Michal

Hello Everyone,

I’m a pharmacist and have been living for half a century. I learned about my wife’s Ataxia in October of this year. I must admit that I signed up for the hospital library specifically to read more about this condition, but on my wife’s genetic results, I noticed the address of this website, where I asked to add myself to it. Hence, I’m here and making a public confession.

My wife was treated for generalized anxiety disorder and was admitted to psychiatric wards several times. Medication doses were increased without any results; there was no improvement, and the medication regimen was increased. As a result, my wife refused this year to be admitted to the neurology ward of the Institute of Psychiatry and Neurology due to her previous experience. I was very irritated by her refusal to go to the hospital ward for diagnostics.

At that time, my spinal surgery date was approaching. I was supposed to consult another doctor about whether to undergo this procedure. I silently decided that “out of spite” that my wife refused further testing, I would show her too, wouldn’t seek another opinion, and would go for the surgery without a second thought. However, as the date approached, I began to understand my wife’s reluctance to go to the hospital and wanted to back out. I came home that day and, upon noticing the new pajamas and hospital slippers she’d bought me, I stopped looking for an excuse and went for the operation procedure. Thank God, the surgery was successful, and after five months, my wife received a new appointment to the Neurology ward and was admitted. 

In the Institute a suspicion of ataxia was identified, and two weeks later, the genetics lab informed us of an unclassified variant. Three variants were detected: one in the SPG7 gene of unknown clinical significance, potentially benign, and two pathogenic variants in the POLG gene. After this information, we went to the holy place in Gitrzwałd to ask God for support through the hands of the Blessed Virgin Mary. 

My wife is 47 years old, she is a beautician, and after these events she has started attending church daily to gain strength to continue her life’s journey. I’m happy because she’s coming off psychiatric medication. We have two children, a 16-year-old son and a 10-year-old daughter. I’ve recently changed jobs; have a better salary  but require more energy, and I’m on probation. I live as if the illness didn’t exist, but I feel more overwhelmed. I act as if I don’t accept reality and don’t believe in the illness. I live as if reality doesn’t change, is constant and unchanging.

I’m afraid that at some point I’ll wake up and cry heavily because I escape into work, pretending to be good and lose loved ones. I’d like to change, to start truly living in Christ and accepting reality, because I feel dead. I’m having a hard time coming to terms with my current situation; I have many responsibilities, and I suffer from a lack of time. There’s a lot going on. That’s why I’m happy to be here. 

Best Regards.