I am never sure if it is a good idea to go to clinic after just coming off of a long holiday weekend. Same thing last clinic, it fell right after the New Year, kinda a downer...but then again I guess it's only a downer if you choose to let it be.
First I gotta say, I am not sure how many people know what it is like to live with every moment being enhanced like it is the best day ever. That is how I feel most of the time, and I know Bert feels the same since it's been a topic of conversation since this beotch ALS became part of our family, she is a real pain in the ass in a lot of ways, but I gotta give it to her she sure does a good job of showing us how to live in the moment and really have fun. Bert and I never realized how preoccupied we were in the past, not really present in the present; not now, ALS came along and turned the light on and now we really live. Pretty funny when living for the person with ALS is so much more of a challenge. Whatever, life is ironic right? The memorial day weekend came along and was off to a working start, being that we started it working laying mulch in our over landscaped yard. Thank you God for our awesome friends and neighbors who generously offered to get the mulch for us and help us lay it. I have always dreaded mulching, but usually after two days of cursing the landscaping and sweating it's over and I am happy with how my flower gardens look. This year was different because mulching is so much more fun with friends, and a lot faster! I am always moved at what people are willing to do to help, they just really will never know what it means in the way of emotional support, and especially the kids in the neighborhood...I know the second, fourth, and sixth grader who helped me mulch with their parents on Saturday would have probably rather been doing something way more fun. They mulched and chatted with me and did it all with a smile. So grateful, and my flowers are extra special this year. I love our friends. Next, was an invite to the circus from another friend. I received an email a few days before from a soccer family asking if we would want to go to the circus, just so happens that Alex had never been to the circus so I said Yes what the heck it will probably be fun. That's the other thing, this crazy lady ALS does, she compels me to do things, anything new that might be fun, it's so weird that she has that ability to challenge me to open up and just enjoy people and life. I told Bert about the circus plans and guess what! He had never been to the circus either:) We decided it was going to be something to cross off the bucket list. So on Monday we decided to actually get dressed in something other than sweats, we were excited like little kids, giggling about the circus, I charged the camera, and as we were getting ready, Bert goes "should I gel my hair", that put me into hysterics, but he put gel in his hair and we were off. We had a great time with friends and seeing the circus for the first time. The weekend ended with a soccer practice, dinner to celebrate Bert's "retirement" I forgot to mention that his last day of work was on Friday, and a game of catch and spraying the trampoline with the hose in the backyard with Bert relaxing on the porch looking on. Best Memorial Day weekend ever.
I forgot to mention the "retirement", ALS caused that too, it was getting a little difficult to sell office supplies, go on appointments and do business reviews when you can't walk without assistance and you never know when your speech is going to have a mind of it's own. So, Bert made it official, his last day was Friday. The week before when he made the decision he called me at work, he was upset because of course you want to leave work on your own terms and not because ALS moved in. It's actually best to call me when I am at work with any kind of crisis, I am in calm Nurse mode when I am there and I can usually be a lot of help, I remain level headed and optomistic, so I let him get it all out and then together we decided that selling office supplies wasn't the greatest thing anyway so f@#% it, let's celebrate "retirement". The kids were thrilled, they have their dad for the summer and every day, no more "ya gotta wait a minute I am on a conference call". We got a card, the kids and I wrote messages to Bert and we celebrated with dinner. That was a grief so short lived I almost forgot to mention it:)
Now, to this morning and clinic. Bert ran the kids to school while I filled out all the paperwork of medications for clinic, there was a lot to add because of the drug trial and some changes that were made since last clinic five months ago. Bert dropped the kids off and then my phone rang, it was him, upset...he was a little irritated at me asking me why I didn't tell him his speech sounded terrible. I listened, then inquired about what brought this on, he told me he recorded an out going message to let customers know he is on medical leave and when he listened to it he could hear how according to him terrible his speech is. Bert has had some dysarthria since this time last year, many doctors say it is due to spasticity, I have no idea but I do know that sometimes it's good and sometimes I get a little panicky because it's not so good. I responded with a calm not defensive "it fluctuates babe, it's sometimes good and sometimes not so good", he wasn't really buying it. I then lead into a kind but firm lecture on how Steve Gleason just got home from the hospital after recovering from a tracheostomy, and if Steve Gleason can give this disease the finger than so can we, so get mad, cry, grieve a little or a lot, but we have kids and a life and a marriage and we are not going to let ALS take our happiness so put a smile on and lets get going to clinic! By the time Bert got home he gave me a wide smile and we were back to our giggly state. Off to clinic we went. I said it before and I will say it again, and please don't anyone take offense, but we have decided that the waiting room in neurology at Johns Hopkins ALS clinic could be about the scariest place on earth. Imagine all the ugly neurological diseases put together in one waiting room, well thats it for real. Bert and I are passed the scared part and into the more inappropriate morbid hysterical phase, we giggle a lot and we were giggling while we waited. I whispered to Bert that people may not appreciate our sense of humor in this area, but he said it was ok, because he was there with ALS one of the worst neurological illness there is and if he can laugh about it then it was acceptable, so hopefully no one is offened, sorry in advance if you are. I had my little note book so I wouldn't forget to ask all of our questions. We were placed in the same room in the cul-de-sac as last time. Kelly from OT came in first, she is a good discipline to start with because she is so cute and pleasant, you can't not love her. And guess what the first thing she said was, you got it, she said you don't need to come to speech clinic yet because your dyarthria is so mild. I gave Bert a little nudge, see I wasn't lying. Next came the lovely girl from the MDA, she wanted to hear about our adventures of blogging and fundraising, we told her all about Hope Loves Company the camp for kids with parents who have ALS (we may have gotten you more business than you wanted because she was very interested in the camp:). Then in came Lora and the nurse to do the dreaded breathing test, three big blows (and trust me Bert will tell you that breathing test blows) and we were stable, Amen. Finally, PT who trialed a rollator walker with Bert and ordered us a transport wheelchair for just in case...Bert was a little tall for the walker and not very into trying it out, but he did take a little spin around the culd-de-sac and made a smart comment about how he could just take the Wal Mart shopping cart home with him and use that because he really wasn't into using the same walker as the guy from the movie Up. As the therapist left she wished me luck with Bert, and believe me I am gonna need it as he is a real piece of work. So, was clinic a success? We think so, clinic is a place where you can say what you need and someone is there to help. We ended the afternoon with a trip the the Johns Hopkins cafeteria for lunch and talked and laughed and took the positive that ALS, as moody as she can get gave us... this day together. We promised each other, that no matter what, when the breathing test goes down, and the speech is no longer, and we arrive in a wheel chair we will look ALS in the eye and always, always, always find the positive. Because really in the end it's our choice!
xoxo Jennifer
First I gotta say, I am not sure how many people know what it is like to live with every moment being enhanced like it is the best day ever. That is how I feel most of the time, and I know Bert feels the same since it's been a topic of conversation since this beotch ALS became part of our family, she is a real pain in the ass in a lot of ways, but I gotta give it to her she sure does a good job of showing us how to live in the moment and really have fun. Bert and I never realized how preoccupied we were in the past, not really present in the present; not now, ALS came along and turned the light on and now we really live. Pretty funny when living for the person with ALS is so much more of a challenge. Whatever, life is ironic right? The memorial day weekend came along and was off to a working start, being that we started it working laying mulch in our over landscaped yard. Thank you God for our awesome friends and neighbors who generously offered to get the mulch for us and help us lay it. I have always dreaded mulching, but usually after two days of cursing the landscaping and sweating it's over and I am happy with how my flower gardens look. This year was different because mulching is so much more fun with friends, and a lot faster! I am always moved at what people are willing to do to help, they just really will never know what it means in the way of emotional support, and especially the kids in the neighborhood...I know the second, fourth, and sixth grader who helped me mulch with their parents on Saturday would have probably rather been doing something way more fun. They mulched and chatted with me and did it all with a smile. So grateful, and my flowers are extra special this year. I love our friends. Next, was an invite to the circus from another friend. I received an email a few days before from a soccer family asking if we would want to go to the circus, just so happens that Alex had never been to the circus so I said Yes what the heck it will probably be fun. That's the other thing, this crazy lady ALS does, she compels me to do things, anything new that might be fun, it's so weird that she has that ability to challenge me to open up and just enjoy people and life. I told Bert about the circus plans and guess what! He had never been to the circus either:) We decided it was going to be something to cross off the bucket list. So on Monday we decided to actually get dressed in something other than sweats, we were excited like little kids, giggling about the circus, I charged the camera, and as we were getting ready, Bert goes "should I gel my hair", that put me into hysterics, but he put gel in his hair and we were off. We had a great time with friends and seeing the circus for the first time. The weekend ended with a soccer practice, dinner to celebrate Bert's "retirement" I forgot to mention that his last day of work was on Friday, and a game of catch and spraying the trampoline with the hose in the backyard with Bert relaxing on the porch looking on. Best Memorial Day weekend ever.
I forgot to mention the "retirement", ALS caused that too, it was getting a little difficult to sell office supplies, go on appointments and do business reviews when you can't walk without assistance and you never know when your speech is going to have a mind of it's own. So, Bert made it official, his last day was Friday. The week before when he made the decision he called me at work, he was upset because of course you want to leave work on your own terms and not because ALS moved in. It's actually best to call me when I am at work with any kind of crisis, I am in calm Nurse mode when I am there and I can usually be a lot of help, I remain level headed and optomistic, so I let him get it all out and then together we decided that selling office supplies wasn't the greatest thing anyway so f@#% it, let's celebrate "retirement". The kids were thrilled, they have their dad for the summer and every day, no more "ya gotta wait a minute I am on a conference call". We got a card, the kids and I wrote messages to Bert and we celebrated with dinner. That was a grief so short lived I almost forgot to mention it:)
Now, to this morning and clinic. Bert ran the kids to school while I filled out all the paperwork of medications for clinic, there was a lot to add because of the drug trial and some changes that were made since last clinic five months ago. Bert dropped the kids off and then my phone rang, it was him, upset...he was a little irritated at me asking me why I didn't tell him his speech sounded terrible. I listened, then inquired about what brought this on, he told me he recorded an out going message to let customers know he is on medical leave and when he listened to it he could hear how according to him terrible his speech is. Bert has had some dysarthria since this time last year, many doctors say it is due to spasticity, I have no idea but I do know that sometimes it's good and sometimes I get a little panicky because it's not so good. I responded with a calm not defensive "it fluctuates babe, it's sometimes good and sometimes not so good", he wasn't really buying it. I then lead into a kind but firm lecture on how Steve Gleason just got home from the hospital after recovering from a tracheostomy, and if Steve Gleason can give this disease the finger than so can we, so get mad, cry, grieve a little or a lot, but we have kids and a life and a marriage and we are not going to let ALS take our happiness so put a smile on and lets get going to clinic! By the time Bert got home he gave me a wide smile and we were back to our giggly state. Off to clinic we went. I said it before and I will say it again, and please don't anyone take offense, but we have decided that the waiting room in neurology at Johns Hopkins ALS clinic could be about the scariest place on earth. Imagine all the ugly neurological diseases put together in one waiting room, well thats it for real. Bert and I are passed the scared part and into the more inappropriate morbid hysterical phase, we giggle a lot and we were giggling while we waited. I whispered to Bert that people may not appreciate our sense of humor in this area, but he said it was ok, because he was there with ALS one of the worst neurological illness there is and if he can laugh about it then it was acceptable, so hopefully no one is offened, sorry in advance if you are. I had my little note book so I wouldn't forget to ask all of our questions. We were placed in the same room in the cul-de-sac as last time. Kelly from OT came in first, she is a good discipline to start with because she is so cute and pleasant, you can't not love her. And guess what the first thing she said was, you got it, she said you don't need to come to speech clinic yet because your dyarthria is so mild. I gave Bert a little nudge, see I wasn't lying. Next came the lovely girl from the MDA, she wanted to hear about our adventures of blogging and fundraising, we told her all about Hope Loves Company the camp for kids with parents who have ALS (we may have gotten you more business than you wanted because she was very interested in the camp:). Then in came Lora and the nurse to do the dreaded breathing test, three big blows (and trust me Bert will tell you that breathing test blows) and we were stable, Amen. Finally, PT who trialed a rollator walker with Bert and ordered us a transport wheelchair for just in case...Bert was a little tall for the walker and not very into trying it out, but he did take a little spin around the culd-de-sac and made a smart comment about how he could just take the Wal Mart shopping cart home with him and use that because he really wasn't into using the same walker as the guy from the movie Up. As the therapist left she wished me luck with Bert, and believe me I am gonna need it as he is a real piece of work. So, was clinic a success? We think so, clinic is a place where you can say what you need and someone is there to help. We ended the afternoon with a trip the the Johns Hopkins cafeteria for lunch and talked and laughed and took the positive that ALS, as moody as she can get gave us... this day together. We promised each other, that no matter what, when the breathing test goes down, and the speech is no longer, and we arrive in a wheel chair we will look ALS in the eye and always, always, always find the positive. Because really in the end it's our choice!
xoxo Jennifer
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