Two years ago, my father started feeling tingling in his feet. The doctors didn’t seem too concerned about it, and it was basically ignored. Slowly over the next 2 years, the tingling spread up his legs and turned into numbness. My dad started falling down a lot. He thought he was just getting older and clumsy. Last summer, he started using a walker and one of his doctors told him that physiotherapy was the answer. In September it got so bad that couldn’t even walk anymore, and with the help of a neighbour, he finally went to the ER.
That is when he was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), an autoimmune neurological disorder where the body’s immune system attacks the nerve cells. We were very pleased when the doctors told him there was a treatment, and that he would be walking in 6 months. He was also told he would be transferred to a rehab facility for physiotherapy after a few weeks of treatment.
That did not happen. My dad got worse. It spread to his fingers, hands, and arms. He could not move anything except his head. His hands were in a permanent fist. He was even told that if it spread to his lungs, he would be put on life support, and to make sure he had a Power of Attorney assigned. He already did (it’s me). Needless to say, we were all a bit freaked out about this.
My father could not feed himself, often waiting over an hour for a nurse to come and feed him after his meals arrived. He could not brush his teeth, or shave, or brush his hair. He could hardly even push the buzzer to call for a nurse. He had the nurses use an elastic band to attach the buzzer to his hand…he’s pretty clever. I visited him weekly, and I would shave him, feed him his lunch, and take him for walks in a wheelchair around the hospital and outside. At first, my mother would visit him twice a day to feed him lunch and dinner. She could not keep it up though, since she herself has arthritis throughout her body, a bad hip, and a crushed vertebrae due to arthritis.
My dad was put into “contact isolation” for a few months. He couldn’t leave his room, and everyone who entered had to wear a gown and gloves.
Slowly, over several months, my dad started to regain some movement in his hands and arms. The first time he held my mom’s hand made them both cry. Then he was able to scratch his nose. Finally, in January, he was able to feed himself again. It wasn’t easy, but he was determined to do everything himself.
At that time, the neurologist told my dad that the treatments weren’t going to do any more for him and that they would stop. My dad had heard about another treatment from my online research. He wanted to try a plasma exchange, where they remove the plasma from the blood, resulting in the removal of antibodies that were attacking the nerves. After much debate between various doctors, he was allowed to receive this treatment. What a difference we’ve seen in the few weeks since the plasma exchange! My dad can not only feed himself, he can shave, brush his teeth, roll over in bed, and lift his knees.
During this time, my mother had been preparing for a hip replacement, which she had in February…in the same hospital where my dad was. He came down to see her before she checked in on the morning of her surgery. It was the first time I had seen them together in months.
I stayed with my dad all day while my mom was in surgery. We watched the Canadian women’s hockey team win the gold medal at the Sochi Olympics, and my dad enjoyed a beer while watching Coach’s Corner 🙂
My mom needed somewhere to go to recover after her surgery. We agreed she should stay with me, and I would take a month off from work to care for her. My dining room (and my home studio) has now been converted into a bedroom for my mother.
My kids sure are loving having Grandma live with us.
Due to her arthritis, my mom’s recovery has been slow but she is doing her best. Two days ago, my dad was discharged from the hospital and is now undergoing physiotherapy at a rehab facility. He is doing great and the staff there are very pleased with his progress so far. We don’t know how long it will be until he returns home, or when and if he will ever walk again. But if you know my dad, you know he is one determined guy.