I am Christine Ravely
living with ALS
ALS isn’t going to keep me from traveling!
To begin with, the first sign I had that ended up being caused by ALS was in May of 2019, when we were in Southern California for my nephew’s wedding. I wore a pair of dressy pumps – but the left one kept falling off, my foot couldn’t keep it on. I got an appointment with the orthopedic surgeon who had replaced my right hip six years prior. He didn’t know what it was, but thought it could be nerve connected. But, before he sent me for nerve tests, he felt I should try Physical Therapy.
After three weeks of failing to bring strength back to the foot, we were then referred to a neurologist two hours away – we lived in a very rural town 13 miles east of Sonora, CA. (We had been packing that summer for a move to Tucson.) That neurologist … said I probably I had ALS after two MRI’s, two nerve tests, and a few blood tests. He advised me to find a neurologist right away in Tucson.
I got an appointment with the Center for Neuroscience in September, after we moved down there. He ordered three more MRI’s, more blood tests and a nerve test. In December, he diagnosed me with ALS. But he wanted a second opinion over at Banner Health’s ALS Unit. I also mentioned that my cousin, on my dad’s side, had ALS, a very late stage of it (he died nine months later), and that my dad and my uncles and one aunt all had frontotemporal dementia. He said he would look into the test.
I saw him again in February, he hadn’t done the referral for me yet, but he did then and told me he wouldn’t be surprised if I switched, the doctor he referred me to was his mentor. I asked him if he had looked into the gene testing for me and he said he had not but would. He did mention that he thought I might have a slow progression with ALS symptoms, as the left foot drop was the only symptom so far, as much as it was worsening, though.
I got an appointment with a new doctor in March and she was very proactive, ordering me the gene testing. … She went over all my records and felt also that it was ALS. The gene testing took place about two weeks later and the results about three to four weeks. The doctor called me first telling me that I had the C9orf72 Gene Mutation but that little is really known about this. … I learned as much as possible that day, but again, it’s quite a small amount given the scheme of things.
In searching the government’s data base for trial drug studies, I did see one … that is looking at ways to attack the two main ALS genes, mine is one. As far as I am concerned, the fact that I know what caused the ALS is good – but I ask, why did it have to act on me? I am blessed to have only minimum symptoms – still the left foot and now a slight weakness in my right hand, causing me to drop just about anything the left hand picks up. Nothing on the right side. But, with those minimal symptoms, daily life at home has changed so much. My husband helps me into and out of bed. He puts on, at the very least, my left sock, sometimes I can’t get my right sock on, too.
Some days/nights are worse than others, I can’t get my pants off, I can’t get my pj’s on. I am not allowed to slice anything large, like an onion or potato – I cut myself because my left hand slipped, so hubby put the kibosh on that. He empties the dishwasher, he loads the washer and dryer. He helps me with all the things I used to do with ease, I am so fortunate that he is here. I have gone from a cane to a super duper walker. … We are still making travel plans, though! We are booked on a cruise in April through the Panama Canal, so far it hasn’t been cancelled. We have also booked a Mexican Riviera cruise out of San Diego in November. ALS isn’t going to keep me from traveling!