Saturday, August 22, 2009

This is how his Parkinson's disease symptoms progressed in order of occurrence.

In 1998 he was diagnosed with Parkinson's Disease. First symptoms were shaking left leg, "pill rolling" with fingers.

1998-99-2000 he was still able to walk on his own without assistance.

2001, 02, 03 were adjustment years, getting used to the fact of needing assistance to walk and needing a wheelchair. When he was going through this period of adjusting to being dependent on wheelchair mobility, accepting and working with his new limitations, I was younger, somewhat stronger, and able to give more of my strength. As his strength waned, mine increased. I was discovering and inventing ways to care for him.

2004 I learned how to do a wheelchair transfer into and out of bed, etc. I learned how to lift transfer with a gait belt, and learned how to use the Hoyer lift. Using these safe patient handling methods I would not injure him or myself. He went for Physical Therapy which helped some but he would not "do the homework". Fortunately through County Senior Services Area Agency on Aging, I was able to get a CNA to come in to help me care for him five days a week. Having help made life a little easier and he enjoyed the new company.

2005 and 06, as his condition got worse, there were days he never got out of bed. Early 2006 we tried speech therapy. He could hardly talk and got angry that I could not understand him. He would not take his meds. All this came to a head in winter 2006 when he wound up in the hospital. That period of time while he was going downhill, getting weaker, losing muscle control, losing ability to communicate, was absolutely the worst.

2007 He recovers from the hospital stay and swears he will never be taken to the hospital again! He re-starts taking his medications. His progress in recovery in surprising. But he is still totally dependent on the wheelchair. Dec 4, 2007 I applied for a provisional patent of the Skid Seat repositioning device.

2008-09 He is generally better since taking his medications. Dealing with not knowing how mobile he will be each day takes its tole on both of us. Wants to do hobbies, angry not able to do so without assistance, getting into or out of the car sometimes a nightmare.

I'm considering using the Hoyer lift to get him into the car. Question is how do I get him out at our destination. Haul the Hoyer on the Scooter lift mounted on the back of the car? Needs more consideration. I've priced wheelchair accessible vans that would let us put him into the vehicle still seated on the wheelchair. Prices even used are way beyond our reach right now. So we get by with physically hoisting him bodily into the car with some assistance from him. Days he is not as mobile, we just don't go anywhere.

Time line:
1998 diagnosed in fall of 98

1999 walking

2000 walking

2001 walking being affected

2002 He needed wheelchair to get around house, restless legs all day and into night, some nights only 2-3 hours sleep

2003 June became eligible for Pa Dept of Public Welfare Senior Services PDA Bridge Waiver

2004 Physical therapy , received instruction in proper transfer methods, less walking, part time CNA assistance, home modifications, scooter. I had surgery in October and was not allowed to lift anything for several days, so was not able to assist my husband. The Waiver program provided the necessary CNAs for 24 hour care for him for 5 days.

2005 More therapy , less walking

2006 Speech therapy early 06, Dec 28 into hospital for dehydration for 5 days

2007 Feeding tube removed February, taking meds on schedule, great improvement

2008 March - Anti-depressant started, October we went trailer camping in the Poconos for 2 weeks, he was determined to go; confusion, hallucinations, slurred speech, coming and going (meds need frequent adjustment)

2009 Hallucinations occur frequently- I try to adjust meds. General weakness for longer periods of time. Cannot help lift himself for transfers.

He has ups and downs from day to day. He is taking his meds, not willingly - but taking them, and he's doing better. I learned some tricks during the tough times. Some I use every day , others are in memory for use later. In future articles I'll be sharing some of my tricks with you.

Please visit my web site to see my Patent Pending Skid Seat(R), my reusable bed pad and related items you may find useful in caring for your loved one. Thank you.

Thursday, August 6, 2009

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 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.