I keep wondering how I used to do it. Things are slowing down a bit and it brings a lot of mixed emotions. 3 years ago I was 100mph all day every day. I was a workaholic both in and out of the office. My goal every week was to build something, work on the yard, hit the lake, and in general just go go go. Last weekend we attached some yardwork. It really brought some clarity to me on where I am in my life and progression. I can’t pick up a 40lb bag of mulch and really struggled just to walk around the yard. When you struggle to carry a 1lb plant and walk it gets real.
To break it down I just can’t do it all anymore. It almost feels like I’ve aged 40 years in the past 3 months. It really had me down for a few days. The frustration brewed and I honestly just felt like quitting my job and curling up in a ball. My job has been a focus for me for as long as I can remember. More than that I’ve felt like the weight of that world fell on me. If I didn’t do my job the best I could people would go jobless. I mean that completely literally. Recently I hired another guy under me. I’ve known him for years and worked together previously. Reminds me a lot of myself a few years ago, and is a real go getter with a positive attitude. I have another guy working for me who is analytical and very composed. I thought the marriage of the two would help but it’s gone so much better than I thought.
To shorten this to the point I realized I don’t have to do it all anymore. I can truly start delegating and helping them grow into my position. I’m actually taking today off and working from home. It was a breath of fresh air. So, while I can’t do some things I’m discovering I don’t have to kill myself trying. Probably a lesson I could have learned much earlier in life. Its pulled an immense amount of stress off of me in the past few days just to know I can be flexible in my hours and where I work from.
So, per the usual it’s just ups and downs and trying to live somewhere in the middle. As far as my health goes it could be better and could be worse. My “good leg” is progressively going to crap. It’s rigid and feels like I’m in a 24-7 cramp. Going to try a new magnesium treatment to see if I can level out the spasticity a bit but it’s a bit depressing. I know the next step when this leg goes is a wheelchair and I don’t know how I’m going to handle that. My first leg completely went to garbage in 2 years but I feel like I don’t have that much time on this one. I guess only time will tell but I’m trying not to think about it.
As far as other symptoms I’ve been lucky. My arms seem strong and while I have fasciculation’s I really haven’t noticed any upper body weakness outside of the random moments of speech problems. Some great things are popping up in research though. Edavarone is up for FDA approval in June which is promising and I’m looking at some trials. There are also 100 other promising things out there. It just seems like I’m on a timeclock. I’m praying they find something to help give us all suffering enough time for there to be a cure or way to stop progression. That time just keeps getting shorter for all of us. Until then enjoy what we have and live the best we can.
This week was a strange one. As some know I’ve been on a major crunch at work. It’s been almost a year into a project and made my presentation on Friday. For the week, I was on a jobsite which is less than convenient for someone like me. It was cold, lots of walking, and nothing was comfortable. This was going to be my last push before I go back to my comfortable office setting.
Ironically, I got out of my presentation Thursday and felt fantastic. Pretty much nailed it and it was just a giant sigh of relief. I went to check my phone and had missed a phone call from my doctor. I’ve been waiting since my diagnosis for my gene testing to come back. I really didn’t know what to hope for. If it came back blank it didn’t mean I didn’t have ALS it just meant I didn’t have the gene. If it came back with an abnormality there was more hope to treat in the future and a solid diagnosis so I could get into trials. In the back of my mind I’ve just been hoping its celiac gone wild. I’m only a month or so into gluten free and feel a bit better. I know that my body should be regaining its ability to process which is great.
The troubling part out of all of this was if it was genetic my kids could be dealing with the same issues hopefully far down the road. Well the call confirmed that I have the SOD1 gene abnormality which is familial. Hopefully by the time my children ever have to deal with this there will be a cure but it’s my youngest sons birthday this week. I haven’t really broken down throughout this process but I broke hard. For me it gives me hope and SOD1 is basically what all ALS research is built around. Per my wonderful doctor this is the gene abnormality they could have an answer for in a few years. Now I’ve been around ALS long enough to know they said this 10 years ago, but I’m keeping that hope in my back pocket. On the other hand, what and when do you talk to a child about this.
When my father was diagnosed, there was little known about the disease and no gene testing period. It was the dark ages of ALS research and all I knew is it was rare. Now I know my children are carrying a coin flip of having this gene. It pretty much floored me and I don’t know how to deal with it. I’ve felt like I was being strong but this is different. This doesn’t involve me or my wellbeing. We are going to talk to the kids soon and that scares me enough but I know the kids are going to investigate the disease further. I can’t imagine what will eventually cross their minds or if they will even comprehend it. It’s made the weekend tough.
I joined my wife out of town Friday and we had a nice night in Pinehurst but I just felt out of it. It felt great to get out but things are so crazy right now. To be honest my health is bipolar right now. One minute I feel great and better than I have in years and then the next hour I feel total weakness. I’m not talking weakness like after walking a mile I’m talking almost paralyzing weakness. My right leg has begun to cramp and have fasciculation’s much like my left leg did but it seems to be going so much faster than before. I had developed in my mind that I had 2 years before I’d lose my other leg. I’m blessed to not have many upper motor problems but it scares me to think I could be in a wheelchair soon. Pardon my language but it just scares the hell out of me. I’ve always been independent and losing the ability to walk, drive, etc. is my greatest fear. I think I fear that moment more than dying. Death happens to everyone but taking away the rest scares me.
Everything has just become so much more “real”. I feel like my coordination is better now and my PT says my strength is up but I just feel different. I’m trying to focus on the measurable things I can instead of “feelings”. I haven’t fallen in what seems to be months. For a year, I fell all the time. I could just be cooking and collapse. It all stopped when I changed my diet and overall I just feel more coordinated. Then I try to walk into an appointment and feel like after ten feet I can’t make it to the front door. The fear almost feels paralyzing. The weakness is just so random and the cramping scares me to death. My kids bought me a walking stick for my birthday last week and while I hated the idea of using it this week I’ve needed it far too much. I probably should have been taking it far easier on the other leg but just didn’t know better. Now it just feels too late.
The thought of clinical trials is exciting though. A few were brought up and I’m more than willing to try and help if it never brings a cure for me. Some of them do look promising though. That’s part of the highs that I’ve had. My goal for the week though is to make more highs and less low’s. All of this gets overwhelming and I have to learn to focus on the important things more!
Back at it again on a Monday. This weekend was a doozy. It was my birthday Sunday so my wife was nice enough to plan some things. Saturday night I played poker with the guys at our house. It was nice to see everyone and honestly just nice to relax and have a drink. Sunday morning, we got back to the Church routine. Really great service and still working through Ephesians. The topic this week was “Do your job”. As a Patriots fan it made me giggle a bit. The overall lesson was for people to do the work of God and let the other things go. We all focus on material items that will last this life and less focus on the eternal life ahead. We are here to do God’s work and we get so sideways with everything else.
I’m as guilty as anyone for that. I spent a good deal of my life wanting the new cars, new boats, etc. and spent all of time trying to be successful. Not that we aren’t here for the purpose of God but I think “Do your job” goes so much further. We all have responsibilities in life that we lose focus on whether it be our family, balance in life, or even enjoying the natural gifts that God gave us.
Everyone has heard that hindsight is 20/20 but I’m not sure we think about what that actually means. Most of the time we think about it in business decisions or other things. What if we really focused up front. What if when you walked out the front door you really embraced everything as a gift? What if you took an extra 2 minutes in the morning to enjoy the sunrise? These are gifts given to us but we right them off as the status quo.
What if we changed our hindsight and focused on our jobs with our families instead of work? Smiling and teaching our children, loving our spouse, and following our beliefs is where we should be. I’ve found in reflection that not much of my life meant much. There were moments of good but never a focus on it. I’ve tried to change that but it’s a daily process. My youngest son is by far the most sensitive member of our family. He is constantly telling others how much he cares, offering to help, and just being a great kid. My other child is living the preteen life. I know eventually my youngest will turn to the dark side of being a teenager too but it really does empower me to see the young men they have become. Those are the rewards of doing good work. I envy them though. It’s easier for them to be good people. They haven’t been spoiled by sin and materialistic things yet and yet they are still happy.
People refer to the innocence and joy of being a child. In my mind, maybe we all need to shed the years of sin and distractions and get back to that. The difference in a child and a man should be a higher responsibility in doing our jobs instead of further losing our way. Just my thought on it but I’m going to try to be more of a child. I might not go to toys r us but I’m going to try to find my innocence again and integrate a higher purpose. Just my thoughts for the weekend. Hope everyone has a happy Monday. Enjoy it!
This becomes more and more of a struggle for me. When do you stop lying to others about what’s going on. I’ve been blessed so far with no major tell-tale signs except a dysfunctional leg and the random speech slurs. My leg is always a topic and everyone always wants to know what happened. I mean what do you tell people? Where do you cut the line at who really knows? I see a lot of random people daily through work and it just gets old lying. Then you wonder if you’re just doing the world a disservice by lying about it. Should people be more aware that this disease is out there. I mean we are talking about 1 in 300,000 people and to be honest between my father and myself I’m not sure I’ve had another person tell me they had ALS.
The reality is I don’t want to admit it yet but it stresses me out more to hide it. Regardless of feeling better and stronger now than 3 months ago the reality is I 99% have this disease. I’ve made my peace internally that I’m just going to ride God’s plan and live life to the fullest but I cringe every time I talk to someone about it. I’ve held off on talking to my children about this because we aren’t 100% sure and no child needs to hear that. I remember when my parents told me and I was destroyed. I don’t mean that in a light way by any means. That tore me to the core until he passed and then I was a wreck for years after that. Until I met my wife I was a professional at pushing people away and not growing relationships. To be honest I’m still trying to fix myself. Ironic that over the past 20 years I’ve shut everyone out from my feelings, find out this stuff, now I’m opening up, and one thing blocking me and bothering me is being open about the same thing that made me shut the door in the first place.
Anyways outside of that I feel pretty good. Fasciculation’s are still bugging me to death but changed up the meds a bit to help me sleep. They might tone me down a bit too much and the past 2 days have dragged too much. Lastly, I got my test results back for vitamins/levels and my vitamin D is still low. I’ve been taking 4000iu’s a day of D3 and just don’t get this. Body is just not processing well right now but everything else was in line.
So, I am continuing to stay on the gluten free diet and am feeling differences in my mental and physical energy. It’s almost like I’m 100% awake all of the time. I’m happy to have the energy but wow would I love to sleep. I take 10mg of melatonin every night and by 3-4am I’m wide awake again. My mind just never shuts down. It would take me 5 cups of coffee before to feel the way I do now 90% of the time.
So yesterday I went to PT and evidently, I’m showing some coordination improvement which I can slightly feel too. I boosted some of my reps that are to fatigue and she seems encouraged by my progress. I thought she might have not been paying attention but I went for my one month clinic visit today. My right-hand strength went from 106 to 110 and my left hand went from 84 to 110 which is a 50% increase. I’m trying to not get too much hope up that this is just celiac but I feel great. My blood pressure came back to reasonable levels, pulse is lower, and overall my body seems to just be performing better. I didn’t show any changes in other movements so in the words of the doctor “no change is good change”. Evidently, I should be showing some progression but it doesn’t seem to be there.
My fasciculations are going crazy but I was told that could be from stress, lack of sleep, or over exercise. I’m probably a bit guilty on all fronts. Work has been nuts, I don’t sleep more than 4 hours, and I’ve pushed myself a bit too hard. One PT there did say to not over exercise but don’t rob yourself of what makes yourself happy. Boom that’s me! I enjoy working in the yard and I like to go wide open sometimes especially at work. I was even told to slow down my walk a bit.
Overall, it’s all encouraging to me which is what I need right now. I will fight whatever this is and I will fight hard but my mental state is what I want to really keep healthy right now. I was told that I couldn’t be put in any trials because my diagnosis is only 99% and not 100%. In my mind that’s a win. Maybe it’s just delaying the obvious but your saying there’s a chance!
So, I’m taking a short break from a semi-crushing day. Seems like I’ve been on 60 hr. weeks for a while trying to get a job done. Its wearing on me a bit but my wife and myself both like to work even though it wears on us. So, I’m sitting at work last night talking to a vendor at around 7pm. He’s probably one of the hardest working guys I’ve ever met. Always on top of it and always has a positive nature. I’ve been giving him grief over not working late on our stuff. He responded back saying he would do this even if he won the lottery. I’ve always had the same outlook. Maybe I wouldn’t go at the same speed but I love my job.
So, I feel like I’m doing that right now. I’m playing against the house with time but I’m doing something that I love. My only regret about work is when it interferes with family life. I’m trying to balance that but it’s tough with deadlines and limited help. Regardless I sent him an email to set a reminder for us to talk about this in a year.
My advice is to do what you love and accept nothing less in a career. We could all die tomorrow and this moment is all you are guaranteed in life. I’m not sad about my outcomes because God has a plan. That may sound silly but God has a plan for all of us. There are far bigger tragedies in this world than someone living 33+ years comfortably and enjoying it. Children are having bombs dropped on them so it would seem silly for me to sulk over the life I’ve had.
The sadness I do have is for my family and what they are dealing with. That’s pages of words I’d rather not describe but we are trying to enjoy every day and keep the smiles rolling. I’ve been unusually perky since diagnosis day but I have had moments of frustration. I had one this morning and my goal is to further improving that.
Other than that, everything is peachy and I hope everyone has a killer day. Keep the smiles rolling and grab the bull by the horns.