Parkinson's Care - The Disease, The Reality

Parkinson's Disease breaks down communication of the brain to the nerve endings that control movement. There is a more technical description, but that's the gist of it. Untreated Parkinson's can be like total paralysis. Even with Parkinson's care, the patient can have symptoms like freezing in place, or not being able to swallow or speak. Not every Parkinson's patient has the same symptoms. We have been to Parkinson's support groups where each participant had none, some, or little outward symptoms of this disease. My husband was often the only wheelchair patient.

My husband's Parkinson's Disease was diagnosed in 1998. For the first 4-5 years you would not know to look at him that he was anything but fit. Since then, as the disease progresses, his symptoms are moderate to severe, changing from day to day. In late 2006 he developed problems swallowing. He could not swallow water or applesauce and therefore could not swallow his pills. He could not swallow the pills that would allow him to swallow. It was a continuing downward spiral. I started looking at cemetery plots.

He wound up in the hospital for 5 days on intravenous fluids to rehydrate him. Once stabilized, they sent him home with a feeding tube installed because he still could not swallow food or water. His pills were administered through the feeding tube for a few days. Finally some of his muscle control returned and he was able to take his pills again. Soon he was able to swallow liquids and within 2 weeks he was eating solid food again. Not steak mind you, but hamburger or soft meats. His feeding tube was removed eight weeks later.

After that he began taking his Parkinson's care more seriously, taking his medications somewhat on schedule. He was able to get around much better, not walking but able to assist in moving himself. He always had a poor attitude about the disease. Depression was making him miserable. I finally spoke to his doctor about his depression and a low dosage of anti-depressant was prescribed. My husband HATES pills. It was hard enough time to get him to take the previously prescribed medications, how would I get him to take this new, additional pill?

Fortunately, or not, depending on the agenda for that day, husband was staying in bed longer in the AM. I started giving him his first Parkinson's illness medications around 6 am before he got out of bed so that if he slept in, he would not have missed his first dosage of meds. With this system in place I was able to "hide" this new pill with the others and he never found out. Still doesn't know. If he knew what it was for he would not take it. It has made a wonderful difference. He does not speak so often of doing himself in, he's much more pleasant, and he's more tolerant of taking his other pills throughout the rest of the day. He still has depressing days when mobility of any sort is nearly impossible, but we get through it.

He recently coined a new phrase "I have to carry my own casket", used when he does not receive the assistance he expects (and needs) but I am not physically able to offer him. He must participate in transferring himself from the bed to the wheelchair, from the wheelchair to the toilet, or to the stair glide, or to step out the front door to get onto his scooter. He only weighs about 145 lb. but I am not strong enough to lift him. Without his participation he is dead weight. At those times I agree with him, "Yes, you have to carry our own casket because you're too heavy for me to carry it alone. " The strength and patience come from somewhere because we do eventually get him moved.

Please visit my web site www.caregiversaide.com to see my Patent Pending Skid Seat(R)used to help reposition into a wheelchair, my Bed Sled, a reusable bed pad with handles, and related items you may find useful in caring for your loved one. Thank you.