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!

 

 

 

 

Reflecting

20180101_104357Happy New Year! We all made it through 2017…ALS can go suck it!

While there is progression, the Big He is still walking (very short distances), talking (kinda getting that drunk ALS accent) but despite it all he is going strong.

I have had a draft going for a day now, I write and I delete.  You know what, the biggest thing I can say about 2017 is WE SURVIVED YEAR 2 of the monster  disease known as ALS! So again, ALS, you. can. suck. it!

We survived progression. We survived traveling with a disability. We survived reduced ability to walk and to breath.  We survived the VA. We survived 2 surgeries, We survived figuring this new life despite wanting to scream and yell and hide from this new reality…ok, maybe thats more me then then the He’s. They survived me. I survived them.

Look out 2018, look out ALS, we are hitting our stride and will hit this new year and new life like survivors!

All my love,

The She

 

 

 

Traditions

I don’t know about you, but this time of year I start getting nostalgic. Rem20171217_192256embering past Thanksgivings and Christmas Holidays. The things you did, the feelings, the sense of pure joy. I remember a Barbie multi story home that my sister and I received when gosh, I must have been 8 or 9. I remember the excitement of coming down the stairs with her and seeing it Christmas morning. I wish we could get that back, the pure excitement of seeing what Santa had brought. The no concern for anything except when would I be able to play with it. The feeling of being safe, being happy, not just knowing I was loved but feeling loved. There was such innocence back then. I think that is why this time of year, we try and re-create those  traditions, trying to get back if only for a few days those feelings. For me, Christmas is not Christmas without pecan sandies or hot chocolate with peppermint. Last year, I will be honest, I don’t really remember Christmas much less Thanksgiving. I do however remember our trip. Ahhh who could forget that paradise.

This  year I have tried to be more present and make sure we continue with the traditions the Big He and I have created together over the past 27 years. To make sure the Big He, Little He and I have that feeling of joy and love a time before Alpha Lima Sierra.  It’s hard I will admit. While trying to keep traditions there is the ever present Alpha Lima Sierra. Not knowing how many more Christmases we have as a family brings a lot of mixed feelings. While I want to keep our traditions going, I know in the future those traditions will bring sadness knowing that the Big He is not there to share.

We have for pretty much our married life done white lights on our tree. I love the look however this year we went and got a new pre-lit tree. The amazing thing about tree’s these days, they come with LED lights that you can switch from white to colored. I have noticed that I am preferring the colored lights. Changing it  up has been nice. Just like with Thanksgiving, we did a cruise instead of the big family gathering with turkey, dressing and the other sides. Part of me thinks 20171217_192227changing things up might help me get through the holidays when its just the little he and I. The other part knows that there is nothing I can do that will make this time of year easy.

Changing it up, keeping the tree set to colored lights could also be me trying to get that feeling from when I was little. That is what we had…a big beautiful tree, full of ornaments, with bright colored lights. I guess I am searching for that innocence from my childhood. Trying, just for a moment to remember that feeling of pure joy and of feeling safe.

My Christmas wish for my family and yours, if only for a moment, is to feel love, peace and pure joy. Let the stress of life take a back seat and just enjoy being with family and friends. And if this year you are missing a loved one, I pray your heart remembers the joy and love you shared with them and you find the comfort you need to make it through.

We wish you a very Merry  Christmas. God Bless you and your family.

The She

 

ABC’s of Fall 2017

Yeah, Yeah, Yeah I know it’s been awhile. September – November have seemed to fly by. I mean we are only a few days till December. Seriously?  I don’t like it one bit. I want to hold on to every minute but they just slip out of my hands as fast as I catch them. Our time lately has been filled with Advocacy, Being Grateful, and Cruising for a little get-a-away.

Advocacy

Being handed a crappy situation can either make you go inward to deal with things in your own way and on your own time or makes you so damn mad you push things outward, kicking and screaming for someone to hear you. Guess which way we went…

Advocacy means so many things. For us, we are constantly advocating for the Big He and other disabled veterans with ALS with regard to the VA for services and equipment. Recently we were denied a program that would place someone in our home to help the Big He with making lunch and being there when he eats due to choking concerns. With one program, the VA did not even submit a referral for a particular homemaker/caregiver program. Keep in mind, I am lumping these scenarios as “The VA” but in truth, it is the individuals we are working with. For the most part, once you get to a decision-making level, individuals seem to make better decisions regarding how to handle situations. One of the most frustrating part with working with some at the VA is the inability to identify solutions be it other programs or even suggesting taking it to management to get their input.  I have heard some refer to this as the difference between old VA and new VA. It’s a culture of status quo or a “that’s not my job” attitude. At a time when the VA is getting hammered for so many things, you would think that management would be encouraging solution oriented approaches. I have also observed that the old VA approach to things is intimidation with requests. Questioning some at the VA regarding how decisions are made are not met kindly. Lucky for us, the Big He and I have both been government employee’s and that way of thinking does not phase us. We clearly understand the hierarchy in government offices and how to get resolution to our problems. We also understand that most of the time you need to take a bottom up approach but there are those times that dictate a top down approach. Needless to say getting denied did not go over very well with me especially when the VA uses portions of their policy to deny us but leave out the portions that would apply. I am happy to report that after a meeting with decision making individuals at our VA, there was a solution to our problem and the Big He will be getting someone to help him with lunch time routine to begin with.

Advocacy for us has also has been raising awareness for Alpha Lima Sierra. We do this constantly. There are many people that are unaware of what ALS really is or that there is a veteran connection.  In early November, we took part in our 2nd ALS Association Walk. We had a great time and had about 20 walkers with us. Even our new family addition, Lou, got in on the advocacy by raising money for the cause. He did great and raised over $1000.00

Being Grateful

I will be honest, at times it’s hard to see things through the eyes of gratitude. We are so consumed with this ALS life that taking a step back is hard. I try every night to be thankful for my many blessings. This includes trying to find something to be thankful for in an ALS world. I am grateful that we are meeting so many amazing people in this journey. I am grateful that the Big He can still talk and say “I love you” as well as he can still walk (short distances). I am very grateful we have someone in our life now that is helping us. She will be the Big He’s caregiver while I am at work.

Cruising

We did a Thanksgiving Cruise with the Big He’s Dad, Stepmom, Sisters, the one Brother-in-law and their kids. We have done several cruises but this one the Big He was more limited to what he could do. It was hard for me to see this and I can only imagine what it was like for him. We had a great time but it did open our eyes to limitations that disabled people deal with daily. Traveling takes a lot more thought then it once did. We figured things out and had people to help along the way. There were new friends that would help secure an empty elevator for us, or move people out of the way so Frank the Tank could get through. Yes, we took the tank wheelchair and it was a hit. That alone helped us do some advocating for The Independence Fund and Carlson Mobility and how they help disabled veterans of all era’s. There was also the chance to bring up ALS and its impact. If we educated one person or made them more aware, that makes me happy, that is another thing to be grateful for; being able to communicate to others what ALS is and what it does to people and their loved ones.

I think that pretty much covers what we have been up to lately.

All my love,

The She

The Big He’s update: He is about to start his 4th cycle of Edarvone which was shown to slow the progression by 30%. Can we see a difference? Not really. ALS does not progress in a linear way. It can be fast, slow or even pause for a bit, but it’s always moving forward, always progressing. The Big He’s speech is really starting to be impacted. While he can still talk, he does get tired and you can detect some slurring. He is still eating like a champ and not needing his feeding tube/button. Walking poops him out so it’s a common thing now for him to be in his chair when we are out and about. Please continue to keep him in your prayers and that this disease halts long enough for us to see a cure in the Big He’s lifetime.