[Barb Bowen]

Pray for patience and peace (and it comes every time). Monthly massage (lifting a wheelchair in and out of the car takes a toll).  Dark chocolate with a glass of red wine to wind down in the evenings. Recognize when I’m too tired to deal with life and go to bed early. Drink water when I’m feeling fuzzy headed. Forgive myself for those times I snapped at my disabled husband because I’m only human. And apologize. And when he is standing up for any other reason, go get a hug. It’s hard to get a good hug with someone in a wheelchair. Foot rubs (he’s the best!).

After getting my husband up, showered, dressed, with a brunch tray and able to remain in his recliner for a couple of hours …I put his medic alert bracelet on his wrist and go run errands. Usually go out to lunch, either by myself and read a book or with friends.  It’s important to be apart because even if you aren’t actively DOING anything for the person you are feeling “on call” all the time when you are home.

[Barb Bowen]

My husband was diagnosed in 2012, had DBS for his right hand (left side of the brain) in 2013 and for his left hand (right side of the brain) in 2014. It has been a game changer! Completely stopped the trembling the moment they turned on the transmitter.

It doesn’t have a big affect on any other symptoms, maybe a little on freezing gait or draggy foot, and some on trembling in his chin, but they told us it was mostly for the arms/hands/trembling which were his primary symptoms at that time. It works like a charm. When we have to turn it off for an EKG we see just how serious his trembling really is without DBS!

First he had to pass the intense battery of tests to qualify for the surgery at Emory, everything from a brain scan to a cognition test. The surgery itself was NINE HOURS under anesthesia. So he was really, really tired for a long time. And we didn’t understand our role in that recovery because they discharged him at noon the next day. After brain surgery! And I stupidly drove him home (a 2 hour ride) while he felt totally miserable. The second time we went back to the hotel and I tucked him into bed where he slept off and on for the next 24 hours before he felt like making the ride home.

The first time he had monster headaches for a few weeks after the surgery because they drill a hole in your skull to get the wires into your brain. After the second surgery, there were no headaches, so we aren’t really sure what was different. It was a three step process. (1) Hole in skull –  inserted the wires into his brain (used image-guided approach because his head was too big for the halo method). (2) Two weeks later they ran the wires down the back of his neck (under the skin, but you can still feel the hump of the wires) and into the front of his upper chest to attach to the transmitter that is implanted in the chest cavity. (3) After incision heals a bit, go see neurologist to turn on the transmitter. His hands stopped trembling IMMEDIATELY. I was in tears.

His hands don’t tremble at all now. And if there’s a little break-through trembling occasionally we can go up a notch (at home, with our remote) to control this. A useful tool as we face constant progression of the disease to keep him independent as long as possible. We see the neurologist twice a year for transmitter check-ups. He’s going great for a 77 year old. Mobility is another challenge, and speech and swallowing are intermittent obstacles, but we deal with it. They are not helped by DBS. But he can hold a cup of coffee, surf the Internet, brush his teeth, use an IPad, write his name, feed himself, dress himself, etc. Without DBS all of that would be out of reach, literally and figuratively.

Tips – battery transmitters last a couple of years and then have to be replaced in the chest. Outpatient surgery. Depends on how high your settings are as to how long they last. After one replacement cycle the next time we opted for rechargeable transmitters and have to hook him up like a cell phone couple times a week for an hour or two. Not convenient, but a world of difference from the trembling that would exist without it.

Good luck with your journey!

[Barb Bowen]

We have found that “bottom first” is the way to get in the car (as opposed to perching on the edge of the seat — like bend over and go deep into the seat before pulling the legs in), then swivel torso to the front pulling the legs in as we go. Often my husband will hold on to the top of the open door and I’ll hold it too so he doesn’t pull it closed too fast, but gradually let him pull it toward him as he lowers into the car seat. Then he has those inside hand holds at the top of the door frame for getting settled. Same kind of thing getting out, while I’m bracing the door for him.

For getting out of bed, we have a bedside rail (the kind that slides between the mattress and box springs) so he can use it to turn over or pull himself to the edge of the bed. Then a horizontal handicap bar on the wall within reach of him sitting on the edge of the bed, for stability standing up. Then a vertical handicap bar right next to where his wheelchair is parked so he can go from bar to bar to bar and get out of bed and into the wheelchair solo. He isn’t wheelchair bound, but it’s a safer way to ambulate after 15 falls last year…we learned a lot.