I am so happy that ALS awareness and donations exploded with the Ice Bucket Challenge. I can’t even imagine what it would be like if a cure was found for my husband Jim. We have forced ourselves into acceptance because at this point there is no cure.
For those of you who have never really witnessed anyone suffering from ALS, I’ll give you a brief rundown on Jim’s experience. When Jim was a muscular athletic 33 year old, he noticed weakness in his hand, mainly ability to pinch. He then experienced fasiculations (muscle twitching due to nerve death) in his upper body and eventually in his legs. The weakness spread to his other hand, then up his arms. It took 5 years for a diagnosis because it was unusually slow progression for ALS. He couldn’t hold our sons, change a diaper. It took 2 hands to get a fork or a cup to his mouth. He used a computer by putting a track ball mouse on the floor and using his feet.
Next went his speech and swallowing. I always made sure I was by Jim’s side to translate when Jim was talking. So much for his privacy. If he wanted to talk on the phone, it had to be on speaker, with me repeating things for him. I had to feed him because he could no longer get food to his mouth. Eventually I had to worry about him choking. Do you know how hard it was for him to give up Doritos and peanuts?? I saw my husband go from 185 pounds of muscle to 112 pounds of skin and bones and that was even with a feeding tube.
We went through the falling stage. Falling is much worse when you don’t have arm strength to protect you. Jim is a stubborn guy- he refused to sit still and because of that, he ended up with numerous stitches, always somewhere on his head and one massive concussion. It made me really look bad. I was a physical therapist on the Falls Committee at work and my husband was a repeat offender in the Emergency Room! He finally gave in and started using a power wheelchair that he controls with his foot.
His breathing became compromised and he started using a bipap at night. Losing lung function caused his voice to get softer and softer and he could only get out one or two words in between breaths. Due to slurred speech and breathlessness he started using a computer for speech that he controlled with his eyes. I miss his voice! In February of 2011 he got a trachostomy and went on a ventilator. He can no longer be alone for any period of time. We have nurses in our home for 12 hours a day. I am his caretaker the other 12 hours a day.
Nursing care through an agency costs $50/hour. That’s $18,000 a month, $216,000/year. Add in all of his medical supplies. Jim is a veteran. ALS is a service connected disease. You are 60% more likely to get ALS if you are a veteran, therefore the VA pays for his care, medications, supplies and equipment.
Medicare and most private insurances do not pay for ongoing skilled nursing in the home. You are expected to spend down all your money, go on Medicaid and go into a nursing home. This is why most people do not choose to go on a ventilator. They can’t afford it. They have to choose death, with a mind that is perfectly fine, but a body that does not move, because they don’t want to be a physical, emotional or financial burden on their families. They also can’t afford assistive technology like speech devices and power wheelchairs which give people quality of life. These are tens of thousands of dollars. Oh, and if you get a power chair, you have to get a van with a lift- add another $50,000. And you will have to widen your doorways, put in a ramp, modify your bathroom and get a Hoyer lift so you can get from bed to chair.
Now can you see why we need a cure for this disease??? What happened to Jim over 16 years happens to others in 16 months. Yes, it’s that fast. By the time you get that piece of equipment you ordered, it is no longer useful because you are too weak and need something else. SO- continue to dump those ice buckets and don’t forget to send in a donation- even if it’s a dollar! Keep this thing going!!!
THANK YOU THANK YOU EVERYONE!!!