Thoughts from Hope

Thoughts from Steve

March 29 2014

 

 

 

 

 

 

March 21 2014

 

 

 

 

 

 

 

 

March 25 2013

Though ALS is a very hard thing to deal with it has shown me that there are wonderful things about humanity that are still out there. Examples of this are present everyday through: people sending positive messages, people walking up to me & Hope Cross Dezember & saying God bless you or something kind, giving Hope praise for taking care of me & not leaving me, people waving or beeping when they see the van, and most recently we've had a musician/artist Michael Franti reach out & say he would like to meet me & Hope at a festival we are going to as he thinks we are an inspiration. Now I know me having ALS is the reason for all of this but it makes me think of the opportunity we all have to make someone's day better that needs uplifted. Everyone needs a little help every now & then. This opportunity to brighten someone's day is a gift from God we all need to take advantage of. Whether it be holding the door for someone, giving a big tip for great service, being there for a friend going through a hard time, saying hello & smiling to people who obviously need it, etc. obviously there are many ways to help make a difference & I personally want everyone who reads this to take it to heart & make the change to start helping & uplifting people they encounter. I recently was told an unbelievable story about one of my late friends who would go to get food at Waffle House eat a big meal & then hide a hundred dollar bill on the table & make it look like he skipped out on the bill. He would then sit in the parking lot & watch how the person would react to first thinking he left without paying only to realize they just received a nice big tip probably biggest in their Waffle House tenure. This story brought a big smile to my face & encompasses what a good gesture can do for someone. Now I am not saying we should all go out & spend a ton of money but what I am saying is we can always be thinking about ways to uplift & help people. God has blessed us all with unbelievable gift of life now we should all start blessing everyone around us. I hope everyone is having a good start to the week & God bless you all.

 

March 2 2013

It's amazing to me to think back before ALS & all of the trivial things in life I would stress about; where to eat, what to wear, what's the best thing to do on a Friday night, what car I had, etc. Now after ALS I was forced to make real life decisions for those of you that know me know that All I wanted was to be a father. I was raised by two great parents & I wanted to give that gift to my own children but soon after being diagnosed; Hope & I realized it would be selfish & unrealistic to have kids. I now have been forced to decide on a feeding tube or not a pace maker or not & soon I will face the decision of whether or not to be put on a ventilator & whether or not having a machine to keep me alive goes against what God wants for me or I want for myself. These are all really tough decisions that now bring me stress not decisions about what shoes to wear & what I drive. I hope people can use me as an example to just live their lives & not stress about the little trivial things in life. Be happy with what you have & live each day to the fullest. I pray that God will continue to bless each & everyone of you with good health, happy families, & prosperity. Have a great weekend & God bless!

 

February 28 2013

One of the hardest decisions for an ALS patient is whether or not to get a feeding tube before its forced upon them. Many wait too long and can be the biggest mistake made. Food is the only way thing that will help us maintain weight, keep energy, & help slow the progression by including enzymes & added nutrients. I am now eat but couldn't eat enough to maintain weight & feel like I was getting enough nutrients. So I went ahead and got my peg tube before I was told I had no choice. It's a very scary thought to have a permanent tube hanging out if my stomach but it has turned out to be one of the best decisions I've made. It has instantly put on much needed lbs to my body & allowed me to consume things I would have never been able to before. Here's an example of one of my shakes: kale, spinach, blueberries, banana, ginger, beets, coconut water, probiotic, apple cider vinegar (got to stay regular when you have ALS), flax seed oil, chia seeds, hemp seed, spirulina, chorella, barley grass, royal jelly new pollen, peanut butter, cocunut oil, cacao, trace mineral drops, almonds, avacado, pineapple, creatine, AAKG, GABA, coq10, isotonix (Hope swears by this), shilajit (volcano ash which has 70 plant based nutrients in it), & a ton of organic natural protein. That is my morning shake I do things different at night & any meal I don't finish we blend up & use throughout the day. Because of the effects of these shakes I'm now able to actually eat more of the foods I want to taste than I ever could before. As far as the tube hanging out of my stomach I want to thank Betsy Bravman Halpern for showing us how to tie it rather than tape it to keep it from hanging down from my shirt & out of the way of my arms. I also want to thank my good friend Joe Colletta for giving us some of these incredible super foods to add to my shakes. I urge any & all ALS patients to go ahead & get your feeding tube it's inevitable & the sooner you do it the sooner you can reap the benefits. Another great aspect I now can take all my medicine through the tube & not worry about having to swallow everything I take. Thanks to my wife Hope Cross Dezember for taking so much time to make me these shakes each day & taking such good care of me have a good day everyone

 

February 18 2013

I know it's been a while since I've been on the book of faces but I have honestly thought I was dying I could no longer speak or move I eat or do anything. The infection I had made me cough every minute of every day for a week straight & all my energy went to coughing & not healing. Without my wife Hope Cross Dezember caring for me & telling me I would get through this I don't know if I would still be here. So thank you to my incredible wife for keeping my spirits lifted & cleaning my gnarly infection & putting so much energy into how to feed me, helping me go to the bathroom (which wasn't fun or easy). I really was scared that it was all over for me but now I am seeing the light (the good one) at the end of the tunnel. There have been a lot of tears shed & time wasted on complaining & I now use it to reinforce my notion of living each day & being thankful for everything we do have. Now I am grateful today I am talking again, eating & moving on my own again. I am very thankful for everyone's support & kind words of encouragement. I love you all. I lost a fellow friend & ALS warrior on valentines day who was my age & diagnosed around the same time. While this was a really hard pill to swallow but I know he is in heaven wanting me to keep on fighting & sending me strength. He was a good guy & will be missed. My stomach now looks like a complex medical experiment I have a tube coming out the left, a plug in outlet on the right side & 4 holes to match. Thanks to my wife for still telling me I'm hit even with a stomach full of holes. :) my overall weight was down to 110 lbs at the worst but I am gaining weight back because of my wife's creative feeding tube concoctions. I now know I will get through this & everyday with my wife by my side. Again thanks for all the support & God bless everyone. Now go live your life! :)

 

January 29 2013

ALS is the hardest thing I've ever gone through & I let it recently take over my emotions & the way I treat the love of my life. I became critical about everything she did for me & lashed out & not be who I truly am. As much as I didn't want ALS, Hope Cross Dezember didn't want me to have it either & certainly didn't sign up to be a caregiver, it just happens that way. It is hard on the both of us but especially had on Hope who has to take are of me, watch me die, & live as normal a life as possible. Although she didn't know this was where she would be she does the best job. I know a lot of us ALS patients take out frustrations out on the ones closest to us & the same for for everyone. People seem to treat the ones they love the worst. We all need to start remembering to live for one another & honor each other the best that we can. I say this on Facebook because people are so great to us on here & support us through thick & thin & I want to honestly say I found my weakness & although life is very hard we (I) should never let our (my) problems hurt our loved ones. If we hurt them too bad or push them away we may never get them back, that would be the biggest loss of my life. Thankfully my wife is incredibly forgiving, patient, understanding, compassionate, & all around Wonder Woman. So I know she will always stick with me through all of this, this makes me the luckiest man alive. I'm hopeful through my honesty to you that everyone will take this to heart & truly treat your loved ones with the care, respect, & love they deserve. God bless every caregiver/spouse out there that sacrifice so much to make life better for ALS patients & well God bless everyone really.

 

January 15 2013

My ALS story: it all began in the summer of 2008 I embarked on a solo journey to Kansas City, MO where I started a new job & career path. I moved myself into an apartment & made a goal that I would get myself into tip top shape so the next night I sat out for a jog around my complex. That is when I noticed my right leg was not moving the way it should, it felt heavy & weak. At that moment I honestly thought nothing of it & attributed the weakness to a compound fracture to my right ankle. For the rest of that year I continued to work out but my leg would not get any stronger. Fast forward to the summer of 2010 I began feeling pain in my right wrist & went to what turned out to be my last round of golf with my dad. I could no longer hit the ball the way I used to be able & almost quit playing half way through the round but I tougher it out. My dad then said I should go get checked out. The orthopedic doctor looked at my arm & said I had an old fracture in my wrist that hasn't healed. He then injected steroid & cortizone shots into my wrist on 3 separate occasions over the course of a few months. Needless to say it never got better. In the spring of 2011 that doctor then sent me to a neurologist where he performed the EMG nerve test on my right arm after the test he said it appeared I had something like lead poisoning. He then wanted to the entire test on my whole body and as painful as my right arm was I said no way for a doctor I thought was a quack. I laughed that off & consulted with my girlfriend at the time & my family & we all agreed that working out & eating right would solve my problems. July 2011 at work I fell while hanging some decorations, that made me nervous but then a few days later I fell again while walking at my office. I immediately made an appointment with a top neurologist recommended to me. He right away said I either have a pinched vertebrae in my spine or ALS. That was the first time I had ever heard of ALS. I immediately did an MRI to see if my vertebrae was messed up but nothing was found. I then went to medical college of Georgia in Augusta & did the nerve test throughout my whole body & a spinal tap after all that there was no other possibility to explain my deterioration other than ALS. I was diagnosed August 10th 2011 & proposed to my now incredibly supportive wife, Hope Cross Dezember August 15th 2011 at our spot by the river (which I am no longer able to visit since being in the wheelchair). We got married October 15th where I could dance with my beautiful wife & walk down the aisle. It was a magical day shared with close family & friends.

 

I deteriorated very quickly after our wedding & Hope & I were very scared that there was no one out there to really help with all the needs we have. That is when we found out about the ALS guardian angels, we were lucky enough to live next to Lisa Jones Wyhlidko who works along side stu. From the first day we met her she has been nothing but a beam of sunshine in a very dark time for us. They have given us a wheel chair, voice amplifier, a dynavox, a lift for the house, & a handicapped accessible van that Hope & I have taken from the east to the west coast to see things & places we've always dreamed of. Lisa has come to our fundraisers & helped inspire the fear the beard pub crawl. We have felt so blessed by the guardian angels & read about the battles other pALS go through. We felt horrible for these people & have used some money raised to give back to other ALS patients who don't have the same support as we do. There is no other organization I have seen that care as much as the guardian angels do. God bless Lisa & Stu for all that they do for this horrible disease & the people effected by it. Thanks for all the hope & help.

 

October 19 2012

I see on here (the book of faces) a lot of people complaining about things they shouldn't. This week I have been in the ER where I had a catheter shoved in my man hood where half way down they found a blockage of scar tissue that they had to shove through all this without any numbing medicine. Then today I go for a check up where the doctor grabs my manhood & a pair of scissors again no medicine (yes) & starts cutting away at my hole. Yes now that I've painted the picture let me make my point. Life is too short to constantly complain about trivial things. I should maybe be home resting & probably even complaining but instead I'm out enjoying my life with my beautiful wife. ALS has given me a new perspective on what's important---I hope to see everyone focus on what good things there are in life & not dwell on the negative. Have a good weekend love the one you have & go live life!

 

Septmeber 25 2012

My wife is amazing & a trooper for watching my entire procedure which is not for the weak or squeamish & also woke up each time I needed to move last night to help me. You all are amazing also---everyone who has thought & prayed for me & my wife & to the countless people who donated to help make stem cell possible. I am in extreme pain but that is easy to deal with knowing what might come. Few short hours after the procedure I was able to take my first full deep breath like I could before ALS! This makes me extremely optimistic! I will gladly recommend this doctor to anyone who wants information. God has a plan & he made sure to put all the right people in my life to keep me going. I love you all---have a great week---keep your heads up! I will continue to update.

 

August 9 2012

Don't take your life for granted. On this day 1 year ago I woke up and prayed to God that what was happening to me would turn out to be HIV or Parkinson's or Lyme's disease. I actually prayed to have aids over my eventual diagnosis of ALS. We are the only people on earth that pray to God to have something like that over Lou Gehrig's. I never thought I would be doing that but my life changed in one 30 minute doctors visit. Life is hard enough and too short to be angry, depressed, & or negative. Cherish each day because each day is a gift.

 

June 1 2012

"If there is one thing I want everyone to learn from me it's that when you are struggling to be happy look at the simple things that God has given you, such as the ability to type, breathe, talk, swallow, etc...kiss your wife/significant other and really think about the simple things you have and be happy about them for they can be taken away in an instant. Live your life to the fullest and never take a day for granted. Just be grateful for the simple things & enjoy the gift of life."

 

December 19 2012

Caregiving is emotionally and physically challenging. It is overwhelming and tiresome. It is done out of love, and nothing else. Hope Cross Dezember you are my Angel, and I Thank You from the bottom of my heart. I Pray we can find a way to calm your mind and soul from the stress I inflict. I love you, and could not do this without you. Thank you so much for your sacrifices

 

October 20 2011

These are my vows to Hope for those of you we were unable to invite.

Hope, You have filled my world with unconditional love and meaning. Thank you for taking me as I am; loving me, and welcoming me into your heart. Your passion, strength, and charisma inspire me every day. You are my Angel; and I promise to fight and do all I can to stay here on earth with you as long as God will allow me.

 

August 15 2011

Thanks to everyone who has reached out to congratulate me and Hope Cross. We are very excited to start our lives together. Life does not stop with a horrible diagnosis!! I am back working today, and will do so as long as I can :) Thanks again for the well wishes, and as always, your Prayers!! It is amazing how much love is displayed on my wall. I feel so very blessed to have been a part of each and everyone of your lives. Love the ones your with each day, and have a fantastic week!