Why participate in a clinical trial? Well, it's simple... ALS has no treatment and no cure and the only way to develop a treatment or a cure is to do research and experiments to find out what works and doesn't work and to learn more about the disease. Bert and I spoke from the beginning about what he could do and how I would support him in regards to research. Anyone who knows Bert knows he cannot sit still, even when he has a disease that essentially tries to make a person sit still. So, here we are in our first clinical trial: A Novel Immunosuppression Intervention for the Treatment of Amyotrophic Lateral Sclerosis at UMass Medical School in Worcester, MA. If you haven't already, please read the post titled Clinical Trial for the details of the trial Bert is participating in.
Today we had baseline visit #2, this visit consisted of a breathing test (slow vital capacity or SVC which is the maximum volume of air that can be exhaled slowly after slow maximum inhalation)...this measures if there is weakness in any muscles used to breathe, measurements of about ten muscles, again monitoring the progression of weakness, a neurological exam, reflexes and lots of strange balance and coordination type exercises are done during this exam, blood work to collect RNA (Ribonucleic acid) to keep it simple RNA works with DNA to make nucleic acids that along with proteins make macromolecules needed for all forms of life and some other blood for the basic labs, alsfrs score, and finally a lumbar puncture aka a spinal tap.
These visits are part of the protocol or rules if you will of the drug trial Bert is participating in, they need to measure and get a picture of how each patient is progressing, gather information from their blood work, spinal fluid, and urine, and use the exam to know each patient's symptoms and abilities so that once the drugs start they will be able to see if they are working. This is hard because it takes patience and you have to watch progression (which in ALS is a decline) before you can try the medication to see if it helps. Even then for example if the medication does help, after 6 months it will be stopped and the patients progression will be measured again for another 6 months. However, if no one participates and takes that risk how will anything every be found? So to all the brave ALS patients out there and their families who are willing to take this risk for the good of research and to help find a treatment or cure thank you!
I am always worried most about the breathing...to test breathing a small clear tube that is attached to a hand held computer that reminds me of a calculator is handed to the person, they put their mouth around the tube breathe in and out slowly until they are ready and then they take a deep breath and breathe out slowly for as long and as hard as they can until they are red and have no more breath. A score is than shown on the computer, today Bert's score was greater than 5 liters or 100% or as the machine said...great job! Breathing is still excellent which makes us really happy:) Then we went through the alsfrs score, this is answering 12 questions about the progression this score was one less than last time due to Bert's spasticity increasing and making it more difficult for him to walk. All the muscle strength measurements were stable which means nothing was any weaker than a month ago. The neurological exam was stable and the blood work and spinal tap went smoothly.
On a final note, Bert and I both feel like the Doctors and Nurses who are providers at the ALS Clinics and who work tirelessly within the clinical research trials deserve a hand. These clinicians not only work with science and medicine towards finding a treatment or a cure but also provide support and knowledge to each patient and family on a personal level with understanding that is deeper than a doctors visit. They become part of the journey as well and we are grateful for our Doctor and Nurse at UMass.
A safe trip to UMass, a successful baseline 2 visit, and a safe return home.
We will return for the final baseline visit in one month.
I am grateful for this day.
xoxo Jennifer
Today we had baseline visit #2, this visit consisted of a breathing test (slow vital capacity or SVC which is the maximum volume of air that can be exhaled slowly after slow maximum inhalation)...this measures if there is weakness in any muscles used to breathe, measurements of about ten muscles, again monitoring the progression of weakness, a neurological exam, reflexes and lots of strange balance and coordination type exercises are done during this exam, blood work to collect RNA (Ribonucleic acid) to keep it simple RNA works with DNA to make nucleic acids that along with proteins make macromolecules needed for all forms of life and some other blood for the basic labs, alsfrs score, and finally a lumbar puncture aka a spinal tap.
These visits are part of the protocol or rules if you will of the drug trial Bert is participating in, they need to measure and get a picture of how each patient is progressing, gather information from their blood work, spinal fluid, and urine, and use the exam to know each patient's symptoms and abilities so that once the drugs start they will be able to see if they are working. This is hard because it takes patience and you have to watch progression (which in ALS is a decline) before you can try the medication to see if it helps. Even then for example if the medication does help, after 6 months it will be stopped and the patients progression will be measured again for another 6 months. However, if no one participates and takes that risk how will anything every be found? So to all the brave ALS patients out there and their families who are willing to take this risk for the good of research and to help find a treatment or cure thank you!
I am always worried most about the breathing...to test breathing a small clear tube that is attached to a hand held computer that reminds me of a calculator is handed to the person, they put their mouth around the tube breathe in and out slowly until they are ready and then they take a deep breath and breathe out slowly for as long and as hard as they can until they are red and have no more breath. A score is than shown on the computer, today Bert's score was greater than 5 liters or 100% or as the machine said...great job! Breathing is still excellent which makes us really happy:) Then we went through the alsfrs score, this is answering 12 questions about the progression this score was one less than last time due to Bert's spasticity increasing and making it more difficult for him to walk. All the muscle strength measurements were stable which means nothing was any weaker than a month ago. The neurological exam was stable and the blood work and spinal tap went smoothly.
On a final note, Bert and I both feel like the Doctors and Nurses who are providers at the ALS Clinics and who work tirelessly within the clinical research trials deserve a hand. These clinicians not only work with science and medicine towards finding a treatment or a cure but also provide support and knowledge to each patient and family on a personal level with understanding that is deeper than a doctors visit. They become part of the journey as well and we are grateful for our Doctor and Nurse at UMass.
A safe trip to UMass, a successful baseline 2 visit, and a safe return home.
We will return for the final baseline visit in one month.
I am grateful for this day.
xoxo Jennifer
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