I have always hated roller coasters, I have anxiety waiting in line...all the terrible possibilities of the bad that could happen, I have anxiety when I get on and the safety bar is pulled down on my chest, I have anxiety going up that first long hill with the click, click, click sound and when I am finally at the top I have a moment of panic before the sudden drop starts...then relief; the rest of the ride is fine, relaxed and thrilling. I am brave and I know I will survive it, but I do not find it fun...I ride only when I have to with Sophia when she is begging to ride with Mommy. Sophia loves roller coasters and any kind of thrill, she thinks thrill is fun. ALS is like a roller coaster. It is a disease of unknowns, it plays with your emotions, and it gives you anxiety with the click, click, click and then panic before the sudden drop. The past couple weeks I feel like we have been on a non-stop roller coaster and I do not think it is fun.
Perspective, it's hard to keep with ALS. When you only have progression to look forward to it's hard for the person living with this disease to stay in good spirits, it is also hard for the caregiver watching on to keep everyone in the positive, it is constant work and it is tiring. The swirl of life keeps going and ALS is like a leech, it sticks hard for it's own gain; however, leeches can save lives too so as hard as it is and as slimy as ALS is, it is possible to look for some good, although the past few weeks I was in need of a little help to find it.
Progression happens; we know it is going to, that doesn't change the disappointment of it when it does. Being involved in a trial doesn't make it any easier, no one can tell you if the medication is helping, or hurting or doing nothing at all, and as our doctor pointed out it would be counterfactual to speculate on any of it. And then there is that darn perspective. In ALS they measure your progression with a score. The ALSFRS or ALS Functional Rating Scale, it is basically a series of questions about daily activities and how much help a patient needs with them, and about specific symptoms, it is a way to see the progression of the disease. In our experience that score can remain stable and a person can still be getting worse. For example speech...is it normal, detectable disturbance, intelligible with repeating, speech combined with nonvocal communication or loss of useful speech. Well you could stay in that detectable disturbance stage for a while, that is Bert...he doesn't need to repeat and he is understood, but it is more detectable than 6 months ago. The same goes for handwriting, cutting food, dressing and hygiene, walking and so on. And for Bert who is an exerciser other decreases are obvious to him but not as obvious on the ALSFRS. So on paper one might seem stable but in real life the person feels the progression. Progression = a roller coaster ride and I do not like one bit! Also, as life keeps going there are the normal ups and downs that happen to all of us, but when ALS is attached to you the thought is always is this the disease or is this normal?
So, we have been feeling the progression of ALS, mostly with Bert's walking and spasticity but also with weakness as well. For us this disease has been slow I guess, it's one of those things I think you can never really compare one person with ALS to the next because everyone is so different and really progression is progression and all the symptoms are bad...it's just what you can tolerate or what each person views as one symptom being better than another and that really depends on each individual. For Bert, he likes to be active or as active as possible having a disease that takes your muscles and movement and all the while knowing that the only activity eventually will be with the help of a caregiver. Either way this decline has put up another hurdle and challenged our spirits and positivity. With this hurdle also came a sad time in our lives when we had to put our dog Bailey to sleep. Bert and I got him shortly after we were married; he lived a long happy life with us. He was Bert's dog...you know how pets just take to a certain person in the family, well Bailey loved Bert, they hiked together, ran together, mountain biked together, he was always at Bert's side, when Bailey did something bad you would hear me say "take care of YOUR dog"...as if he was not mine when he was naughty:) We are sad, we miss him and Bert hurts the most. Bailey understood Bert and he understood Bailey...they had a bond and when you are already dealing with ALS it is that much more heart breaking and it feels like nothing is going right.
We were also a little grumpy about our vacation coming up to the Outer Banks...we didn't really talk about it but we were both wondering if it was going to be worth it...I had checked into renting a beach wheelchair, good idea except that it was going to cost $400 for a two week rental and I wasn't sure I could even navigate the darn thing or talk Bert into sitting in it. I ended up texting our best friends who will be with us on vacation, and thankfully they saved the day. The phone rang after the text, my friend said don't worry they would bring their jeep and thankfully in OBX you can drive on the beach...so no worries he said we will drive Bert out to the beach and skip the huge and expensive beach wheelchair. He gave me a little pep talk and made me laugh, by the time I hung up with him I was feeling positive that we would have fun like always and that ALS was not going to mess up the vacation, I knew my friends would make it ok, Bert heard me talking on the phone and his mood perked up after as well.
Yesterday, I had my first meltdown in a while, I called my sister and cried, I cried about how I don't like this disease, and how confusing it is with all the what if's, how no one can give you any answers to anything, how I just wish that it didn't happen for us or anyone else in this world. I don't like to see my husband upset or hurt, and there is nothing I can do to take this away! I don't like that there are no answers and I don't like the decisions that have to be made. My sister who is calm and in control listened and then gave me the support and advice I needed to find the positive. It was hard to find a positive this time but I am proud of myself for reaching out and allowing the people who I love and who love us to help me find the positive.
So, what is the positive you ask? Friends. Family. The people who love us. They are the positive. ALS sucks, but the bigger the army you have behind you fighting it the better! Our BFFs from Florida always make everything better, when we are with them it feels "normal" and we can truly relax. Our family is our front line they are there to listen, to help clean, to run kids, mow, fix cars, help get handicap vans, hold hands, cheerlead, cook, manage fb pages, manage our diets, help us orgnaize:), love and really everything else. Our friends in our community are part of the army too...they help with mulch and yard work, they give wagons for soccer tournaments, they carry chairs and bags and find us good parking spots, they bring me coffee and support Bert at soccer practice and help both physically and mentally, they run kids too and are just there at the right time when we need them. Strangers from fb who answer my questions or send out their virtual support and prayers are there for us. Our doctors and clinic are there for us. I have been a needy caregiver with lots of questions and I have never been made to feel like a nuisance.
The positive is our army. The love, hope, and prayers that all the people who love and care about us provide. I am grateful for our army, I feel empowered and energized. So, we are going to push on, we will always find the positive, we will go to our appointment on Tuesday at UMass and face our fears, we will find a way around what is lost and move on to something new. I will work hard to keep perspective and be the positive light for my family. I will ride this roller coaster and I will learn to raise my arms high and learn to love the thrill...or at least tolerate it.
"I get by with a little help from my friends"
~John Lennon
xoxo Jennifer
Perspective, it's hard to keep with ALS. When you only have progression to look forward to it's hard for the person living with this disease to stay in good spirits, it is also hard for the caregiver watching on to keep everyone in the positive, it is constant work and it is tiring. The swirl of life keeps going and ALS is like a leech, it sticks hard for it's own gain; however, leeches can save lives too so as hard as it is and as slimy as ALS is, it is possible to look for some good, although the past few weeks I was in need of a little help to find it.
Progression happens; we know it is going to, that doesn't change the disappointment of it when it does. Being involved in a trial doesn't make it any easier, no one can tell you if the medication is helping, or hurting or doing nothing at all, and as our doctor pointed out it would be counterfactual to speculate on any of it. And then there is that darn perspective. In ALS they measure your progression with a score. The ALSFRS or ALS Functional Rating Scale, it is basically a series of questions about daily activities and how much help a patient needs with them, and about specific symptoms, it is a way to see the progression of the disease. In our experience that score can remain stable and a person can still be getting worse. For example speech...is it normal, detectable disturbance, intelligible with repeating, speech combined with nonvocal communication or loss of useful speech. Well you could stay in that detectable disturbance stage for a while, that is Bert...he doesn't need to repeat and he is understood, but it is more detectable than 6 months ago. The same goes for handwriting, cutting food, dressing and hygiene, walking and so on. And for Bert who is an exerciser other decreases are obvious to him but not as obvious on the ALSFRS. So on paper one might seem stable but in real life the person feels the progression. Progression = a roller coaster ride and I do not like one bit! Also, as life keeps going there are the normal ups and downs that happen to all of us, but when ALS is attached to you the thought is always is this the disease or is this normal?
So, we have been feeling the progression of ALS, mostly with Bert's walking and spasticity but also with weakness as well. For us this disease has been slow I guess, it's one of those things I think you can never really compare one person with ALS to the next because everyone is so different and really progression is progression and all the symptoms are bad...it's just what you can tolerate or what each person views as one symptom being better than another and that really depends on each individual. For Bert, he likes to be active or as active as possible having a disease that takes your muscles and movement and all the while knowing that the only activity eventually will be with the help of a caregiver. Either way this decline has put up another hurdle and challenged our spirits and positivity. With this hurdle also came a sad time in our lives when we had to put our dog Bailey to sleep. Bert and I got him shortly after we were married; he lived a long happy life with us. He was Bert's dog...you know how pets just take to a certain person in the family, well Bailey loved Bert, they hiked together, ran together, mountain biked together, he was always at Bert's side, when Bailey did something bad you would hear me say "take care of YOUR dog"...as if he was not mine when he was naughty:) We are sad, we miss him and Bert hurts the most. Bailey understood Bert and he understood Bailey...they had a bond and when you are already dealing with ALS it is that much more heart breaking and it feels like nothing is going right.
We were also a little grumpy about our vacation coming up to the Outer Banks...we didn't really talk about it but we were both wondering if it was going to be worth it...I had checked into renting a beach wheelchair, good idea except that it was going to cost $400 for a two week rental and I wasn't sure I could even navigate the darn thing or talk Bert into sitting in it. I ended up texting our best friends who will be with us on vacation, and thankfully they saved the day. The phone rang after the text, my friend said don't worry they would bring their jeep and thankfully in OBX you can drive on the beach...so no worries he said we will drive Bert out to the beach and skip the huge and expensive beach wheelchair. He gave me a little pep talk and made me laugh, by the time I hung up with him I was feeling positive that we would have fun like always and that ALS was not going to mess up the vacation, I knew my friends would make it ok, Bert heard me talking on the phone and his mood perked up after as well.
Yesterday, I had my first meltdown in a while, I called my sister and cried, I cried about how I don't like this disease, and how confusing it is with all the what if's, how no one can give you any answers to anything, how I just wish that it didn't happen for us or anyone else in this world. I don't like to see my husband upset or hurt, and there is nothing I can do to take this away! I don't like that there are no answers and I don't like the decisions that have to be made. My sister who is calm and in control listened and then gave me the support and advice I needed to find the positive. It was hard to find a positive this time but I am proud of myself for reaching out and allowing the people who I love and who love us to help me find the positive.
So, what is the positive you ask? Friends. Family. The people who love us. They are the positive. ALS sucks, but the bigger the army you have behind you fighting it the better! Our BFFs from Florida always make everything better, when we are with them it feels "normal" and we can truly relax. Our family is our front line they are there to listen, to help clean, to run kids, mow, fix cars, help get handicap vans, hold hands, cheerlead, cook, manage fb pages, manage our diets, help us orgnaize:), love and really everything else. Our friends in our community are part of the army too...they help with mulch and yard work, they give wagons for soccer tournaments, they carry chairs and bags and find us good parking spots, they bring me coffee and support Bert at soccer practice and help both physically and mentally, they run kids too and are just there at the right time when we need them. Strangers from fb who answer my questions or send out their virtual support and prayers are there for us. Our doctors and clinic are there for us. I have been a needy caregiver with lots of questions and I have never been made to feel like a nuisance.
The positive is our army. The love, hope, and prayers that all the people who love and care about us provide. I am grateful for our army, I feel empowered and energized. So, we are going to push on, we will always find the positive, we will go to our appointment on Tuesday at UMass and face our fears, we will find a way around what is lost and move on to something new. I will work hard to keep perspective and be the positive light for my family. I will ride this roller coaster and I will learn to raise my arms high and learn to love the thrill...or at least tolerate it.
"I get by with a little help from my friends"
~John Lennon
xoxo Jennifer
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