Jan 17, 2019 Latest post:
Jan 24, 2021
Hello everyone, I am writing this to keep everyone up to date, who wants to know about what is going on with me health wise. I am also hoping it will help me to get my thoughts down in writing. I was diagnosed October 17, 2018 with Lou Gehrigs Disease (ALS). In a way it was a shock, in a way it made a lot of sense.
A little background. For the past 3-4 years I have been dealing with weakness in my left foot and ankle. I can not really pinpoint when I noticed a problem but it was a minimum of 3 years ago. Probably closer to 4 years. The first thing I noticed is that I kept rolling my ankle, like it was unstable. I also noticed I couldn’t curl my toes or go up on tip toe on that side. I didn’t think much of it and thought it would take care of itself. Probably a year or more went by. Nothing major happened but I did notice that left side was getting gradually weaker.
The summer of 2016 I was in a walking group with my friends, most of them being moms of boys who graduated with Luke and played baseball with him. I’m not going to lie, these walks were a struggle. I had a hard time keeping up. One of my friends said I was limping, I didn’t even notice. But I could tell something wasn’t right. I couldn’t push off the ball of my foot so it made me limp. I also had problems pulling my toes up and had a drop foot. Which would sometimes make me trip over myself. I thought maybe I am just too heavy.
After I got Luke moved to college the fall of 2016, I decided to finally get it checked out. I still didn’t think much of it. To make a long story short, I originally was diagnosed with a bulging disc in my back that was causing the nerve damage which caused the muscle weakness. I was going to have spinal surgery to fix it. BUT I was leery. My back didn’t hurt, it felt just fine. So I asked around and was referred to Dr. Janet Bay who is a well-known and highly respected neurosurgeon. I wanted a 2nd opinion from the best. At first she agreed, then she did not. Her and I struggled with my probem for about a year. She had me do numerous MRI’s on every body part including my brain. For awhile they thought I might have a brain tumor. But I don’t. None of the MRI’s showed anything. I did a boat load of blood work. I was seen by her partners. I had so many EMG’s I can’t even keep track. Dr. Bay did not think my spine MRI matched my symptoms as my bulging disc problem was very very small in comparison to the major muscle weakness I was having. She didn’t feel that was what was causing my symptoms. So she referred me to Dr. Uberoth who was a regular neurologist, not a neurosurgeon.
I spent about a year with him. He couldn’t figure me out either. The problem was my weakness and nerve damage was located only in my left leg. My other limbs were normal. It wasn’t moving. I was very concerned that I had ALS because I had a lot of symptoms from all my internet research (that I should NOT have been doing). Dr. Uberoth didn’t think so, because after 3-4 years it would have moved by now. It would be very abnormal to have ALS that didn’t move after that long. So I thought GOOD! And kinda let myself relax about it. He basically told me I would have have to live this way and that was that.
I was okay with that for awhile until I wasn’t. It really bugged me to not have a diagnosis. It bugged me that I limped around and couldn’t do a lot of physical things I wanted to do, like hiking, walking without a struggle, and any type of land exercise class. I knew I would trip all over myself if I tried anything that required you move your feet around.
In the midst of all this, i thought I had to get my weight under control. It certainly wasn’t helping me get around. I thought maybe it will help to get some weight off. My goal was to lose 100 pounds. I joined the weight management program thru Ohio Health, which consisted of classes and weigh-ins and rules and doctors appointments and blood draws (a lot of them) and no carbs. And meal replacement shakes, lots of those. I lost 94pounds in 12 months. That includes 2.5 months of being on 80 mg of prednisone which biggest symptom is weight gain. I was thrilled. I now know that the timing of all this was perfectly orchestrated. If I had a diagnosis earlier I probably wouldn’t be able to lose the weight. I just don’t think I could have been positive enough to do it. And it needed to happen. For my future. My diagnosis was exactly one year after I started the program. So now I just need to lose that pesky 8 pounds I gained back over the holidays. I still plan to meet my goal of 100. I was so close. But I learned I have somewhat of a food addition. My go to for any feeling is food, happy or sad. So I have to watch it. I have not been very strict the last few months and the pounds are coming back. I need to get my eating back under control.
Anyway, I got my family doctor to refer me to Cleveland Clinic last January. I messed around with them until October. My doctor there ended up leaving and I was transferred to a new doctor. I didn’t realize she was the ALS specialist there right away. Fast forward to my first appointment with her, October 17, 2018. I had another EMG scheduled before I was to meet with her. I just thought this would be another routine appointment with no new news. They did an extensive EMG which took 3 hours and it was like a mini torture chamber. I think of myself as pretty tough, but this was pretty awful. When I met with her, she started talking about lower motor neurons and upper motor neurons. I immediately knew. I knew what she was going to say. I knew an ALS diagnosis had damage to both. All this time I only had lower motor neuron problems. Now I had both. It had moved.
I have very mild deficiencies in my left arm. But it showed up on the EMG. And that was enough to diagnosis me with ALS. I cannot feel anything different than normal except for slight muscle twitching. Which I do have all over. I didn’t know that was a major sign. My other limbs still feel strong. Everything else had been ruled out at this point.
I cannot even tell you what that moment was like. I just remember saying “THis is bad, isn’t it?” My doctor said “yes”. I didn’t cry right away. I just sat there and tried to breathe. She talked a lot but I have no idea what she said, except she felt that I have a very slow progression based on my history and I am not following a normal ALS path. Which is all good news. She left so I could get dressed and get myself together. I called my best friend Gary. I had to figure out how to get home. I did drive myself home, not sure how I got there.
I spent the next 2 weeks with my two best friends, Gary and Michelle Johnson, by myside. We cried, sobbed,, grieved, you name it. It was awful and depressing. I kept working, although I was late a lot, it did make me feel normal for part of the day.
The next two months was a ton of phone calls, appointments, and decisions. It was all very confusing. I was constantly overwhelmed. I just wanted to sleep and escape my life. I decided to keep this from my family and friends until Luke finished his semester in December. I didn’t want to distract him and I really needed the time to grieve my own life and deal with my own emotions. I cannot tell you that I have mastered that because obviously I have not. I won’t ever be “OK” with this but I am hoping I can have some peace at some point. I feel like I am making progress but every day is a challenge.
In December, I knew I was going to have to tell everyone I loved. I hated it because I knew it would change their lives and hurt them. It made me feel better to keep all the hurt to myself. At least I had control still, once I told people I would lose control and it would all become real . I convinced myself to get thru the days that this wasn’t real. Once I told them I would have to watch them struggle with this too. I struggled so much to know what to say or how to give someone this awful news. Luke was the hardest. I spent the next few weeks making my rounds with Gary, who I couldn’t have done it without him.. We made a trip before Christmas to talk to my immediate family in Michigan. It was pretty horrible. My dad reacted the hardest and I felt so bad for him because I knew it would bring so much pain. I wish I felt relief but I didn’t really. I just felt really sad.
THe next weekend Luke and I went up for Christmas and we had a great time. It was nice to be busy and have all the little kids around. My family did a great job of not dwelling on my diagnosis so we could enjoy each other. I think we were all happy to just have time together as a family and enjoy it. There was still tears but it felt good to be together and support each other.
So that is where I will end for now. In my next post, I will talk about where I am now and what I am doing about this. And also how I got to the point where it became a very simple choice to go on living or crawl in a hole. My faith has made all the difference in the world. I am not going to say I don’t have terrible sad days because I think I always will, but at least I am not having terrible sad days every single day. One thing I have learned, along with other things that I will write about, is that I am a lot stronger than I ever thought.