Being real is hard. It puts you in a vulnerable position and you don’t know how people are going to react. Friends can drop you like flies when they hear news that they can’t happen to control themselves with. They don’t know how to react. Others will become closer to you and others again will stay the same. Although I try to control how my friends are going to react I know I can’t. That’s the psychological part of being us. I saw my neurologist on Thursday and I’m closer to a diagnosis.
Over the past year and a half I feel like I’ve been climbing a mountain and now that I have a diagnosis of such I can start to relax and be comforted knowing that everything will be OK. There are several parts to the diagnosis one being a possible genetic chromosome all mutation which I had blood work for this past week however because it so specific and needs to be taken to McMaster University and sick kids for evaluation and I won’t have the results for about nine months. The other possible cause and diagnosis is a psycho somatic disorder more specifically functional neurological disorder. This means that the software part of my brain and neurological system is incomplete and the pathways are blocked. This diagnosis was come because my neurological system continues to decrease however my MRI and CT scans and have a done Are clear.
What’s next? I’m going to be starting the Neuro Day program at Saint Joe’s hospital in Thunderbay on a more intensive still working with her occupational therapist speech and language pathologist and physiotherapist. I will also work intensively with the psycho-therapist that works at the Chronic Pain program as well as a social worker will continue to put referrals in as necessary to various other organizations to help. Working with this team will help me to regain some of the functions that I have lost. As well as making life more liveable and sustainable. Thankfully I will be able to restart swimming therapy which is been a huge outlet for me.
A referral has been sent to Toronto to you and neuropsychiatrist who does the official diagnosis of this disorder. They will then decide on the specific treatment needed which will probably include in patient care in Toronto for a while focussing on neuromuscular disorder with a psychological standing point. I’m learning to except this and except that even with the diagnosis it’s not just going to go away and it’s going to be a lot of Hardwork regaining control of my body again. With this learning exactly what FND is and reaching out for support from others who are going through the same thing through online support group networks. This rare disorder means that I am going to end up clinging to people I know that have it. My therapist has only ever worked with one other individual in Thunderbay who has this as well. Thankfully there are support groups online, mainly in the states that I can talk to. Thank you for loving me and supporting me through this as we continue to walk the circle around the sun together. The hardest part for me is talking about this as well as asking for help for the very basic skills but everyone should be able to do. I feel incapable and frustrated on a daily basis as I try to re-learn the skills. I’ve attached a YouTube video that I hope will work from a lady in a group that is also lived with this disorder. It will help people understand what it is as I learn too. https://youtu.be/418rc6ybfk8
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