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Doctor's Visits

Friday May 29, 2015

A caregiver's life includes many doctor's visits. There's the primary of course, then there are all the specialists. In the past, this blog has discussed how to choose a doctor. (The most important part of that is choosing one who will listen to YOU, the person who is directly involved in your loved one's care!) This blog is about how to get the most out of each doctor’s visit.

Getting an appointment

Besides the regular checkups, when should you be asking to see the doctor? What do you do if you feel your loved one needs to see a doctor sooner than they can give you an appointment? You can always go into the hospital ER, but that isn't always a good choice for someone with a Lewy body related disorder, that is Parkinson's disease (PD) or Lewy Body Dementia (LBD). You really need someone who is familiar with your loved one's unique responses to drugs and other issues.

Barry was awake most of the night and sleeping during the day. He was depressed. Darla called their primary care physician but the earliest appointment was in two weeks. She asked to speak to a nurse who told her nothing could be done until the doctor saw him. Darla didn't accept this. She was polite, and voiced her concern about having to wait so long. "I'll see what I can do and call you back," the nurse finally said. She called back in an hour with an appointment in two days.

Caregivers have to step up and make themselves heard. You will be surprised to find that usually, you WILL get results.

Preparation

Your visit will always be better if you come prepared. What do you want to ask about? What are the specific symptoms and behaviors? This is where your daily journal comes in. It doesn't need to be lengthy. In fact, you can use a calendar to jot down pertinent information in a few words, along with the time of day.

Darla used her calendar to keep track of when Barry got up and when he went back to bed (as best she could remember in the morning), and the times he napped during the day. This record, along with a list of the drugs he was taking and their times provided his doctor with the information he needed to adjust his medications so that he slept more at night and less during the day. "He is less depressed too," Darla reported happily.

communicating the problem

Doctors are busy, with little time between appointments. Keeping a daily journal is great for helping the caregiver to collect information, but it needs to be boiled down into a more easy to read format before presenting it to the doctor. Darla's calendar list of sleep behavior worked better than a written out journal would have. One doctor has asked Darla to use a 3x5 card to write out their chief complaint, with as few words as possible, while still being clear about what the problem is.

 Darla's card read, "Barry wakes up and roams around most of the night. Then he sleeps most of the day." This gave the doctor a jump start towards knowing exactly what issue was bothering Darla and Barry most.

working with specialists

Don't expect your internist, podiatrist, cardiologist or sleep specialist to know about symptoms unique to PD/LBD disorders, even those related to their specialties. They may, but don't expect it. A doctor will make the best diagnosis they can and then move on to treat that issue. At that point, they may stop looking for clues that might connect it with another disorder.

Prior to seeing a dementia specialist, Barry saw a sleep specialist for his disrupted sleep cycle. The specialist diagnosed sleep apnea, based on Barry's thrashing of limbs while asleep. He prescribed a mask for breathing assistance. Barry's cognitive problems were severe enough that he was unable to relate the unfamiliar mask with better sleep and refused to leave it on.

While sleep apnea can occur with anyone, REM Sleep Behavior Disorder (RBD or Active Dreams), is a symptom unique to PD/LBD. A doctor familiar with these would have considered active dreams first. Not only is RBD more likely, but its treatment will be easier for Barry to accept.

drug sensitivity

Don't expect any doctor not specializing in dementia to know about the drug sensitivity that gets more likely as a person with PD begins to have more cognitive symptoms. Always gently remind a prescribing doctor about the possibility of these sensitivities and tell him/her of any specific issues. They will usually respond with a safer alternative.

The sleep specialist offered to prescribe a sleep aid for Barry when he wasn't able to wear the sleep apnea mask. Darla reminded him since Barry was beginning to develop the cognitive symptoms of LBD, she was concerned that he would be sensitive to sleeping pills. She went on to say that she knew he had reacted poorly to Haldol in the past. "This isn't nearly as strong as Haldol," the doctor said, "but let's try melatonin instead. Barry should be able tolerate it." With Darla's reminder, the doctor remembered about the sensitivity issues and changed his prescription.

your opinion matters!

For the PD/LBD caregiver, doctors visits are usually a cooperative experience. You know your loved one best, while the doctor has the specialized training needed for your loved one's treatment. Don't be shy about speaking up, voicing your concerns and asking questions. If a doctor asks your opinion about various treatments, be willing to share honest impressions--and rejoice that you have a doctor who is willing to include you in the treatment team. Your loved one is likely getting the best possible treatment!

 

Helen Whitworth, MS, BSNHelen Whitworth, MS, BSN
NWPF Blogger

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