MS Makes Me Feel Like a Child Again, and Not in a Good Way

Hi Benjamin, your post resonated with me like I didn't think it could. My father was diagnosed with Primary Progressive Multiple Sclerosis in 2018-2019 after many years of experiencing all kinds of pains and suffering, most notably in his back. It was an enormous adaption for everyone, most especially my father. As you said, it could be depressing to see a man as great as my father succumb to an illness little by little, but for us, myself, my sister, and my mother, my dad keeps smiling. He keeps joking and showing us in every way that he can that he is still our daddy who would tickle us and make us laugh with his strange facial expressions. Even though he is regressing slowly and needs more help than he used to, he doesn't let it eat him up inside; he stays strong and fights it as much as he can. I will never give up hope that there will be someone somewhere who will find a cure for this disease. In the meantime, as stated in Peter Pan, “All it takes is faith, trust, and a little bit of pixie dust.”

So, so true, Ben. I was speaking with my counselor recently about resisting the next stage -- a wheelchair. I said that for me it felt like a loss of competence. She said, 'I understand. But look at how you've mastered hand controls in your car -- to me, that's a whole new level of competence.' I hadn't looked at it like that.

Good day Ben from the great white north.

Your article could not have come at a more perfect time. Diagnosed a year later in 2015 with PPMS my career path rapidly changed from working in the field to an office position to medical longterm disability (retirement with early pension) by late 2021. Being very familiar with the career path such as yours and experiencing a very similar journey but in a different field, the hardest part with this disease is its reverse maneuverability. As you regressive deeper in to a life similar to your childhood, your mind remains some what at that adult level. Fighting with this adult ego and intelligence has been the catalyst to all of my big falls or accidents. I have found this the most difficult aspect of the disease to deal with. Everyday is a new journey with new barriers. The days started to become less of an impact the day I started to be compassionate to my situation and started to love myself for who I am and not what I could do.

It's still a journey with struggles and personal tests but I am moving further away from beating myself up for what I can't do. Thank you for expressing your trials and tribulations so others can know they are not alone.

Cheers
Robert

Hi Ben,
I so related to your post. I was diagnosed with MS in 2007. At the time, my neurologist thought that I might have actually showed signs of the disease 10 years before but those symptoms were always attributed to other things (I also have fibromyalgia and Reynaud). For many years after my diagnosis, I didn't experience any physical limitations - my husband and I took dance lessons and I was always out and about. About 10 years ago I found myself needing to use a cane, then I graduated to 2 walking sticks when I ws out. After many falls, I now use walkers in my house and can only go anywhere if my husband is home to assemble my scooter that we keep in my trunk. Although I have no problem driving, I find lifting my legs high enough to get into the car is problematic and where am I going anyway? I was always very independent and always out and about and I find my limitations very upsetting. It does make me feel like I am reverting . I totally get you.

One thing I'd like to mention is the keyboard of our computers and how adept a person can get with typing with one finger on each hand when necessary. My disease hasn't progressed as far as yours yet but there are times I have difficulty typing as well as writing and my computer is a god send because I can link my phone to it to text that way. I'm just now at the cane pont and that's only when my balance issues are bad enough to require it which at this point isn't daily.