Time, it keeps moving forward. The seasons, they keep changing and life, it keeps moving along. We are approaching the one year anniversary of the official ALS diagnosis. We are wondering if we should use it as a reason to celebrate survival, maybe drink champagne and eat cake? We are well over the two year mark since this whole life of uncertainty began, we are six months into the drug trial and have already attended our third ALS clinic appointment. I don't know about the champagne but I for one am always up for cake.
This week was a week of mixed emotions. It started out with a trip to Johns Hopkins to complete a trial called the PET scan trial. This consisted of an arterial IV line being placed in one arm, a peripheral line in the other and a plastic mask of Bert's face being made to hold his head still while it was maneuvered into the small hole of a very large camera. His head remained in the hole for about two and a half hours while they injected an experimental trial drug into his IV that would essentially light up an amino acid called glutamate (it is thought that people with ALS have a prolonged excitation of glutamate, not clearing it correctly and making it toxic)...anyway the point was or is for the doctors and scientists to hopefully see the glutemate therefore be able to see changes in it after they give a drug and through the PET scan measure whether the drug is working. Sorry, all that science is probably boring to most people, but for us it is another important thread of hope that something will be found to eradicate ALS from this earth. These trials are difficult, traveling, missing work, leaving the kids at home...but they are important because without them there will be no advancement. Bert is a trooper, it is a lot of poking and prodding and sometimes painful procedures. When they put the arterial line in I stepped out of the room for a moment, when I returned he was white and clamy with droplets of sweat on his brow. I knew the almost passing out look well, but he smiled proudly and described how he breathed through it, demonstrating with pursed lips looking as though he was a pregnant woman in labor...this made us giggle. I inquired whether the doctors noticed he was turning the color of a sheet, nope he said, they just kept working and I just kept breathing. Doctors! I said, irritated that they had not even offered some juice or to lay down (sorry but I am a nurse and we nurses are a tad more attentive...a doctor should always have one of us on hand), just then the doctor pushed the door open and asked Bert how he was, and if he needed anything...I am pretty sure he heard my grumbling:) After the PET scan we took the opportunity to venture down to Inner Harbor and enjoy an hour of the beautiful fall weather and had an early dinner at Phillips before fighting the commuter traffic on the return trip home.
That was Friday, Saturday was an intense U11 soccer game which I will proudly say our team of boys fought till the end to win:) After the game we drove to Maryland to my sister's house to celebrate my Dad's birthday. We enjoyed the company of all our little nieces and nephews as they enthusiastically showed us their painted pumpkins and scarecrows they made before we arrived. Their happy innocent faces just make life better. Sunday, chores needed to be done. The lawn needed mowing and the landmines of dog poop in the back yard needed picked up, I needed to run the vacuum and start the laundry. Bert was determined to mow with the riding mower. I asked him to wait a second and I would help him but the next thing I knew I noticed the walker in the garage and heard the sound of the mower in our back yard. Sure enough there he was mowing the lawn, I sent Sophia outside to keep her eye on him. I have found it useless to try and stop him from doing what he wants even if I deem it unsafe.
Tuesday we had our favorite, ALS clinic (can you hear the sarcasm in my words)? It was our third time at clinic so one would think that we would be pros, but I don't think we will ever get used to clinic. Clinic is best described as a kind of Jekyll and Hyde, it is the most sinister place to find yourself, but yet filled with the nicest clinicians who are all there to help. Our appointment was at noon, they have a small dry erase board outside the hallway leading to the clinic rooms that keep patients updated on the wait time for their doctor. We checked in and sat down in the waiting room when the nurse came out and wrote on the board, they were running one hour behind, she drew a frown face and spelled out s-o-r-r-y on the board. Bert and I made a dash for the cafeteria for a quick burger, we could not bear to to sit in the waiting area of neurology for an hour watching so many other people who are suffering from this horrid disease. Sometimes it's just healthier to remove yourself from the clinic waiting room and eat a bacon mushroom cheese burger and fries. Clinic went as well as could be if you like talking about built up utensils and walkers. Breathing was stable so thats always a plus, Bert and I practiced our math while we were waiting for Lora to enter our clinic room. We tried to calculate progression and years with our own made up formula...math has never been my strong subject so I came up with him living well into his 80's, Bert corrected me to the number that he came up with, which did not suit me so I ignored him. We giggled as I tried to look under the door for light, we thought they may have all left for the day and forgot we were in there, we practiced assessing our reflexes with the reflex hammer that lay on the counter in our room, we behaved like mischievious adolescents while we waited. When Lora entered she reviewed Bert's ALSFRS score (the questionaire they ask people with ALS to measure progression) he very seriously asked for it back, she gave him the paper with a puzzled look, "I just lost 5 points while I was waiting" he said, we all burst out laughing. Thats what I love about Bert, he still has his sense of humor. We left clinic with a catalog of handy gadgets for eating and cutting food, stable breathing for now and an appointment to return in February, we cannot wait! We battled the Baltimore commuter traffic for the second time in a week and when we returned home I helped Bert onto the bike trainer so he could work out. I felt like I needed a nap! I helped him with his shoes and assisted him on the bike making him promise not to ride too hard. I went in the workout room every 15 minutes or so to check on him, he was of course dripping sweat and peddling hard, legs shaking from the spasticity and clonus. He smiled at me and I rolled my eyes, I guess if that bike kills him he will die happy, I threw my arms up and left the room until it was time to get him off. One work day to go and then off to UMass for the six month trial appointment.
On Wednesday I went to work for a half day, I left early so we could leave for UMass, everything packed and ready to go, then we decided we wanted to watch Sophie run in her cross country meet before leaving. It was an awesome fall day for running, she did great, ran 3 minutes faster than the last race on that course. We kissed the kids goodbye and were off to Worcester. It was late and about two hours in it started to rain. We took the Subaru and the manual wheelchair to save money on gas and not to put miles on the wheelchair van until we absolutely have to. We stopped at the rest stop we knew had a family bathroom so I could help Bert, we navigated getting into the wheelchair in the pouring down rain and got through the obstacle course of heavy doors and to the family restroom. I have concluded that whoever designs handicap accessible public areas does not have a disability. The family restroom was occupied, so we waited and waited and waited, about 15 minutes passed. As we were deciding if I should just barge in the mens bathroom and be done with it, a gray haired gentleman approached me, he was holding his Starbucks coffee, he matter of factly handed me the coffee asking me to hold it for him while he took Bert into the mens room and helped him stand, waited with him and then wheeled him back out. Thank you God for the good that is still in this world. The man never asked what was wrong with Bert, simply helped him, retrieved his coffee and wished us a good night. it is those acts of kindness that motivate Bert and I to continue to always find the positive and know that we can do this. We arrived wet and tired in Worcester around midnight. I ate Hagen Daz Butter Pecan ice cream and Bert ate a Hot Pocket from the hotel pantry at midnight on our bed at the Residence Inn...we made it and we were grateful.
Thursday morning 8am six month Immunosuppression drug trial appointment. Six months since drugs, ten months since we started the trial, a little over half way. Today drugs were finished. The next six months are measurements of progression and data collection. For Bert the trial drugs did not seem to work, that is not to say they are not for someone else in the trial. Bert's progression has been slow but continuing the same since the baseline visits and for success they were looking for the ALSFRS score to be increasing on average one point per month and essentially to show improvement not progression. This appointment consisted of the usual measurements, breathing test, blood for safety labs and biomarkers and a spinal tap. We handed in the drugs and the diary which was really only a tracker that Bert had taken the medication in the appropriate dose at the correct time...he never had much to write in the diary as he had no improvement with the drugs and no adverse reactions either. Breathing was stable and continues to be normal, the strength measurements continue to decrease in his hands and wrists slowly, the other strength measurements remained stable this appointment but have decreased slowly on the look back at all the visits. Spinal taps are never fun, but this one was particularly not fun. With the first shot of numbing medicine Bert winced, began to sweat and turned pale. Our nurse Diane was at his side, I was off down the hall to grab apple juice. The first needle which they ironically call an Atraumatic needle (it is supposed to decrease the rate of headache) did not work to get the spinal fluid running, so another needle had to be inserted. Bert was hunched over the exam table, arms bent over a bedside table in front of him, Diane and I at his side providing sips of apple juice. With the second needle not wanting to cooperate either, Diane went off to find a third needle. Bert was pale, sweaty but patient as he gave me a smile and a thumbs up. Finally after pulling the needle in and out, up and down, his spine was happy with the position and the faucet of spinal fluid was turned on and flowing. The tubes were collected quickly once the flow began. The needle was removed and a band aid applied, we waited the 45 minutes of recovery time laying flat on the table to prevent a headache. We left empty handed and will not return till December. Measurements and data collection will continue till spring then one final safety visit and this trial chapter will be closed. As we left the clinical research suite at UMass Bert's first comment was "I can't wait to eat Sush!" and "oh I get a Mountain Dew too!" He was told he should not eat raw fish while on the immunosuppression drugs and he gets to drink the Mountain Dew after the spinal tap for the caffeine to prevent a headache. I was feeling a strange, not really disappointed, rather a mixture of uncomfortable change along with a feeling of nervousness. I felt slightly at ease with his focus on eating Sushi. Yes, we might as well look forward to eating Sushi, we had already decided that it is what we are having for Thanksgiving dinner. Sophia and I are going to try and make some of our own, and have lots of take out as back up. My mouth watered as we made our way to find our car. We were going back to the hotel to relax. We learned our lesson with the last spinal tap that it is not a good idea to jump in the car and drive 6+ hours, Bert had a headache for four days, so this time he was going to follow doctors orders and lay in bed flat for a while.
When we started this clinical trial we said that no matter the outcome this trial would be a success to us. We are over the half way mark and we still feel that all research trials are a success. There is no other way to learn, discover, or change the outcome of this disease without the trial and error of research. Research is a must. It is difficult and frustrating at times, it is hard to wait when this is a disease of being up against the clock. Time is ticking from the first symptom, it is not easy to understand why everything takes so long, especially if you are not familiar with medicine or science. Bert and I believe that all the research trials for ALS are important. Not all trials are drug trials, not all trials are stem cell trials, but all of them move our doctors and scientists one step closer to finding the why, finding that biomarker, finding a treatment and eventually a cure. When I asked Bert what I should write about research he said "Just Do It," I guess that sums it up simply. Bert feels like while he is still able he will take the risk and participate, we realize that most of the trials may not help him specifically in the long run, but Bert feels strongly that it is worth it to help those in the future. We will continue to support and advocate for ALS research, we will continue to participate as much as possible. For those ALS patients that cannot participate Bert will participate for you and for those who will be diagnosed in the future he participates for you.
As for me, I continue to have faith and believe. I will continue to support Bert assisting him so he can accomplish what he wants and help anyone living with this disease that I can. I will advocate and support research. I will trust this journey called life and I will always find the positive. We are going to celebrate this anniversary of fighting and surviving, we are going to celebrate every moment life has to offer, probably with a beer rather than the bubbly, and we are definitely going to eat cake!
xoxo~ Jennifer
This week was a week of mixed emotions. It started out with a trip to Johns Hopkins to complete a trial called the PET scan trial. This consisted of an arterial IV line being placed in one arm, a peripheral line in the other and a plastic mask of Bert's face being made to hold his head still while it was maneuvered into the small hole of a very large camera. His head remained in the hole for about two and a half hours while they injected an experimental trial drug into his IV that would essentially light up an amino acid called glutamate (it is thought that people with ALS have a prolonged excitation of glutamate, not clearing it correctly and making it toxic)...anyway the point was or is for the doctors and scientists to hopefully see the glutemate therefore be able to see changes in it after they give a drug and through the PET scan measure whether the drug is working. Sorry, all that science is probably boring to most people, but for us it is another important thread of hope that something will be found to eradicate ALS from this earth. These trials are difficult, traveling, missing work, leaving the kids at home...but they are important because without them there will be no advancement. Bert is a trooper, it is a lot of poking and prodding and sometimes painful procedures. When they put the arterial line in I stepped out of the room for a moment, when I returned he was white and clamy with droplets of sweat on his brow. I knew the almost passing out look well, but he smiled proudly and described how he breathed through it, demonstrating with pursed lips looking as though he was a pregnant woman in labor...this made us giggle. I inquired whether the doctors noticed he was turning the color of a sheet, nope he said, they just kept working and I just kept breathing. Doctors! I said, irritated that they had not even offered some juice or to lay down (sorry but I am a nurse and we nurses are a tad more attentive...a doctor should always have one of us on hand), just then the doctor pushed the door open and asked Bert how he was, and if he needed anything...I am pretty sure he heard my grumbling:) After the PET scan we took the opportunity to venture down to Inner Harbor and enjoy an hour of the beautiful fall weather and had an early dinner at Phillips before fighting the commuter traffic on the return trip home.
That was Friday, Saturday was an intense U11 soccer game which I will proudly say our team of boys fought till the end to win:) After the game we drove to Maryland to my sister's house to celebrate my Dad's birthday. We enjoyed the company of all our little nieces and nephews as they enthusiastically showed us their painted pumpkins and scarecrows they made before we arrived. Their happy innocent faces just make life better. Sunday, chores needed to be done. The lawn needed mowing and the landmines of dog poop in the back yard needed picked up, I needed to run the vacuum and start the laundry. Bert was determined to mow with the riding mower. I asked him to wait a second and I would help him but the next thing I knew I noticed the walker in the garage and heard the sound of the mower in our back yard. Sure enough there he was mowing the lawn, I sent Sophia outside to keep her eye on him. I have found it useless to try and stop him from doing what he wants even if I deem it unsafe.
Tuesday we had our favorite, ALS clinic (can you hear the sarcasm in my words)? It was our third time at clinic so one would think that we would be pros, but I don't think we will ever get used to clinic. Clinic is best described as a kind of Jekyll and Hyde, it is the most sinister place to find yourself, but yet filled with the nicest clinicians who are all there to help. Our appointment was at noon, they have a small dry erase board outside the hallway leading to the clinic rooms that keep patients updated on the wait time for their doctor. We checked in and sat down in the waiting room when the nurse came out and wrote on the board, they were running one hour behind, she drew a frown face and spelled out s-o-r-r-y on the board. Bert and I made a dash for the cafeteria for a quick burger, we could not bear to to sit in the waiting area of neurology for an hour watching so many other people who are suffering from this horrid disease. Sometimes it's just healthier to remove yourself from the clinic waiting room and eat a bacon mushroom cheese burger and fries. Clinic went as well as could be if you like talking about built up utensils and walkers. Breathing was stable so thats always a plus, Bert and I practiced our math while we were waiting for Lora to enter our clinic room. We tried to calculate progression and years with our own made up formula...math has never been my strong subject so I came up with him living well into his 80's, Bert corrected me to the number that he came up with, which did not suit me so I ignored him. We giggled as I tried to look under the door for light, we thought they may have all left for the day and forgot we were in there, we practiced assessing our reflexes with the reflex hammer that lay on the counter in our room, we behaved like mischievious adolescents while we waited. When Lora entered she reviewed Bert's ALSFRS score (the questionaire they ask people with ALS to measure progression) he very seriously asked for it back, she gave him the paper with a puzzled look, "I just lost 5 points while I was waiting" he said, we all burst out laughing. Thats what I love about Bert, he still has his sense of humor. We left clinic with a catalog of handy gadgets for eating and cutting food, stable breathing for now and an appointment to return in February, we cannot wait! We battled the Baltimore commuter traffic for the second time in a week and when we returned home I helped Bert onto the bike trainer so he could work out. I felt like I needed a nap! I helped him with his shoes and assisted him on the bike making him promise not to ride too hard. I went in the workout room every 15 minutes or so to check on him, he was of course dripping sweat and peddling hard, legs shaking from the spasticity and clonus. He smiled at me and I rolled my eyes, I guess if that bike kills him he will die happy, I threw my arms up and left the room until it was time to get him off. One work day to go and then off to UMass for the six month trial appointment.
On Wednesday I went to work for a half day, I left early so we could leave for UMass, everything packed and ready to go, then we decided we wanted to watch Sophie run in her cross country meet before leaving. It was an awesome fall day for running, she did great, ran 3 minutes faster than the last race on that course. We kissed the kids goodbye and were off to Worcester. It was late and about two hours in it started to rain. We took the Subaru and the manual wheelchair to save money on gas and not to put miles on the wheelchair van until we absolutely have to. We stopped at the rest stop we knew had a family bathroom so I could help Bert, we navigated getting into the wheelchair in the pouring down rain and got through the obstacle course of heavy doors and to the family restroom. I have concluded that whoever designs handicap accessible public areas does not have a disability. The family restroom was occupied, so we waited and waited and waited, about 15 minutes passed. As we were deciding if I should just barge in the mens bathroom and be done with it, a gray haired gentleman approached me, he was holding his Starbucks coffee, he matter of factly handed me the coffee asking me to hold it for him while he took Bert into the mens room and helped him stand, waited with him and then wheeled him back out. Thank you God for the good that is still in this world. The man never asked what was wrong with Bert, simply helped him, retrieved his coffee and wished us a good night. it is those acts of kindness that motivate Bert and I to continue to always find the positive and know that we can do this. We arrived wet and tired in Worcester around midnight. I ate Hagen Daz Butter Pecan ice cream and Bert ate a Hot Pocket from the hotel pantry at midnight on our bed at the Residence Inn...we made it and we were grateful.
Thursday morning 8am six month Immunosuppression drug trial appointment. Six months since drugs, ten months since we started the trial, a little over half way. Today drugs were finished. The next six months are measurements of progression and data collection. For Bert the trial drugs did not seem to work, that is not to say they are not for someone else in the trial. Bert's progression has been slow but continuing the same since the baseline visits and for success they were looking for the ALSFRS score to be increasing on average one point per month and essentially to show improvement not progression. This appointment consisted of the usual measurements, breathing test, blood for safety labs and biomarkers and a spinal tap. We handed in the drugs and the diary which was really only a tracker that Bert had taken the medication in the appropriate dose at the correct time...he never had much to write in the diary as he had no improvement with the drugs and no adverse reactions either. Breathing was stable and continues to be normal, the strength measurements continue to decrease in his hands and wrists slowly, the other strength measurements remained stable this appointment but have decreased slowly on the look back at all the visits. Spinal taps are never fun, but this one was particularly not fun. With the first shot of numbing medicine Bert winced, began to sweat and turned pale. Our nurse Diane was at his side, I was off down the hall to grab apple juice. The first needle which they ironically call an Atraumatic needle (it is supposed to decrease the rate of headache) did not work to get the spinal fluid running, so another needle had to be inserted. Bert was hunched over the exam table, arms bent over a bedside table in front of him, Diane and I at his side providing sips of apple juice. With the second needle not wanting to cooperate either, Diane went off to find a third needle. Bert was pale, sweaty but patient as he gave me a smile and a thumbs up. Finally after pulling the needle in and out, up and down, his spine was happy with the position and the faucet of spinal fluid was turned on and flowing. The tubes were collected quickly once the flow began. The needle was removed and a band aid applied, we waited the 45 minutes of recovery time laying flat on the table to prevent a headache. We left empty handed and will not return till December. Measurements and data collection will continue till spring then one final safety visit and this trial chapter will be closed. As we left the clinical research suite at UMass Bert's first comment was "I can't wait to eat Sush!" and "oh I get a Mountain Dew too!" He was told he should not eat raw fish while on the immunosuppression drugs and he gets to drink the Mountain Dew after the spinal tap for the caffeine to prevent a headache. I was feeling a strange, not really disappointed, rather a mixture of uncomfortable change along with a feeling of nervousness. I felt slightly at ease with his focus on eating Sushi. Yes, we might as well look forward to eating Sushi, we had already decided that it is what we are having for Thanksgiving dinner. Sophia and I are going to try and make some of our own, and have lots of take out as back up. My mouth watered as we made our way to find our car. We were going back to the hotel to relax. We learned our lesson with the last spinal tap that it is not a good idea to jump in the car and drive 6+ hours, Bert had a headache for four days, so this time he was going to follow doctors orders and lay in bed flat for a while.
When we started this clinical trial we said that no matter the outcome this trial would be a success to us. We are over the half way mark and we still feel that all research trials are a success. There is no other way to learn, discover, or change the outcome of this disease without the trial and error of research. Research is a must. It is difficult and frustrating at times, it is hard to wait when this is a disease of being up against the clock. Time is ticking from the first symptom, it is not easy to understand why everything takes so long, especially if you are not familiar with medicine or science. Bert and I believe that all the research trials for ALS are important. Not all trials are drug trials, not all trials are stem cell trials, but all of them move our doctors and scientists one step closer to finding the why, finding that biomarker, finding a treatment and eventually a cure. When I asked Bert what I should write about research he said "Just Do It," I guess that sums it up simply. Bert feels like while he is still able he will take the risk and participate, we realize that most of the trials may not help him specifically in the long run, but Bert feels strongly that it is worth it to help those in the future. We will continue to support and advocate for ALS research, we will continue to participate as much as possible. For those ALS patients that cannot participate Bert will participate for you and for those who will be diagnosed in the future he participates for you.
As for me, I continue to have faith and believe. I will continue to support Bert assisting him so he can accomplish what he wants and help anyone living with this disease that I can. I will advocate and support research. I will trust this journey called life and I will always find the positive. We are going to celebrate this anniversary of fighting and surviving, we are going to celebrate every moment life has to offer, probably with a beer rather than the bubbly, and we are definitely going to eat cake!
xoxo~ Jennifer
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