again if my issues change or worsened. At the time, I could continue looking into Shirley Ryan, but I would have to drive there, get evaluated and then drive back home. Services if accepted wouldn’t happen until 2 weeks later. I just didn’t want to go through the travel to only get denied or have to drive right back in a few weeks. Some places were covered by insurance while others weren’t. However, if I can go from 70% recovery to better I would be willing to pay for the treatment and my lodging.
My birthday was in July. We kept it very small with just family to not over stimulate anything. I did talk my husband into going away for 5 days to Cape Cod in late August. I just needed to get away. It ended up being a very short feeling trip due to travel times but we tried to do as much as possible for the kids. Sadly, the trip didn’t go off smoothly as I was hoping for. I had a seizure one morning while in bed and spent half the day in bed. My husband brought the boys into town to keep them entertained while I rested. Another day we were able to take a shuttle boat over to Martha’s Vineyard which was a must for me. We brought the wheelchair and my poor husband pushed me around the island. However, being out all day, the heat, and the noises my ride back on the boat didn’t go well. There was a screaming kid, that even my noise blocking headphones wasn’t blocking out. I ended up having a seizure on the boat while I felt every eye was on me. One of my worst nightmares. Then in the shuttle to the parking lot another seizure occurred. So our pleasant day ended poorly due to me.
For people who have lost part of who you were would do anything they can to get their life back. I see people vacationing, going on day trips and enjoying life to the fullest and it hurts my soul. I am not doing that! I am mostly at my house or going to the doctors. If I go out, I only do so for an hour. I just want to be able to go somewhere with no worry, be invited and actually say yes to things. I’m hoping it gets better than this! My youngest told me that I should try out for America’s Got Talent. I don’t know what my talent is but okay let’s go with this. He said, “people with sad stories get a yes from the judges and you can tell your story”. He then said, “at night I lay in bed and wonder if you will ever be back to the way you were and it makes me sad”. He started crying and then I started crying. This isn’t only affecting me, it’s affecting my kids and my husband’s life. I need to get better for myself and for them….my loves!
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