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 www.caregiversaide.com 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.
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