How is Patrick Doing, #9 - Part I: Being Mobile

Heading out!

The ALS progression continues to challenge us. We do our best to adapt and keep up with the changes. There are two major issues we are currently working on. First, is changing the power chair controls from hand control to head control. Second, is managing the changes in the bulbar region (mouth, throat & facial muscles). This blog will be split into two parts with this part being devoted to wheelchair changes.

Power Chair Controls

Patrick has lost most control over his hands and this requires us to find a new way for him to control his power chair. We spent over three hours in the wheelchair "shop" this past week switching out the hand controls for head controls, as well as changing the arm wrests to make for a more comfortable ride.

Additionally, we added attendant controls in the back. Sometimes I think I'm sort of naive in the way I look at things because it just didn't occur to me how difficult this change was going to be and that I would have to be more active in driving the power chair. However, I think the phrase, "ignorance is bliss" is true in this case. If I really had given thought to this change it would have just caused stress so frankly being a bit ignorant delayed my anxiety. If you've never driven a power chair let me be the first to tell you - it's not easy... there are six wheels that pivot so you have to make sure to get them all going in the right direction. 

On my side, I'm starting to feel more comfortable but I'm still stressed getting him in and out of the van on the ramp or on/off the lift... and I don't think he's thrilled with me being in charge of these activities either. In my defense, he hasn't taken a nose dive or ran into any walls as of the writing of this blog, but I do go VERY slowly. The lift in the house is another scary area, but we are continuing to practice and so far no one has made the two-story drop. 

On Patrick's side, he has the challenge of learning to control the chair with his head. Could you imagine having to control something with your head or eyes?? Well, in Patrick's case he is absolutely amazing. Yes, he has run into walls and doors. But, he's getting better all the time. There are moments in this journey when I have to say the man is super amazing. His determination to make things work, adapt and keep calm is simply inspirational. And in all honesty, he does it with tremendous grace. So, I keep thinking... if he can do it with his head, I can certainly do the same with the joy stick. 

He did a pretty nasty run into the wall the other day and removed a good chunk of paint. After this incident we were in the van and he kept trying to tell me something. Unfortunately, my interpretation skills while driving are not too good. It sounded like he was saying he was in pain. I kept asking where, your leg, your knee, your foot. I could tell I was frustrated and finally I realized he wasn't saying "pain," it was "paint" - he was stressed out over the ding in the wall and wanted me to get paint... funny guy.

Do you remember the old Tom Petty song, "Learning to Fly"? I loved that song when it came out and it still gets stuck in my head every now and again. With Patrick's recent shift from using his hand to using his head, this song really works for me.

"I'm learning to fly, but I ain't got wings, coming down is the hardest thing."

A strange side note on Patrick's head control. It makes a beep when he does various commands.  Well, this beep noise makes Jake CRAZY. So, in addition to Patrick having the challenge of learning to drive with his head he has to do it with the dog running around like a nut case. 

Here is a video of Patrick practicing driving on the bike trail next to our house:

If you're joining us at the Walk to Defeat ALS next weekend (and I hope you are) please give Patrick a wide berth or be prepared to jump quickly!! :) If you have not yet registered for the walk it's not too late, here is a link to the Team Timmons page: http://websac.alsa.org/goto/Timmons

Happy Fall!