Almost two years ago John began his fight with ALS. The first doctors visit was long overdue but being the stubborn guy he is John put it off longer than he should have. He began to lose the ability to hold and use his tools with his left hand and also started tripping over his left foot. The intial doctors visit was a wake up call and we didn't even begin to know the half of what was going on. The doctor let John know that there was a possibility he may have had a stroke or the issues could be caused by something neurological. They sent him to the hospital that day for an MRI. The technician who preformed the MRI let us know we should consider the chance of this being Multiple Sclerosis. I remember praying that John be diagnosed with something other than MS but looking back now I would take that over Amyotrophic Lateral Sclerosis. The results from the MRI didn't give us an answer as to why he had weakness in his left side so then the doctors wanted to run more tests. The next step was a spinal tap but again even after enduring this painful test still no answer. John then went through many EMG tests where the nueroligist gave him a devastating diagnosis. The first nueroligist sent home some paperwork defining Progressive Muscular Atrophy. This information also said that this disease often leads to another called ALS. I will never forget the emotional pain I felt the night I read about ALS for the first time. Knowing that my husband would eventually lose all his muscle control, his ability to swallow, the ability to breathe on his own and even not be able to verably communicate.
Just a few short months after his diagnosis John was confined to a wheelchair. He was able to control his power chair at first using his right hand but once his hand became weak he began using a head control unit. Unfortunately he has lost the strength in his neck and has to depend on someone else to move his chair for him. Could you imagine not being able to move about through your house when you wanted to? He also has to ask for someone to help 'push the buttons' to reposition his body on the chair. Sitting in one position can be very uncomfortable, especially if you are stuck sitting all day.
John has spent many days in the Hospital in both NSICU and the Emergency room. His first visit was one of the scariest. He spent two weeks in NSICU with pneumonia. Fighting off any illness is hard for someone with ALS. John lost a lot of his movement after recovering from pneumonia. During this visit was the first time we were confronted with the tracheostomy and ventilator. Talk about an emotional decision. They let us know if he couldn't fight off the illness all they could do is put him on a ventilator but for people living with ALS it's very hard to come off. We decided it was best to see what his nueroligist thought and wait until that was the last option. He pulled through without needing the ventilator! Just 3 months after this long hospital stay he was back with breathing problems. With this hospital stay we learned John would need to be on a non-invasive ventilator 24/7 unless he choose the tracheostomy. It took some adjusting but John manages to deal with the discomfort of the non stop air pushing through his nostrils. He has tried many different masks and nasal pillows to try and find something comfortable but it is impossible. He has to occasionally switch out the masks to let his nose heal and then ends up with another pressure spot that causes discomfort. Through all of this what is the most frustrating for him is not being able to swallow. Just a few short months ago he began to have difficulty eating certain foods. But it didn't take long for this terrible disease to progress yet again and take something else away from him. He went from being able to eat small amounts to not even being able to swallow a drop of liquid. John also struggles to speak and has to try to repeat himself or ask me to be his 'narrator'. He struggles to open his mouth so that the words will come out and his voice has become very soft. Through all of this pain John still manages to be the same guy we all know and love. He enjoys getting to spend time with his nieces and nephews more than anything. I honestly can say I believe the kids are what keeps him fighting this battle!
Thank you all the support you show John!