Driving Mr. Brooks

It's no secret that I like to drive. Even though I have had Parkinson's disease symptoms for well over 20 years, thanks to Medtronic DBS, I am still a good driver.

Mr. Brooks is a friend of ours. We met him when he joined the Corvette Club several years ago. He's been single all of his 85 years and he was an only child, so he has no family. He also has a great sense of humor. When asked if he has any children, he winks and says, none that I know of. 

Mr. Brooks with arm in sling at Corvette Club dinner

Mr. Brooks was a rescue crewman in the Navy, which meant he spent most of his Naval career flying high in the air in a helicopter. Just prior to his retirement, the helicopter he was in, crashed. Over the years, he's had replacement parts put in his ankles, knees and shoulders, all damaged in the crash. After a 30-year military career, he went to work as a policeman at the US Army Proving Ground here in Yuma until he totally retired about 20 years ago. 

In the years that we have known Mr. Brooks, he's had to have all of his replacement joints replaced again. Usually, Mr. Brooks would drive himself to the Veterans Administration (VA) Hospital in Tucson, Arizona (250 miles away) and they would replace the part, then keep him there until he was well enough to drive himself back home. It seems like he's had something in a brace, cast or sling the entire time we have known him. Sometimes we would pick him up in my car and take him to the Corvette Club functions, so he was used to my driving. 

YumaBev's Sonic

In the Fall of 2016, Mr. Brooks was having a problem with his left ankle and it wasn't something the VA could fix. It would have to be outsourced, and he would need a driver. He asked me if I would be willing to drive him to a hospital in Tucson and drive him back home the next day. He would gladly pay for my hotel room. My Wonderful Husband and I said yes, as long as his surgery date didn't interfere with my own Tucson appointments. 

As it turned out, his surgery was scheduled for the same day as my appointment with Dr. Bradley. He needed to be at his hospital by 5 AM on Monday and my appointment wasn't until 1 PM. I was also scheduled to speak to the University of Arizona Medical School students early Tuesday morning and he wouldn't be released before noon, so all would work out just fine.

There was a small problem though. It was Thanksgiving weekend and there were no reasonably priced hotels to be found in Tucson and we'd need two rooms on Sunday night and one for Monday night. I contacted my Parkie friends Ken and Lisa and asked if all three of us could please stay at their Tucson home. I knew they were out of town for the holiday and Wonderful Hubby and I had stayed at their house in the past.

Luckily, they said yes. So, we packed our bags and I drove my car into Yuma to pick up Mr. Brooks, and we headed for Tucson. We got the keys to our friends house from their neighbor and then drove the route to hospital. I didn't want to be trying to find my way in the early morning darkness. We ate what Mr. Brooks jokingly referred to as his last supper, watched some football on TV and retired to our rooms early. 

I set the alarm for 4 AM and woke to heavy rain and very cold temperatures. Fortunately, we had parked in the garage. My Wonderful Husband hates hospitals, so I left him sleeping. Mr. Brooks was ready early, so I drove slowly to the hospital. I was glad we did a trial run in the daylight the day before. Everything looked different in the darkness and rain. I stayed with Mr. Brooks until they hauled him away on a gurney, made sure the staff had my cell phone number and that I had permission to check on him. Then I drove back to the house and went back to sleep.

After my appointment with my Parkinson's specialist and a quick chat with my DBS neurosurgeon Dr. Norton (they work at the same place), Wonderful Hubby and I went to see Mr. Brooks at his hospital. We walked into his room to find him crawling across the floor from the bathroom. He wasn't able to reach the nurse call button, the urinal or his crutches and he said he had to go. I scolded him and we called a nurse to help get him back in bed. And then I scolded the nursing staff as well. We stayed until they brought him dinner and then headed back to the house, stopping for something to eat on the way.

Tuesday morning, we returned the house keys to the neighbor. I went to speak to the Medical School students, then we drove to the hospital, picked up Mr. Brooks and headed back to Yuma. We made sure he was settled in at his house and came home.

This was the first of many trips to Tucson or Phoenix that I would make with Mr. Brooks. After that first trip, Mr. Brooks would drive one of his cars (he has several) to my house and then hand me the keys and I'd drive the rest of the way. Mr. Brooks always tells the staff at the Doctors office or Hospital that I'm his driver. "Doesn't everyone have a pretty blonde chauffeur?" Mr. Brooks says. When they ask me who I REALLY am, I say I'm his chauffeur. 

This is one of Mr. Brooks cars 

As we are cruising along, Mr. Brooks tells stories about his Naval career. He was part of the ocean pick-up crew for one of the Apollo space missions. He did mountain rescues in the Alps and while there, he travelled all over Europe in an Austin-Healey. He's lived an adventurous life and is still enjoying every day.

Mr. Brooks newest car, and YES, I have driven it too!

I know he must be in pain every day and yet he never complains. We just got back from an overnight stay for another early morning surgery on his left ankle. They had to take a screw out because it was bulging through the side of his calf. This was the third time Mr. Brooks had a 'Screw loose!' as he likes to tell people. I hope this is the last of his replace the replacements surgery and that he's finally done.   

It takes a lot of planning to make these trips. I make sure I know exactly where I am going and memorize alternate routes, just in case. I'm glad I can still drive Mr. Brooks. 


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YumaBev Plays Doctor/Patient

Scott Sherman, MD, PhD invited me speak to the University of Arizona Medical School students again. This would be my third visit. Maybe I should've asked for course credits or at least a U of A shirt? Just kidding.                        

Dr. Sherman wanted to try something different this time. The students would have to use their Clinical Reasoning skills to come up with possible diagnoses, what tests to order to confirm/rule out their theory and how to justify the tests ordered. These were first year students who were ALREADY having to think "Will those pesky insurance companies pay for this test?"          

I would start at the beginning of my Parkinson's symptoms, and gradually add more, until someone guessed correctly. I would try to "present" just like it happened in real time. After each symptom, the students would ask questions and try to come up with diagnoses. By the way, this would not have been possible prior to my DBS Surgery as my symptoms would have been too obvious.

In order to not give the students any clues, the class was being headed by Alice Min, MD, PhD, who teaches Emergency Medicine. Also in attendance were Paul St. John, PhD (Cellular & Molecular Medicine and the Clinical Reasoning course director) and Todd Vanderah, PhD (Anesthesiology, Pharmacology, Neurosciences) and of course Dr. Sherman. My favorite Medtronic rep, Adam, was also there, wearing a Medtronic emblazoned polo shirt, but the students would have probably assumed Cardiology, if they even noticed his shirt. 

Dr. Sherman (Neurology and Physiology) introduced me simply as Bev from Yuma who has come to tell you her story. The classroom was full and the faculty had to stand as there were no seats. My Wonderful Husband was in the corner, behind the podium, so he was only able to get this one photo for you. 

                                

I started off by saying, "You have to imagine me as a 37 year old." 

Dr. Sherman quipped, "Oh, 2 years ago?" (Who said Doctors don't have a sense of humor?)

I replied, "Good one Doc, but you could have said 10 years from now." 

This caused the entire room to burst out laughing.

I told them about my job as a bank teller working part time in the drive thru, reaching up to grab tubes and how intermittent pain began in the area between my right scapula and my spine. The students asked me to describe the pain (hot, burning) and what tests were done. I said x-rays and a referral to chiropractor and ortho. They came up with Repetitive Stress or Nerve Impingement as possible diagnoses. I told them the x-rays were normal. Ortho prescribed physical therapy, which I did with no improvement. Chiro did full spinal x-rays, several adjustments and used a TENS unit which provided no lasting relief. 

Three years go by, I had changed to an office type job, and one day I could no longer double click my computer mouse with my right index finger (or any of my right hand fingers.) They asked about numbness or tingling (none), asked if I had right side weakness (no). At this point, they were still thinking nerve or back problem. 

I told them that a few months later, I began to have difficulty writing. My hand felt almost like writer's cramp. I asked the students if they still wrote notes by hand, which elicited another round of laughter. 

They asked about tremors (there weren't any then, so I said no). A student suggested it could be Dystonia, which surprised both me and Sherman. When questioned as to why she thought so, the student didn't have an answer. 

I told them that several months later my right hand began to shake, but only when I tried to use it. They asked me to demonstrate, so I did. A student asked if I had a loss of sense of smell (no) or if my writing had gotten smaller. I hadn't noticed it had, so I said no. Possible diagnosis of Essential Tremor was brought up.  

Several months later I was referred to another Ortho, where x-rays and T-spine MRI were ordered (with the area on my back highlighted with markers.) Both were negative and I was referred to a Back Specialist who said "I have a waiting room full of people that I know exactly what is wrong. I don't have the time to figure out what your problem is." He referred me to Pain Management, who gave me some type of shot in that spot on my back. The shot did nothing. They asked about Depression or Mood changes (no). One asked if any Dr. had done any finger to thumb or flipping hands palm up/palm down tests (no).

A year or so goes by and I wake up one morning and can't move my neck without intense pain. My primary Dr. prescribes muscle relaxers and orders a Brain and C-spine MRI (since now he had a good enough reason to satisfy the insurance.) Both come back negative. I am referred to a Neurologist who diagnoses me with Essential Tremor, and prescribes propranolol. By this time, my Father had been diagnosed with Parkinson's, so I ask if I could have it also. I am told, absolutely not. 

The tremors are under control, but my symptoms slowly worsen. I end up with a frozen right shoulder, so it's back to a third Ortho, who gives me a cortisone shot and exercises to do at home. My right arm is always curled up; my right hand is in a fist. 
                                        

My right foot thuds down when I walk; my right arm doesn't swing when I walk. I feel tense all the time and startle easily. My movements on my right side become stiffer and slower and worsen daily. Within a few years, I can barely move at all. I need help in dressing, getting up from sitting, cutting my food. 

At this point, several shout out Parkinson's! And we tell them they are correct. One student asked if I ever had a DaTscan. I said no (it wasn't approved yet.) 

I explain how I finally got diagnosed (see The Letter) by Dr. Zonis, who did his Neurology residency at the University of Arizona! What treatments were tried, the side effects of the various medications and that three years ago, I had DBS surgery. 

A student asked how back pain and a frozen shoulder were related to Parkinson's? Dr. Sherman didn't really have an answer, other than to say it was a common presentation in Young Onset PD and what most often caused them to seek medical attention. I told the class that I thought it was a combination of the rigidity and constant muscle tension (dystonia) putting abnormal strain on one side of the body. 

I said, "No matter what type of medical professional you become, you will run into people with Parkinson's, so if the symptoms don't have a clinical reason for them, THINK NEUROLOGICAL. Don't be afraid to think outside the box." 

Dr. Sherman thanked me for taking time to come and speak and I got an enthusiastic round of applause from the class. 

Several students came up to me, after class, to say they had relatives with Parkinson's or to ask more questions. I gave copies of my book to Dr. Min and St. John, who both seemed surprised that I had written a book. I asked Dr. Sherman if I could possibly speak to his Neurology Residents one day. He said he'd work on it!  

Right after class, I had my check-up with Dr. Sherman and my Wonderful Husband and I headed back to sunny Yuma.  

I had a wonderful time playing "patient" with these future Doctors and I hope I left a lasting impression on each one of them.

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A Parkie Speaks to Future Doctors

My phone rings and it is Adam, the Medtronic DBS Therapy representative from Tucson, Arizona. I met Adam during my DBS surgery and he was with me when I had the final scalp surgery a few months ago. I joke with him about only recognizing him when he is wearing a surgical mask. He appreciates my warped sense of humor. He has called to ask if I'd be willing to come to Tucson speak to a class of first year medical students about living with Parkinson's disease? I say YES! He asks if he may give my phone number to Scott Sherman, MD, PhD, who is the Associate Professor of Neurology at the University of Arizona. Again I say YES. He laughs and says he knew I would say yes and that he'll be back in touch with me after I hear from Dr. Sherman.  

A few weeks later, Dr. Sherman calls me. We talk about my Parkinson's, my DBS and his medical school students. He asks if I will be nervous speaking to a class full of students and I assure him that when it comes to public speaking, I am a pro. I ask him if I could become a patient of his and have him take a look at my DBS settings. I am convinced the settings are causing my mood problems. He says yes and will set up an appointment for the same day I speak to his class. He says either he or Adam will be back in touch to make all the arrangements.

A few days later, I hear from Adam and Dr. Sherman. Adam has made hotel reservations for me and my Wonderful Husband and would like to take us to dinner the night before I speak. Dr. Sherman has made an appointment for me right after lunch on the same day I speak to his students. He warns me his class starts at 9 am and he would like me there at 8:30 am. I say no problem, I'm up early.

My Wonderful Husband and I drive over to Tucson, get checked in to our hotel and a while later, Adam and his beautiful wife Liz, pick us up and treat us to a fantastic dinner at El Corral. He drops us off back at our hotel around 10 pm, and says he'll pick us up at 7 am. Seven? Yes, he says, seven. Dr. Sherman wants to meet me before his first classes start, which is 8 am. So, we set the alarm and go to sleep.

Liz, YumaBev and Adam

Adam is already waiting outside at 6:45 am, doesn't he ever sleep? We meet with Dr. Sherman in the campus coffee shop and everyone except me has coffee (I don't like coffee.) I have a big cup of ice water and a cinnamon roll. We visit for awhile and then Dr. Sherman heads off to teach his 8 am class. It amazes me how down to earth Dr. Sherman is. He's like the guy next door (only a lot more educated). The three of us visit and drink our drinks until it's time to find our way to the classroom. I find the tech guy and make sure my PowerPoint and videos will play and the mic is set for my voice. 

Adam and YumaBev waiting for class to start

The class starts with Dr. Sherman speaking about the medical basics of Parkinson's disease and then it's my turn. Within five minutes, I have the whole class laughing, including Dr. Sherman and Adam. I do my PowerPoint and show the class my before DBS video and then offer to answer any questions. Dozens of hands go up and I answer questions until time runs out and the students have to leave for their next class. After class, I sold a few books, mostly to students who had relatives with Parkinson's. My Wonderful Husband was supposed to be taking pictures, but he got too engrossed in my speech (even though he's heard it before) and forgets. Adam, who was sitting next to Dr. Sherman, tells me afterwards, that Dr. Sherman kept making comments like, "She's right" and "She's funny" and "She really knows about Parkinson's." 

Dr. Sherman's medical students

Dr. Sherman thanked me and headed off to his next class. Adam drove us back to the hotel and headed off to work. We checked out, ate lunch and went to Sherman's medical office for my appointment. I gave him a signed copy of my Parkinson's Humor book and he bought a extra copy for his staff. Then we talked about me and my problems and he adjusted my DBS, giving me a new "A" setting to try for my mood problems. 

I told him that I'd really love to speak to his neurology residents. He said he'd think about it. He thanked me again for speaking and we left and drove back to Yuma. 

Dr Sherman and YumaBev

I tried the new "A" setting and my mood changed back to the Happy Parkie I used to be. The difference was amazing! Come to think of it, so is Dr. Sherman.


My favorite quote of the day? Dr. Sherman, "Well, you have either just convinced them all to become neurologists or scared them so they won't!" Hopefully I encouraged them to become more than neurologists, hopefully, I encouraged them to become Movement Disorder Specialists!