The disease causes your muscles to basically die and waste away. Coughing is harder because you do not have muscle strength to cough. Breathing becomes labored because your diaphragm is also a muscle and stops working. You eventually get put on a machine that assists your breathing (Our dad is on this machine now). Eating and talking become difficult and take away what little bit of energy that you do have. Our dad has trouble holding his razor up to shave because he is too tired and weak to do so. Our dad has trouble eating and has to have everything cut up really small and he doesn't even get hungry anymore. There is a big chance he can aspirate, which basically means your food goes down the wrong "pipe" towards your lungs. This can cause infections and other problems. He now has a feeding tube because eventually, these problems will prevent him from eating. We had the feeding tube installed now knowing of upcoming problems, but also because your stomach actually moves up into your chest cavity because muscles are no longer strong enough to keep the stomach down where it should be. Thus, it makes it difficult to install a feeding tube through your ribs, so it's best to install it before that can happen.
The afore mentioned side affects of ALS are not even the worst of this disease. At some point, our dad will not be able to move at all. He will not be able to swat a fly on his own nose or scratch an itch. He will not be able to talk or ask for help. Finally, he will not be able to breath at all without life support. Our dad refuses to be put on life support as he feels it is not really living at all.
There is no cure for this disease. The only treatments are to make the patient comfortable until he or she passes.
My family and I are hoping to recoup some of the costs we have already spend that insurances do not cover. Dad, of course, can no longer provide for the household in his condition and Mom is doing her best working 2 minimum wage jobs. Us "kids" (we are adults now) are doing what we can. Unfortunately, expenses are way out of our reach of what we can afford. The house they are living in is dire need of some important repairs. For example, the whole house furnace/ac is at least 20 years old and is not keeping up with the thermostat. We set the thermostat to 79 and temperature gets to 90 right now at end of June month. We really need a new system. The hotter it is, the more difficult for my dad's breathing and he is on his machine more. I am afraid it is going to speed up the process of the disease. A new system costs around $6,000.
My dad, mom, and I have been worried about power going out as well. Power goes out every year a few times during Monsoon season which is coming up in a couple weeks. If power goes out, so does the a/c. My dad's breathing machine does have a battery backup, but will only last so long. Plus, we don't want to depend on a battery backup. We need a generator. A good whole house generator costs around $1,000.
We also have rotted siding and trim, windows that leak with damaged drywall inside, and a laundry room floor that is in pretty bad shape from flooding from a leak that came from the house a/c.
We will also need a wheelchair ramp soon and some doorways modified to allow the wheelchair through...more unforeseen expenses. We also had to install new lever doorknobs through the house because dad couldn't turn the round ones.
Dad is taking everything well (or so it seems) and seems to remain positive. He watches tv a lot. He is too weak to go outside without a wheelchair, so we are wanting to buy him an electric one or a scooter...just something to get him out of the house. Dad never got a retirement. He worked up until he was diagnosed with this disease. Us "kids" and mom want to see him get out of the house and not feel trapped. We would like him to enjoy a few more memories going to a few places before he is unable to.
We thank you in advance for any help you can offer. A little is a lot and no amount is too small to make a difference or to be appreciated.
Bill Jr, Joanie, Jody, & Danielle