Hi Everyone. My name is Mark. I wanted to share our story and basically just say hello.
My wife has had balance problems since I first met her over 12 years ago. We’ve been married for nearly 11 years now. She has never looked very fluid in her movements. She used to run somewhat but over the years, had backed away from it.
She has always been very active in life and SUCH a positive person. I love her dearly. Since her hand writing became challenged several years ago, and more recently she sensed other things were off, we were referred to a neurologist and diagnosed with CA in October of 2017. It sort of connected the dots for us on many things in life we have seen, but not fully understood for quite sometime. Not positive to learn that she has CA, but it did clarify things for us a bit. We went through comprehensive genetic testing which were inconclusive in demonstrating a genetic condition (very stressful and frustrating). She has no familial history of this condition. We have two children and it was a very stressful time in trying to do the genetic testing. After many neurologist visist and investigation, we are still unclear as to the cause (genetic or non). Our neurologist (Denver - Dr. Seeberger) believes that we can expect the same sort of progression that we have (unknowingly) experienced. My wife is in great physical health and has dedicated herself to working hard in the gym (and downstairs on our spin bike and work out equipment) as well as eating well.
I’m following suit and we are both in great shape. Sort of like that Pulp Fiction line… “My wife’s a vegetarian… pretty much makes me a vegetarian” Ha. She’s doing well all in all, but has issues with her walk and very mildly with her speach. She does not use any assisted devices yet. She is not a stubborn person and will definitely take help where she needs it. She’s great and I am very proud of her dedication and persistence in dong what she can to stay healthy.
I’ve felt scared for quite a while now since learning of this condition last year. I feel like I have gone through a process of acceptance and planning for our future, but still feel scared. I’ve started the process for seeing a counselor just to keep strong mentally and maybe learn more of how to frame things for myself. I have many questions that race through my mind though about the future… Will she be able to be independent in years to come (driving, showering, cooking, cleaning, exercising, daily stuff…?) Can people remain independent? I hope these questions dont sound selfish. I plan to help her every step of the way, but wonder if I can take all this on if things get really challenging. I know enough about this condition to know that there is a spectrum of symptoms and severity so my questions may be difficult to answer. Just expressing some of my question marks.
Luckily I have a stable job and very good insurance which has been helpful with the recent medical appointments. She is still working and plans to as long as she can. She has disability insurance through her work so that is something that we may need down the road as well.
We have two young children (6 & 8) whom have no knowledge of our diagnosis yet. As far as they know, their Mom is still just their Mom and we are moving forward in our life. You have use what you’ve got and move forward. Our strategy is that we plan to discuss with them what we know when/if the topic comes up. We dont want to overwhelm them with information and scare them with details. We want to control the narrative I suppose.
We have a dog who is a pain in the butt, but a wonderful part of our life too (black Labrador)
We are SUPER active in the outdoors too. Rafting, camping, traveling, etc. I suppose some of my fears have been related to thinking that we wont be able to do the things we want to do. I have overcome this fear (for the most part) by dedicating that we will adapt the best we can and keep active and perusing what we enjoy. I hope that is possible.
We are a good family (obviously I’m bias ).
Thanks for your time in reading our story. If you have any advice or feedback on how to frame the thought of “the future” and perusing the lifestyle you want, as well as the thoughts on family and children. If anyone has advice for a spouse of someone with this condition I’d be happy to hear from you as well.