Day 15-23: A normal Week

I took a week off from writing. Some of it intentional and some of it not. Work has been busier than usual and trying to finalize some projects. I did however want to take a week off to live “normally”. It helps sometimes to take a step back and not think about things. It was nice and really helped me focus on work.

As far as how I feel I have really been feeling good until Sunday. Felt a bit of a pep in my step so to speak. I’ve continued to eat healthy but do struggle with eating enough. I’ve subsidized some snacks and meals with smoothies and shakes when we are on the go but generally have tried to eat a real breakfast and make a conscious effort to eat whole meals.

Saturday night I got knocked down a peg. I’ve been gluten free and haven’t had a drink in weeks. Actually, seem to have regained a little movement in my calf and my fasciculation’s were down to a minimum. So, Saturday night I go out with some friends for a buddy’s birthday. I’ve been a bit absent from seeing people and trying to collect my thoughts so this was a first for me since I’ve told anyone about the ALS. Had a really good time and it felt good to let loose for a few hours. On the way, the panic hit and I had no idea what I could drink. Google to the rescue! Vodka tonic it was for the beverages. Ordered a nice grey goose and tonic with a lime and sipped away. Had a salad for dinner which absolutely sucked since it was a wing place. Just not the kind of place you trust to ask for something Gluten free.

So, I have two drinks and start heading home. Keep in mind this was two drinks over 4 hours. About a mile from the house I noticed my vision was blurry again. Before I started eating differently I would get double vision on dark nights. Nothing horrible but the glare off the street lines was awful. Felt a few fasciculation’s and thought I just overdid it that night standing up for hours. Went to bed and a few hours later woke up in excruciating pain. Cramps were hitting and shooting pains down my legs like someone had a knife in my foot. I felt the same way a few weeks before when I ate some bread and just wasn’t thinking. Oh, wow did it keep going.

Sunday I was curled up in the fetal position. To this point I’ve thought some of the Celiac stuff was just in my head. Like oh I’m a feeling a bit better and maybe it’s just my imagination. After some quick searching, it turns out potato or grape vodka is gluten free but wheat vodka like grey goose still has traces after being distilled. It was almost a relief to know I’m not crazy but the pain was definitely real. Monday was a real drag to get up and I still felt the effects. Still having bad fasciculation’s but the cramps are gone.

Monday is PT day but I haven’t seen my therapist since my evaluation. She really pushed me today which I needed. The last PT I saw was a 400lb woman who didn’t seem to care what I did. This one challenged me to push it a bit. Pretty great feeling until I limped to the parking lot. Felt like years ago, when I’d hit the elliptical until I was jello. Definitely took a few hours to get my legs back under me.

Overall besides the accidental poisoning I was taking steps in the right direction and learning how to eat. The wife was great and took me on a Gluten Free food finding mission. We did miss church on Sunday which I was disappointed in but I just felt like crap. Overall I still feel very happy and centered which is new for me. I’ve always felt off balanced and things just seem more in front of me know. Going to try and continue on with that.

Day 13 & 14: The Weekend   

I’m sitting here on the porch and its 70 degrees in February. Not a bad gig. Yesterday I woke up wide open. Proceeded to hit up some yard work trimming all the hedges and cleaning up. I’ve come to the conclusion we have too many bushes. I love working outside and sliding some headphones in and relaxing does wonders for me. The kids when outside all day to play with the neighborhood kids which is something I need to push on them more. It’s important for them not to miss these days in their lives. I say that but they are probably upstairs playing Minecraft and taking it easy today.

Anyways I got all that done and decided to keep rolling. Washed and waxed the truck because its looked like a hot mess since the winter storm. About half way through that my body called it quits but pushed through it. Man, do I feel it today. Just last week I was told to not push myself until it hurts and today it took some major power to get up for church. Regardless I really enjoyed it and God has blessed us with some beautiful weather. Wish I didn’t feel like I got into a fight with Mike Tyson or I might go another round today. Overall that was a great day. Kept pumping my body full of food and finally got my calorie intake up. My goodness it’s hard to slam in 3000 calories. Evidently the doctors want to plump me up.

Today we got up early for church which I’ve really come to enjoy. My mood wasn’t great and I just generally hurt. Our normal Pastor wasn’t there this week so we took a break from the scheduled sermon. To be honest I wasn’t listening the way I normally do. I wasn’t taking it all in but something caught me. The Pastor discussed how Christians tend to expect new Christians not to fall down and compared it to parenting a child. We can’t expect a child to walk on day one. Also, another hot topic was how we think we are working for God instead of walking with God.

I spent a great deal of my life thinking I believed but not following anything close to what God would want. My treatment of people was subpar to say the least and while I tried to be a good person I was selective in that to say the least. My wife asked me a few weeks ago, to make a list of things I wanted to do in my life if it were to be shortened and I couldn’t think of much. The things I want are out of my grasp right now. I want to run around with the kids, I want to go out to the lake to swim. My biggest want in life is to walk up a set of stairs or better yet run up them. I want to do all of the things that I didn’t appreciate enough before all of this. I have my regrets in how I treated people but I have very few regrets in things I’d want to do. I’m not a person who cares about sitting on some exotic beach or climbing the highest mountain. I was so content in my life but not appreciative enough.

So, when asked to list those things they are short in dream vacations, etc. My list is to be a better person, to try and mend some of my mistakes, and to be more of who I’ve always needed to be. Our failures in life are what make us who we are. I don’t regret a lot of my mistakes because they took me down the path of life to find my wife, to find my children, and to find a lot of success. My regrets are the harms to people that I caused along the way. Those are the regrets you can’t take back but can try to mend and mitigate in the future.

So to tie all of this in I don’t want to work with God and will work on that. I’ve tried to do small things like making people smile and trying to be a better husband but even these steps are hard. I’m stumbling but trying. Maybe theres hope for me physically. Maybe I have Celiac and not ALS. Maybe I have both but can help or reverse some symptoms. Maybe 5 minutes before I die there will be a cure. Maybe none of that really matters. I know my life doesn’t end on this earth but it does scare me. Not because I don’t believe but becasuse I see my past sins so much more clearly now.

I’ve posted several times and told myself for my entire life that I was emotionless and that it was on me to provide my happiness. The truth is I was doing it all the wrong way. I was focused on being the best at my job or buying material items and that made me happy. The truth is I had it so good and didn’t enjoy it enough. I found frustrations in others. Like Christians need to help others from stumbling I needed to help others more and let others help me. I’ve stumbled so hard and never let the help come.

I missed that Boat by so many years but if you are reading this grab the help, help others, and walk with God. Everything material means nothing. It’s a farce of false happiness but the truth is all around us.

Live it, Love it, Cherish it. To throw in a little Dave Matthews Eat, drink, and be merry for tomorrow we die. None of that is literal but the figurative nature of it is so true. Go home and hug your wife, hug your children, and appreciate the steps God gives us.

I’ll end with this. I’ve questioned why I’m writing this blog and others have to. It’s self-revelation and the hopes that someone will read this who needs to. Even in writing this I’ve realized my sadness today is a wasted moment, a wasted gift, and yet again I have stumbled. I love you all and want to share that.

Day 12: A Mixed Bag

So, this Celiac thing has me all jacked up. Do I have Celiac? Do I have ALS? Do I have both? Do I have time to think about this? Does it really matter? Can you’ll get this biopsy done like yesterday?

Hope is a powerful thing and my nerves are shot. Work is going 100mph and I’m trying to keep it all straight. Today has been probably the worst as far as symptoms go. Stomach is having spasms, pins and needles in my other leg, fasciculation’s are hitting like a hammer, and I just can’t think. The past few weeks I’ve had massive blanks in my memory. I don’t mean like “oh where are my keys?”. I mean like what is my birthday or not remembering someones name who I’ve known for years. I’ve dialed back on my happy pills over the past few days but it’s not helping. The double vision has been absurd too. It’s mainly at night but its bothering me occasionally and randomly.

Its early in the afternoon and I have scrapped work for the day and just popped a melatonin. I’m just in total overload. The overload isn’t work or anger or anything like that. I just feel like I’m full of high, lows, and every mix of emotions. If this post gets weird I’m about to fall asleep by the way. Houston the melatonin has landed. I hate to scrap a day but at 4pm but its opening day for ECU baseball so I have another good excuse to lay down, relax, recoup, and enjoy some Pirate baseball.

Day 11: Let’s get Weird!

So today was interesting. Lot of test results came back from the Clinic visit. For one my Vitamin D levels are far below normal. Highly odd since I drink 4-6 glasses of milk a day, take a multi vitamin, and have been eating so clean. Going all WebMD on it and it could be amplifying my symptoms like fasciculation’s and cramps. Seems to be a big problem with ALS patients and speeds up progression. Second my celiac test came back abnormal so I get to go have an intestinal biopsy. That sounds awful but Celiac can actually mimic ALS. I could also have both.

Overall the results were weird enough that I got a direct call from the doctor. Was told to take 2000 iu of D3 a day and they would retest at the next appointment and a biopsy is being scheduled. Basically, Celiac could be an ALS mimic or I could have both. The crazy thing is I was told those who have both have been treated for the celiac and in a few cases the ALS symptoms have stopped in progression or actually reversed. We are talking slim here but just another chance at a positive.

Work is crazy right now but my mind is right. The call did send me into a google dive for the last hour of the day and I’m sure I’ll be into it all tonight. The fasciculation’s are out of control but less bothersome at night. For those suffering at night Melatonin is a God send. I haven’t slept this well since my kids were born. Its helped with focus and really feel driven during the day minus the mind cloud I’ve been in and short term memory loss. Evidently that could be a side effect of the Vitamin D deficiency. We’ll see how that progresses.

All the possibilities are cool and keeping everyone upbeat. Maybe just a stay in execution acceptance but hope is a heck of a driving force in life. I hope everyone else had a great day and we’ll keep taking this thing one day at a time!

Day 10: An array of reactions

One thing that’s become glaringly obvious to me over the last week and a half is how different we are as people. We all react to different things in such different ways. My family has slowly discussed with close friends, coworkers, and family. I have a history of ALS in the family so we have had a 20-year head start on a lot of people on how to deal with feelings. To be honest I think a lot of my lack of emotion is due to this. I was so young when my father was diagnosed that I barely remember it. It’s all very spotty to say the least but I honestly can’t remember the day I was told. Regardless I’ve always been lacking in my emotion. I had a lot of anger issues but it takes a lot to legitimately upset me in other ways. I tend to worry less and try to be more deliberate in my actions to prevent emotions.

Over the past week and a half, I’ve seen so many different reactions. Shockingly my mother has processed this so well. Maybe she’s hidden a lot of it from me, maybe she just knew it was coming, or maybe her faith is just that strong. She has been great which is saying a lot. We have had rocky times throughout life just like most families but she responded with “if anyone is going to beat this it would be you”. While I know, this isn’t something you can really “beat” it is something you can fight. That meant a lot to me. Others have been almost angry and others have gone over the top with the condolences. Maybe I’m a robot or maybe I just know God has a plan but the over the top condolences make me want to vomit. I didn’t lose a child or suddenly die. I have lived a blessed life and accomplished a lot. Bottom line is if I’m not crying for myself why not join in the smiling for a while. Let’s save the sadness for later down the line and live life like there’s no tomorrow. Do God’s work and move onto the next day.

This isn’t a post about me or my feelings it’s a post about life and people. We as a people wrap ourselves in our sadness and the bad things in our life. We become infatuated with the things we can’t control and lose sight of the gifts in front of us. Everyone gets knocked down but not everyone gets up. What if we took getting up a step farther and looked at the getting knocked down as an opportunity to stand back up? What if all the potholes in life are just reminders to appreciate a smooth road? Bottom line is if you get punched in lip let that swollen lip just be a bigger smile.

Day 9: Happy Valentine’s Day

So again, I’m a day late and a dollar short. Was just beat yesterday so catching up today. So yesterday was the big day of the first clinic visit. What a long day that one was. Got done at 3pm after showing up at 7:45am. We met the entire team and did every test possible. Pretty much received a 99% confirmation that its ALS but still doing some testing for some deficiencies etc. It wasn’t exactly how you picture Valentine’s day but I spent the entire day with my wife regardless. She’s such an angel and dealt with my issues all day.

Good news overall is I’m the healthiest dying man ever. Strength is there everywhere but the leg and starting PT next week to see if I can regain some of that. So much to take in but a lot of hope in the fact that I’m in great health otherwise. I’m starting on some new meds for a month so I can be eligible for trials if my other tests don’t rule out some mimic of the disease. I think everyone was shocked I still had strength all over. Hoping the progression stays slow and can actually improve some.

My only two gripes of the day were the dietician and the girl taking blood. First off I have a problem taking diet advice from an obese person. I’m not saying that really affects her ability to do her job or diminishes her knowledge but I used to workout religiously and really watched my nutrition. I was never ripped but could go 120% on an elliptical for an hour. Basically, told me to take in more calories and not to worry about what I’m eating. Let me say I stopped listening right there. You are telling me that my body is attacking itself and I should go eat cheeseburgers? Not going there. I had pizza last night out of laziness but have stricken any other processed foods from my body. Maybe they tell you that since they don’t want people to not enjoy the small things like eating. My thing is the whole process is about hope and kicking butt. This isn’t a sentence for me it’s a challenge and Burell’s never back down from a challenge. Reinstalled my diet app that I love. If you are looking for a food tracking app Lose It! Is the bomb. It has a lot more data for foods than other products I’ve tried.

Overall, she was trying to calculate caloric intake I should be at and I just laughed. I told her 2600 baseline but was going to go for 3000 with a new workout regimen. ALS eats calories and I’m taking Coconut oil at 6 tablespoons a day which is roughly 700 calories and a protein shake which is roughly 450 calories. So, you are telling me you want me to only eat an additional 1350 calories divided between 3 meals and 2 snacks? I’ve lost 4 lbs. in 3-4 weeks on healthy eating to create a 180 baseline which is 25% body fat roughly without major calculations. Anyways I wasn’t impressed. I’ll keep a log and throw what I find under the nutrition page. I was also told to stop the supplements so I can get on trials. I don’t have a problem ditching some things so they can create baselines for research but I’m also not going to stop things that I have found to help. Anyways I’ll dive deeper into nutrition later. I’m not an expert by any means but I’ve managed my weight & nutrition in depth for years.

The only other person I had an issue with was the poor woman for bloodwork. I’ve probably had blood taken 100 times and never had a person miss a vein. I have veins like a heroin addict. Ray Charles could take my blood while simultaneously playing stairway to heaven on the piano. This woman missed 5 times and was “fishing” once under the skin. Thought I was going to jack her up. So now I have EMG bruises and I appear to have a heroin addiction……..SUPER!

Knocked out the appointment and headed back to the office to knock out some work. Rest of the day was spent on the phone telling people things we already knew. My wife was upset obviously but she’s my rock. Hit a few hard patches through the day but she popped that smile right back on. Smiles are a contagious thing and a day shouldn’t be spent without lots of them.

Only other thing that became the joke of the day is that they now offer a program to record your voice. Basically, you speak into a mic and read a few hundred sentences. The program allows you to type later in the progression so everyone hears your voice instead of a robotic voice. I am joking but I need to mix in some Morgan Freeman or Optimus Prime. I told my wife my last words (hoping they never come) may be Buzz Lightyear saying to “infinity and beyond”. Not sure she found it humorous but if you can’t laugh what can you do?

Now I’m going to go knock some work out. It’s going to be a wonderful productive day!

Day 8: Just another day

Had a very nice weekend and just another day in the office. I have upped my melatonin a bit and have been sleeping well. Today I was a bit out of it which never bodes well for a Monday. Spent a lot of the day making phone calls and getting items corralled for tomorrow since I have my first clinic visit. I’m sadly excited to start seeing real doctors. Not writing off the seriousness of what we are dealing with but dear gracious have I seen some special people over the last year. It will be nice to see the best MND doctors around. I’ve really felt chipper the last week but was just dragging today. I totally blame The Walking Dead for the fatigue though. I have an employee that has seriously stepped up his game since I’ve dropped off a bit in production. It’s really nice to feel like I don’t have to do everything. Help is nice in the right doses.

We are heading out early tomorrow for what is supposed to be an all-day adventure and will most likely have a novel tomorrow but today was fairly uneventful. The only thing I really found funny is that people keep asking me why I’m so chipper. Two people today asked “are you really ok?”. If I’ve done one thing right in life it was finding a job and a place of employment that I love. Most people hate their jobs and I find it to be rewarding. Not because it’s the most particularly most interesting work nor am I doing anything that’s never been done, but I work with good people. It’s a good Christian company that values their employees and ethics. They trust me and have given me lots of freedoms to do as I see fit. I don’t work a 9-5 watching the clock to leave. So, the simple answer is yea I really am happy.

Getting any bad news sucks but that’s not an excuse to give up on life. If or when I can’t do these things is when I’ll be hurt but until then you have to rock it out. If nothing else I have a new grasp on life. How many people rinse and repeat misery in their life every day? How many people could die on the commute to work? How many of those people could have done more? It’s all sad that we waste so much life complaining and not really living.

So really the question is why wouldn’t I be chipper? Would being sad, crying, or quitting change my outcome in life? Life has no map so enjoy the ride. God didn’t bless us with life for us to waste it worrying. I think this is probably something everyone needs to think about.

 

Day 6 & 7: The First Weekend

So, I didn’t write this weekend. Had a lot going on but it was beautiful here and it was a bit hectic. We went to see my wife’s family for the first time and it was a bit overwhelming. It was my father n laws birthday weekend so they had a surprise party at the house. Of course, he knew about the party so not so much of a surprise. Overall I think I held it together pretty well until the end and then my anxiety got the best of me. Overall was nice being with family in general.

Sunday was great. I woke up like a firecracker. I’m an awful winter person in general. After football season, I crawl up into a ball for 2 months and hibernate. My favorite thing is working in the yard with the sun on my face so the temptation an 80 degree was too much to not take advantage of and I was looking forward to it.

We headed to church. It’s no secret to my wife that the church we are attending isn’t my traditional bread and butter. I’ve usually gone to traditional church and quite frankly I skipped out for a few years which isn’t something I’m proud of. I wasn’t listening to what was being said but I feel like God has been grabbing my attention lately with signs. Sunday was a sermon on Ephesians. Boy, do you want to talk about something that hit hard. I hate to call it cliff notes but the way the sermon went is that we are dead within our sins and that we truly can’t be saved until acknowledge God as our savior and try to fix who we are.

For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.

What it made me realize is I have to stop and acknowledge my sins. The answer to salvation isn’t that you are a good person but to believe in doing his work and avoiding the temptations of sin. None of us are perfect but I have done my fair share of sinning. I don’t mean that in the fact that I’ve stolen or broken commandments but in the fact that I haven’t been who I need to be. I’ve not truly opened my eyes to the gifts that I’ve had. I’ve pushed people away because of my fears. Maybe I didn’t feel good enough or maybe I always knew my genetics would catch up with. Heck maybe I’m just scared to be loved. Regardless it opened my eyes a bit to the fact I haven’t been living in the way I would want to be judged in God’s eyes. I’m not saying I’ve found myself but it helped chip a bit off the corner into knowing who I need and want to be.

Anyways off of the mushy stuff. I got back to the house, mowed the grass, and washed off the back porch. I felt great. Maybe just the warmth was helping. When I get cold my nerves don’t seem to work. Maybe it’s the clean eating, or the not drinking, or even just how loving my wife has been but it was all coming together. It just felt good to be me.

Then it got a bit messy. I love my family and my wife’s family. They love us and I try to appreciate it but I personally hate being helped. I’ve always wanted to be the man’s man. I can chop down a tree with my bare hands and Chuck Norris fears my shadow. Over the last week, it’s been “what can we do for you?”, “can I pick that up for you?”, and other offers. My mom randomly showed up to help with yardwork, my sister n law offered to move in for a few months to help, and my mother n law called my wife to talk about what we needed. For the love of Pete I feel more alive now than I have in a year and now people want to help? Two months ago, I cooked Christmas dinner for ten people and couldn’t get anyone to cut an onion and now I need life support?

Anyways my wife was feeling what I’ve been feeling for the past week which is her toes stepped on. Her mom was preaching to her about opening up and my wife was visibly becoming upset. I grabbed the phone and politely said to butt out. We are two strong people and we want to live as normal as possible for as long as we can. For year’s I said what I wanted to probably to a fault. I’ve backed off of that mostly due to my wife calming me down a bit over the years but there it does feel a bit good to know I don’t have to hold back.

I don’t mean that I’m walking around the room going screw you, screw you, screw you. It means that I don’t have to fear who I am anymore. I don’t have to cover up my feelings for the fear of not being accepted nor do I have to change who I am for the comfort of others. We are who we are in life and I want to die being who I am. The joke is that I started feeling alive the day that I started dying. Everything is more peaceful, the sun is a bit warmer, and all of those other typical things people say. It’s not a lie though and I really am happy. While at some point we will need help it’s not there yet. The love is misdirected from family but appreciated. My wife knew how I had felt with toes being stepped on and as small of a thing as it was its just another thing we understand about each other now.

I hope everyone had as good of a weekend as I/we did. Just remember if the life you are living today isn’t something you would be proud of tomorrow you just aren’t living right.

PS: I’m going to get some additional sections going this week such as what I’m doing nutritionally with supplements and diet so that should be interesting. I can’t say how much better I feel eating clean now.

Day 5 ½: A Different Perspective

So, I usually try to address my thoughts once a day. I only work half days on Friday so tried to knock it out early. Needed to go do some errands one of which was a haircut. I’m an ugly man on a normal day but after 5 weeks without a haircut it puts me over the edge. So, I go to the local men’s haircut place. After about 5 minutes a young woman calls me in. She has a slight limp and I also have a “swagger”. She asked what happened to my leg and I blew it off and said I just have a flat tire. She was obviously having a hard time walking and obviously had problems with her hands. I wasn’t sure what was wrong and asked her if she was ok. She told me that she was in a car wreck years and years ago, and was in a coma. Actually, showed me a scar on her hear. Basically, broke it down that she was told she’d never walk again. We kept talking and she asked what I did for a living. We talked for a bit and I asked her how long she had been cutting hair. She said just a few years she was a dancer (ballerina not pole) before her accident but she had to learn something new.

I’m not the guy who looks at daily events as signs but it’s been the weirdest week of my life. First the bad news, then the random cancelation that got me into a world-renowned clinic, and then this poor woman basically tells me how her life was shattered. She asked if I had Valentine’s day plans and I told her it would probably be a low-key night with the family and take the wife out another night. She told me her son was her 8-year-old son was her valentine and they were going out to dinner. She wasn’t wearing a ring and all I could think is how this woman was broken, her dream taken away, and learned a new trade. The crazy part was she was the happiest person I’ve met in a while. She was genuinely happy and seemed content. Maybe I was trying to make myself feel better but I left her $100 tip and tried to sneak out the door. She ran out into the parking lot and actually hugged me. Crazy stuff. Selfish side of me just felt good doing something for someone that strong and hoping I could ever be like that.

I just feel like all these weird things are happening and God is talking to me. All I know is I’m going to try and listen more.

Day 5: Friday Friday Friday

It’s Friday baby! Nothing like the weekend to perk you up. So, this week was my first adjustment of my diet in a long time. Up until a year and a half ago I was on my clean eating/working out kick. Basically, had a scheduled meal plan, wasn’t eating processed food, and was doing 30-45min of hard cardio a night. Once my foot went I let off the gas. Let’s eat some ice cream, drink some 1000 calorie beers, and sit around. Ballooned from 168lbs to 186lbs. So, this week has been fruits during the day, no coffee, no soft drinks, protein shakes, and green tea in lieu of coffee. Also, was taking Unisom to sleep and tossed it down the toilet to switch over to melatonin. By the way Melatonin works well for those suffering from sleep. Unfortunately for me I popped one too early and woke up at 1am. My wife was being courteous and was popped on the couch so she didn’t wake me up.

It’s amazing how just being with the one you love changes things. She got into bed and I felt that love. Doesn’t hurt I took another melatonin either haha. Woke back up at 6am ready to roll. Although I will advise to take the melatonin later and only once. I probably walked into 5 walls before I got into the shower to wake up. Playing bumper cars with a flat tire of a leg isn’t fun. Regardless the lesson of the day is that love fixes everything and shouldn’t be written off regardless of your health. Material things don’t matter and I spent too much of my life searching for those things. Let’s buy a boat! Let’s buy a bigger boat! It’s great to follow your dreams but love and family are what matter. They are your strength and so is God. If you let those two things into your heart you can’t go wrong. Overall you can’t take those things with you. PS: Green tea tastes like crap.

Leaving the deep thought area, I scored an appointment next week at the ALS Clinic which was looking to be months’ worth of waiting just to get in. Thought I was going to cry when I got that call. I don’t have the expectation of being magically healed but the last years of my life have been riddled with doctors who didn’t seem to care. I was pushed out the door with a “nerve injury” and told to come back in 18 months. Then it was a doctor who said you probably have an MND, here’s a referral, a huge doctors bill, and I’ll see you in 3 months. Heck they sent a poor PA in to break the potentially bad news. This clinic seems to be full of people who actually care and I need that for hope. I’m not disillusioned into this being my saving grace nor do I see this magical light at the end of the road. What I see is an opportunity to offer myself up with a potential upside. The problem is these clinics are so backed up it appears they rarely see people with early onset. It’s odd but I want to be a test dummy. As a possibly familial case I want as much learned for other families and for my own.

That’s all I’ve got for the day. Everyone smile for a day and you might smile again tomorrow!