Finally a trip to UMass without snow, we took this as a good sign. We have been traveling to Worcester Massachusetts since January for Bert to participate in a clinical trial, every time we have gone it snowed...but not this time:) We were happy for a sign of spring and new hope. These trips are full of mixed emotions, we are happy that Bert is able to participate in this trial, he feels like he is doing something for the disease by participating and we cannot help but feel hope that maybe it may help, and if it does that a whole lot of people might be helped. We are also cautious, we realize that there have been and are many clinical trials and so far no real treatment and no cure, however; eventually something will work and why can't it be this? That is where hope comes in, and we will continue to have hope no matter what, even if this trial is not the one, we will still have hope! We also are nervous with each trip, especially the baseline visits, because at these visits they are measuring progression, and of course we want more than anything that progression to be slow.
So, today we had baseline visit number three, the last visit before the drugs start. Breathing test first...I am always stressed about this, I want this to be the slowest progressing thing ever! We nervously sat in the clinical research suite and waited for our nurse to get all the equipement ready for measuring. Bert knows exactly what to do by now, he took the little computer in his hands, put his lips around the tubing took a few slow deep breathes and then blew slow and steady for as long as he could until his face is red and he has no more breath, our nurse coaching and encouraging the whole time. Great Job! That's what the little computer says when it's a good reading, a normal reading, 100%, thank you God. I cannot explain what the happiness of that little computer saying great job feels like, but to say it feels really good is an understatement. Next the strength measurements all of which were stable today. Even the finger on the right hand that is not too cooperative was still measureable and still working. While the spasticity is getting worse, everything still works and everything is progressing slowly at least for now. So for today, we are grateful. I am truly grateful for each day that we wake up and Bert is still breathing and even happier if we have a day where everything is status quo...I never knew I could be so happy with status quo. One day at a time, each and every moment we are grateful for, we take nothing for granted.
No matter what happens these trips to UMass have already been worth it, take nothing for granted, be grateful for each moment...Bert and I are happy to be together on these trips, we talk about a lot even stuff other than ALS, believe it or not there is other stuff:) We enjoy driving past New York City, a couple times having to detour through the city, Connecticut is a beautiful area, and Worcester's Resident's Inn is beginning to feel like a home away from home every month. We laugh, we sing 80's songs (our new addiction), and we talk about life and our kids. We can't wait to take Sophia and Alex so they can see where we go every month and so they can meet our Doctor and Nurse that take care of Bert and run the trial. These trips are a gift and we are grateful for them.
At the end of this month we head back to UMass for the first four drug days. It is scary but we have hope and faith that everything will be ok. It's a long road ahead with a lot of unknowns, but for now we remain focused only on this day and this moment, none of us are promised tomorrow. Today we are happy, grateful, and hopeful.
I said a little prayer today to God, I feel like when I pray I am always asking for help, for guidance, for forgiveness. I found a little prayer and it was the perfect prayer for today...Dear God, I want to take a minute, not to ask for anything from you, but simply to say thank you for all I have.
"Now Faith is being sure of what we Hope for and certain of what we do not see." ~Hebrews 11:1
xoxo Jennifer
So, today we had baseline visit number three, the last visit before the drugs start. Breathing test first...I am always stressed about this, I want this to be the slowest progressing thing ever! We nervously sat in the clinical research suite and waited for our nurse to get all the equipement ready for measuring. Bert knows exactly what to do by now, he took the little computer in his hands, put his lips around the tubing took a few slow deep breathes and then blew slow and steady for as long as he could until his face is red and he has no more breath, our nurse coaching and encouraging the whole time. Great Job! That's what the little computer says when it's a good reading, a normal reading, 100%, thank you God. I cannot explain what the happiness of that little computer saying great job feels like, but to say it feels really good is an understatement. Next the strength measurements all of which were stable today. Even the finger on the right hand that is not too cooperative was still measureable and still working. While the spasticity is getting worse, everything still works and everything is progressing slowly at least for now. So for today, we are grateful. I am truly grateful for each day that we wake up and Bert is still breathing and even happier if we have a day where everything is status quo...I never knew I could be so happy with status quo. One day at a time, each and every moment we are grateful for, we take nothing for granted.
No matter what happens these trips to UMass have already been worth it, take nothing for granted, be grateful for each moment...Bert and I are happy to be together on these trips, we talk about a lot even stuff other than ALS, believe it or not there is other stuff:) We enjoy driving past New York City, a couple times having to detour through the city, Connecticut is a beautiful area, and Worcester's Resident's Inn is beginning to feel like a home away from home every month. We laugh, we sing 80's songs (our new addiction), and we talk about life and our kids. We can't wait to take Sophia and Alex so they can see where we go every month and so they can meet our Doctor and Nurse that take care of Bert and run the trial. These trips are a gift and we are grateful for them.
At the end of this month we head back to UMass for the first four drug days. It is scary but we have hope and faith that everything will be ok. It's a long road ahead with a lot of unknowns, but for now we remain focused only on this day and this moment, none of us are promised tomorrow. Today we are happy, grateful, and hopeful.
I said a little prayer today to God, I feel like when I pray I am always asking for help, for guidance, for forgiveness. I found a little prayer and it was the perfect prayer for today...Dear God, I want to take a minute, not to ask for anything from you, but simply to say thank you for all I have.
"Now Faith is being sure of what we Hope for and certain of what we do not see." ~Hebrews 11:1
xoxo Jennifer
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