Vets with attitude

The Big He and I had the amazing opportunity to participate in a video series about Veterans with ALS. The Pharmaceutical company, Mitsubishi Tanabe Pharma America, has taken an active role in providing educational assistance to people living with ALS and their caregivers. They have also stepped up to fill what I consider a void on the awareness side regarding veterans living with ALS. We are so very excited that this sub-group of people living with ALS has been given a bigger voice. Thank you MT Pharma America.

 

Mitsubishi Tanabe Pharma America, Inc. (Nov 9, 2018) in Facebook. Retrieved Nov 29, 2018 from https://www.facebook.com/MitsubishiTanabePharmaAmerica/

Another side of ALS

As my friend, do you mind if we sit and talk. Okay, do you mind if I just talk. 20181113_1825073581141899260348643.jpgLife has been kind of upside down lately and I just need to talk…Do you need to grab a drink? I know I do.

Gosh, where do I start? There is this whole other side of ALS that if you are not close to someone and this disease, you really don’t know. The fight against ALS is more than the Facebook posts about donating to the cause, taking bucket list trips or even ALS Month. The real fight against this disease starts when the front door closes. It starts in the home of the family dealing with this disease on a daily basis. The weapons used depend on where you are in the progression of this disease and even with the right weapon there is no guarantee the outcome of the battle.

The progression we are seeing is taking the Big He from moderate independence to more dependence on others. He actually requires someone to be with him at all times now. For him this means he has given up privacy. He now needs help with everyday tasks we take for granted like the morning routine which the Big He refers to as its time to Sh!t, Shower, and Shave. He also needs help with putting on his breathing mask, turning on his Bipap and even transferring from his wheelchair to the bed. We are not a well oiled machine at this time. Which means tempers and frustrations run high on both sides. There are many angry words followed later by the apologies and kisses. Something that has been hard for me to adjust to is the lack of independence that ALS has had on  me the primary caregiver. I have become the Big He’s arms, legs and voice. Although, I have been talking for the Big He for 28 years so that’s not really a huge change. What is a change is trying to figure out what he is saying. His voice has changed and it’s hard to understand him sometimes. That frustrates the both of us. It makes me sad. I miss hearing his voice. I miss just hanging out and talking. Talking takes a tremendous amount of energy so he conserves it when he can. We now sit in comfortable silence.

For the past month or so I have felt like I am in crisis mode. The Big He had such problems with his breathing for several weeks that we had to figure out, the change in his strength and need for help when standing or transferring as well as just trying to figure out the other areas that we are seeing progression. I have not had a chance to work like I would like. I like what I do professionally and it has been my escape. As the Big He requires more help, my professional life has suffered. We recently hired our caregiver full time but I am learning this disease takes a village and while she is so helpful there are some things that the Big He feels more comfortable with me taking care of things. We know the loss of his personal privacy is coming and he will need other people to care for him for now he is just not there. This means my husband comes before career. While my heart knows this my head still has a hard time giving this part of my life up. I try to be hopeful but let’s be honest, this disease has no cure. I am still young and will need to work after the beast wins. This is just another side of ALS that absolutely sucks to think about much less talk about but is the reality of what is happening.

Another side of this disease is the impact it is having on the Little He. We cannot protect him from what is happening and what is coming. We are dealing with poor grades, lack of attention at school. While the mama in me gets super frustrated with his grades, I can’t help but be so incredibly proud of the man he is becoming. Tonight, the Big He took a drink and started to choke. Like scary choking. The Little He was studying and with a quick yell of his name and I am guessing look on my face, he knew what was happening and what needed to be done. He jumped up and had the suction machine going and cough assist turned on waiting for his Dad and I to get to it. He may not be able to remember to turn his damn homework in but he sure remembers how to use the necessary medical equipment his Dad needs. The Little He stayed next to his dad even after things were okay for the next 20-30 minutes.

This is what ALS looks like when the door closes at night. A 16 year old boy gets pulled from homework to handle emergency situations and care for his Dad. A wife helps her husband and ensures that all those things that he can no longer do himself are getting done. An incredible man that had an amazing career working for the State of Texas, a Veteran of the US Air Force, a man that was fiercely protective of his wife and child now needs help to do simple things that many take for granted.

There is something else I want to share with you about what happens when the door closes at night. The amazing love and strength that our family has as we battle this disease. The fact that while ALS has taken our dreams for the future we have adapted and created new dreams to achieve while we can.

I don’t know about you but my drink is empty. This caregiver doesn’t get to have seconds. I have a husband to care for and need to follow up with the boy to make sure he got his homework done. I can’t thank you enough for letting me just talk but I need to walk you to the door. Please say a prayer  for strength not just for my family but the other families that are fighting this disease as the door closes tonight.

 

All my love,

The She.

ALS-The ride

This week can best be described as a roller coaster ride. There were highs, lows,

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Photo by Pixabay on Pexels.com

fast turns and moments we lost our breath. For several weeks now, the Big He has been having some increased problems with breathing. Last Sunday, he had serious problems and nothing we did helped. So, we called 911. Yep, ALS has progressed to the point that we needed emergency help. Fire Department and an ambulance parked in front of our home. The Little He, kept his wits about him and alerted our neighbor we would need him to drive our car with the wheelchair to the hospital later. He stayed with the animals, he was scared but what kid wouldn’t be. We spent about four hours in the ER Sunday before being discharged. No infection. Blood work came back good. X-ray did not show any issues. So what was wrong…ALS. For the Big He, he has experienced quite a bit of progression in his breathing. He is still somewhat mobile, he still eats on his own, he can still talk but he finds it hard to breath. We had his RT visit us on Monday and make changes to his ventilator settings. Later in the week we finally were able to meet with our VA Pulmonolgist.  He had more blood work but this was to specifically check his blood gasses. Those looked great but it was because he was on his Bipap for the blood draw. So again, what was wrong…again it’s ALS. The Big He is experiencing “air hunger”. For those with asthma, you know this feeling. While I have never experienced it, watching my husband go through with this was incredibly hard. My heart ached for him. Watching someone you love so much go through this is at times-well it is something I don’t wish on anyone. He is doing much better today. We are keeping a close eye on him. Needless to say, it was a long week.

This is ALS. It is a roller coaster ride for sure. This ride will continue and I know the drop off’s will be steeper and go much lower than we want. If I could have one wish, my wish would be the ride ends with a cure. Something to stop the progression, something that will give the Big He his life and his body back. Something that will give so many families their loved one’s back to the life before the disease. ALS is ugly. ALS is cruel.

We are one week away from participating in our third ALS Walk in Austin, TX. We walk for the Big He and for all those wonderful, amazing folks that fight this disease every second of every day.

If you can help, we ask that you do. Little donations add up to help make big discoveries. You can donate to our walk benefiting the ALSA of Texas

All my love,

The She

Storm is coming…

This phrase, Storm is coming, in my family is actually my Daddy’s way of getting rid of all the kids. Even when the sky is absent of any clouds, when we hear Storm is coming, we start packing up to head home.

Tonight, that phrase popped into my head but for a completely different reason. That reason, Alpha Lima Sierra. Tonight, we are in Houston because The Big He has ALS clinic tomorrow. For those not in the ALS know, Clinic is an all day event. You meet with a Neurologist, Pulmonologist, Respiratory Therapy, Physical Therapy, Occupational Therapy, Nutrition, the wheelchair vendor, and various others that do research into this disease. For many, going to clinic means hearing how much you have progressed. There is no rehabilitation for this disease. Most pray for a plateau in their progression but for many this doesn’t happen.

The storm I see heading our way is progression. Some progression is like a breeze, you feel it but there is not much to see. The storm of progression that is approaching us will change things, will leave a path of tears and fears in its wake. The Big He is getting weaker. His ability to breath on his own is becoming harder. He is losing his ability to do those things we take for granted like standing up, eating dinner, showering, and talking. Tonight, we had to quickly figure out the transfer from wheelchair to shower seat. Unfortunately I was not able to get a room with a roll in shower. We got an accessible room with a tub and bench. The difference is HUGE when it comes down to taking a shower. He was frustrated with me, I was scared that I might drop him when I helped him get up…in a split second I was running the “what if’s” in my head and what I would nedd to do if he fell. All is fine now. He is in bed, mask on and trying to get some sleep. The drive, dinner and shower exhausted him. That’s ALS. Tonight, I felt the fear and anxiety of this upcoming storm. This next change in the progression will be drastic. It will be a huge shift for the Big He, for the whole family. He will become more dependent on others.

I hate this disease. Nothing is holding back this storm. We must just watch. We are helpless when it comes to the progression. We know all we can do is try and stand as strong as possible to withstand this storm. We also know the calm will also come. We will adjust to the changes that come. We will get back to a routine…until the next storm.

A storm is coming. I can feel and see it. Our faith and love will keep us strong.

All my love,

The She

Walking and Rolling

Hey there. This is Lou as in Lou the service dog. I was made Team Captain of this years ALS Walk in Austin, TX. Why would The She put me as Team Captain of Tom’s Troops, well it just so happens I raised a lot of bones (that’s money for you hoomans) last year.

I want to reach out to all the pets out there (dogs, cats, birds, lizards, fish, you know who you are) and ask for a $20 donation from you. If you feel the love and want to donate more, that would be great! If your hoomans want to donate even better. I would also love it if  you would register to be a walker. Just know that I lead the way (I am the designated line leader). You can register as a walker or donate here. You can also register as a walker and not even walk, you would be a virtual walker.

So why do I walk, well first its what dogs do. Second and actually way more importantly, I am doing it for my person and very best friend, The He. I love him and want him to be my family for a very long time. So walking let’s me do my part to help bring awareness to this horrible, terminal disease. One that I might add has no cure or management to prolong life beyond a few months.

If you want to keep up with me, I have my own Instagram page. Yep, I am getting kinda famous. I mean, I do have the looks and the talent. Check me out on Instagram @lou_the_mobility_dog

See you soon,

Lou Gehrig Garey (The service dog)

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28 years!

Today, 28 years ago, on an island in the western pacific ocean, the Big He and I tied the knot! Our own family did not know until afterwards. We eloped. I am not sure we even thought about our distant future, who does at 20 and 21 yrs old. All we knew was that we were in love. Our motto was “we have each other”. It still is but now we have our son and we still live by “we have each other”.

We have seen and experienced many things. Together we have experienced our  highest high’s and lowest low’s. 28 years ago, we never in a million years thought that our dream of growing old together would be redefined. ALS has required us to adjust and redefine our marriage and our roles. That is all ALS will do regarding us.

As I sit here I can say without a shadow of doubt that I am so very lucky to have been married for 28 years to the Big He. My heart wants so many more years as 28 just doesn’t seem long enough.

To the Big He:

You came into my life when I was not expecting it. You are everything I never even knew I wanted in a partner. You let me be me and I love you so very much for that. It is cliche I know, but we really were made for each other. From the very beginning of “us” we just knew. We knew we would be together. We knew despite the obstacles of having a long distance relationship, we would be together. I would not change one things about our life together. The journey to this point is what makes us work despite the disease. Yes, it is hard but we just know, we will be together and continue to live on love because, we have each other.

Happy Anniversary Love.

 

Traveling in ALStyle-Part 1

The family just completed a week long trip to Oahu. When I say family, it was the extended family by choice. A total of 7 people; 4 adults and 3 kids (15, 14 and 10), This would be the first trip with this family in a few years and their first trip traveling in ALS-Style or ALStyle. What is ALStyle travel? I am sure it differs from PAL to PAL and according to their progression and travel experience. For us, it means, well let’s be honest, it means a shit-show. A shit show to Hawaii, how can that be? Well sit down and let me tell you about it…

The trip began in the early morning of July 1. As the sun was still several hours from coming up a Super Shuttle approached to take us to the airport. Instead of a wheelchair accessible van com

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ing to get us, it was JUST a van. Me being the problem solver that I am, I called my sister from another mister (the family by choice I mentioned) and told her to get her butt to my house ’cause we wouldn’t have room for Frank the Tank AND all the luggage. Within minutes her and the rest of the family showed and we began loading Frank in our truck and the big suitcases in her vehicle. We actually only took two suitcases for the Big He, Little He and myself which was great however, in addition to the two suitcases with our Aloha garb, we had a suitcase for medical supplies/equipment, backpack camera bag, cough assist, two ventilators, my beautiful Consuela bag which was my carry-on holding medication, extra circuits for the Trilogy, extra batteries for the Trilogy, chargers, transport wheelchair and snacks. Did I mention my beautiful Consuela bag????Gotta have the snacks. The Big He can get hangry at times.

At the airport it was at times, the blind leading the blind. Get tickets, inform the ticket people we have the wheelchair, explain to the ticket people why it is easier on everyone to have ground-crew take the big wheelchair at the gate as opposed to at the ticket counter and then it’s TSA time. Take all the carry-on equipment out, take the snacks out, explain that the equipment can go, watch the look TSA Agents give when looking at Frank, get the Big He’s shoes off, and identify to TSA the Big He doesn’t talk much. All the while trying to count the bags to ensure you are receiving what you put on the conveyor to be screened is coming back out which didn’t happen and keep an eye on the Big He. Had 2 bags pulled to be checked. I forgot a few granola bars in one of them and actually got lazy and didn’t unpack one of the ventilators. My bad! The Big He gets a thorough pat down and I walked away wondering why he had such a big smile on his face. Oh well, it is Austin and we like to keep it weird here. We made it through and it was not as bad as it sounds,okay it was, but having extra arms and eyes helped out big time.

Once through security, we made our way to the gate to meet the ground crew so they could take Frank and get him ready to load up. We take pictures of what we give them, show them the tools we brought (yes, I said tool) and ask 4 or 5 times if they have tagged the chair to get to Oahu since we were not flying direct. When they took Frank, this is where the transport chair came in handy, well besides being able to use it as sort of a pack mule earlier that morning. We had the Big He transfer to the transport chair which is what we used to get him to the plane. Now, since the Big He can no longer walk unassisted, one of the traveling in ALStyle perks is that he needs to board early (and the rest of the travel party gets to go too). Like not just pre-board, but pre, pre-board. He now gets to use one of those little aisle chairs to board. You know the ones…skinny, metal, 5 point harness

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and not at all comfortable. While they strap him in, we watch, make inappropriate jokes that may have include phrases from Silence of the Lambs. Once we are settled on the plane-which means ordering a little vacation drink, everybody else loads up and after our pre-flight check we are up, up and away.

I have to admit, the airline (Delta) was really great. Everyone we encountered was very accommodating and had big smiles. Some of those smiles could have been because when me and my sister from another mister get together we have fun and laugh about everything! And to let you in on a little insider tip to traveling to Hawaii, before you board the final leg of that flight, having a costume change to put on your Lei’s and island wear is a must. It gets you in the mood and makes drinking mai tai’s on the plane way more fun!

I will post more about the trip in the upcoming days.

Aloha and all my love,

The She.

Quiet Time

The month of May was not just busy but stressful, overwhelming, exciting and fulfilling. There was infusions, veterans events to attend, doctor’s appointments, ALSA Advocacy Conference in DC, advocating for people with ALS, advocating for veterans with ALS, news article, the oven went out, the A/C went out, the dishwasher died and the old yellow lab had surgery. There were days we absolutely lost our shit and days we laughed.  The Big He is progressing and needing more assistance in most things. The Little He is winding down in school. I am working full time out of the house and have had several large projects I am helping out with.

Some days there is little time to catch my breath. Some days I spend the last few waking moments trying to turn my brain off so I can sleep or if I pass out due to exhaustion and wake up, my mind goes to those places I don’t want it to go. It refuses to quiet down.  I have been trying to figure out what I can do.

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Something I can leave if the Big He calls. Something that is for me. Something that allows me to just sit and not think too hard. To sit and have the Big He just a few feet away. That something is puzzles. I am on my 4th since the first of May. I am finding they allow me to have quiet time. Just me and 1000 pieces. I usually sort them by color. There are piles that I know where they go and those that I have no idea. That’s because they don’t offer a clear clue to where they go in the puzzle. I started to think about how that is so like life. I think that Forest’s mom got it wrong, life is not like a box of chocolates but more like a puzzle. Sometimes we can see clearly how the pieces go because there is order to them like the boarder pieces or when there is distinct color pattern. We can make the pieces fit. Some more easily than others just like when things are going good. Then there are times when its crazy and chaotic like when you first dump the puzzles out. That’s what the ALS diagnosis was like but we had no clue to what the puzzle is and we still don’t. There are times when we can see past the chaos and see exactly where a piece will go. Most of the time I am sitting and staring at that pile of pieces that I have no clue what to do with. Then maybe me or someone else will walk by and see it from a different angle and be able to place a piece.

While in DC, we met with another veteran with ALS and his wife along with the wife of a marine with ALS. We also met with a veteran not familiar with ALS. All of us just talked about this new life and the struggles that we have or we will face as the disease progresses. From that conversation advocacy opportunities have  presented themselves. The Big He and I were able to tell our story to a larger audience. From that opportunity we were able to connect with other veterans with ALS. These advocacy opportunities are just another piece to this puzzle that is our life now.  I have no clue what the big picture to this will be but for now, I will just sit quietly and work on the puzzle.

“God’s will is like a jigsaw puzzle, sooner or later, all the pieces will fit together.”
― Danny L. Deaubé

 

All my love,

The She

 

The Big He’s update:   The Big He was exhausted by the time the DC trip was over. It took him a good 3-4 days of resting to not feel so wiped out. He did have fun and being able to share the experience with the Little He was another memory made. We were proud of our son who attended the meetings on the Hill to talk with our elected officials.

The Big He’s voice is still getting weak and understanding him is harder.  He needs more help with simple tasks but that is ALS.  He continues to keep a positive attitude and tackles each day head on.

That Something

Two years. That’s how long we have been living an ALS Life. Never in a million years did I imagine that a horrible, terminal disease would find its way to my family. After all, haven’t the Big He and I been through enough with the loss of the babies and the Little He’s early arrival. There are no passes or limits to the burdens we have here on Earth. In the two years since the diagnosis, I have often wondered how in the hell do you experience this level of devastation and not go bat $hit crazy. What is that something that some people seem to have to help them walk through the Valley.

The Big He and I have managed most of our difficult situations through the liberal use of inappropriate humor. Like, REALLY INAPPROPRIATE humor. Even some of the saltiest veterans have cringed at some of the things that have come out of our mouths.  I have had people around us tell us how strong we are. I am not sure that strong is the right word. 

I think a better word for those folks that seem to weather the storms better than others is RESILIENT.  Resilience is not something you are born with it is something that can be learned. It is a skill you develop. It is the capacity to cope with stress and adversity. I look at my past and I can think of people in my life that have shown me what this means. I have learned from them. I have also found a group of people (our battle buddies) that should have their pictures in the dictionary next to the word resilient. Since the Big He’s diagnosis I have connected with a group of caregivers who are the wives, husbands, sister’s and brothers, mother’s and father’s to veterans. Not just veterans with ALS, but yes there are some, but caregivers to disabled veterans with wounds both visible and not visible. Veterans who have had catastrophic injuries in recent wars and those veterans that have dealt with cancer, strokes and other devastating illnesses. This is a subgroup of caregivers in America today. The amazing, resilient people are every age. They are men and women who do remarkable things. It is these people, the caregiver’s to veterans, that I now look to for guidance as well as look at in awe regarding living the life that chose us as resilient. So how do they do it? Their resilience comes not from staying strong every minute of every day. No, it comes from experiencing the difficult and trying times. It comes from being vulnerable and wondering if you are doing everything you can. It builds even while you are soaking in a tub with a bath bomb, crying and wonder WTH. But these amazing people don’t live in the difficult or vulnerable experiences. They move on. They recover and get back to the job at hand. Ok, they also have very inappropriate and twisted sense of humor, but that’s probably what drew me to them in the first place because their coping mechanism was the same as mine and the Big He’s.  

As we move deeper into the progression of Alpha Lima Sierra,  both the Big He and I will need to hone our resilience skill. I know that when we get down, we can count on our battle buddies to let us have our moment but then tell us to dry our tears and get our butt’s up and get back to business.   

TOUGHNESS IS IN THE SOUL AND SPIRIT, NOT IN MUSCLES  -Alex Carras 

All my love,

The She

 

The Big He’s update: He is still receiving the infusions of Radicava. Are they helping, not sure but we can say they are not hurting. The Big He is still going strong and fighting this damn disease every step of the way, even if his ability to take steps on his own are coming to an end. He is a fighter. He is RESILIENT.

Reality

There are times when the Big He and I are just hanging out and talking I forget about ALS. There are times when I wake up and think, what the hell…is this really happening?.  It’s a new year and as people move forward embracing the future, I want to stop time. I don’t want to move forward. I don’t want to embrace the future. The future is scary. The future will only bring progression.  Only those that are on  or have been on an ALS journey get it. I see friends and family go about their day, dealing with the mundane things that we must do and I get mad. Probably a little jealous too. I am mad this happened to us. I am jealous those around me are truly  unaware of what ALS is and what it does. To be blissfully ignorant again.  I think, if only we had to deal getting up and going to work or getting your kid to school or practice. But that is not an ALS life. The reality of living an ALS life for the most part sucks. Yes, there many things I am able to appreciate more because of this life but the disease, sucks. From the outside looking in most people may think we are doing a good job. I have heard folks say they just don’t know how we do it. Well, I can tell you I don’t know how we do it either.  Living an ALS life is living in a constant state of grief. There is actually a name for it, anticipatory grief. As your PAL loses function, you grieve. You grieve the impending loss of another function. It kills me to see the Big He having to go through this. I want to take it away but again, the reality is I can’t.

The reality is we have to get up everyday and live an ALS life. For those of you who do not live this life, be grateful. Count your blessings that you do not know this disease.

Yes, I am aware this is not the most uplifting post, it was not supposed to be. It reflects what I am feeling right now. Fear. Frustration. Its the reality of this life. Good days. Bad days. Days you just want to yell WTF!!!  Maybe tomorrow will be good.

All my love,

The She

About the He. Well, he is progressing. He is no longer driving. His voice…it has changed. He still can talk in his natural voice but now it has the ALS slur. He needs a little bit more help with breathing during the day now. ALS Sucks!