Adjusting to the diagnosis – 4/6/11 webinar notes

If anyone else attended this webinar today, I’d be interested in receiving your comments and any notes you took (especially in places where I missed things). I thought the middle part of the webinar was especially good. If you missed it, here are my notes. And CurePSP staff indicated that the recording of this webinar should be available online ( by 4/8/11.

Early Stages of Diagnosis: A Family Guide for PSP, CBD & MSA — the process of adjusting to the diagnosis, and important steps for patients and families to take during the early stages of the diseases

Webinar Speaker: Trish Caruana, MSW, VP of Programs and Education at CurePSP

4/6/11 (rescheduled to this day from 3/30)

* Provide a brief overview of PSP, CBD, and MSA
* Discuss the process of being diagnosed
* Review the initial adjustment to the diagnosis
* Outline the steps to take to ensure the best overall care
* Develop a framework to maintain health

What is PSP?
* Rare neurodegenerative brain disease (5-6 per 100K – “incidence.” Robin’s note: she means “prevalence”)
* Problems with stiffness, balance and vision, speech and swallowing
* Changes in personality
* Cognitive changes

What is CBD?
* Similar to PSP (balance, vision, speech and swallowing)
* Rare: estimated 2K-3K in the US
* Difficulty generating and articulating speech
* Stiffness, jerkiness, slowness, and clumsiness either in the upper or lower extremities
* Asymmetric onset of symptoms
* Memory or behavior problems
* Many of these symptoms may not be appearing now, if you are in the early diagnosis phase

What is MSA:
* Also an atypical parkinsonian disease
* Involuntary functions are affected such as blood pressure, heart rate, actions of the intestines and bladder and breathing activity
* OH
* Urinary incontinence and constipation
* Impaired speech and swallowing
* Inability to sweat
* Sleep apnea and sleep disturbance
* Waving hand movements and staggering gait

Someone initially given this info is going to be taking in a lot of info and trying to figure out how their lives will change.

The process of being diagnosed
Buddhist saying: “If you are facing the right direction, all you need to do is keep walking.”
Getting a diagnosis affects everyone psychologically

Misconceptions about diagnosis
Our simplistic view: Symptoms + Evaluation = Diagnosis

Finding out what’s really going wrong
Medical response: Evaluation; treating symptoms; referrals to other specialists; new and worsening symtoms; no diagnosis given; some diagnosis given; correct diagnosis
Patient and family reactions: Hope for answers; poor response to treatments; frustration; fear; confusion; the power of “naming”; disbelief; panic (what can we do? what info is there? assumption is often that there is one thing that can be done)

Initial adjustments to the diagnosis on the part of the patient and family:
* intellectual (making sense of info; paring down the info)
* physical (probably the patient has already made physical adjustments to the falls, for example)
* psychological (our sense of who we are)
* emotional (people feel that the illness defines them)
* social (people may drop out of activities they enjoy due to fatigue or depression)
* financial (healthcare costs, job, career, retirement)
* life plans (what were my future plans? time for reassessment of these plans)
* spiritual/religious

It’s natural for patients to think about many of these things on their own. We hope they have a good support system.

It’s natural for people to question the diagnosis.

After diagnosis: denial, anger, bargaining, depression, acceptance
These are the five stages of grief (and dealing with loss) by Elizabeth Kubler-Ross

The most important thing about acceptance is that it can lead to taking action. Taking action has four components:
1- Education: disease; current treatment; research; organizations; experts. (“Can’t take action until you know these things.”)
2- Medical: neurologist; movement disorder specialists (“usually this is a neurologist but sometimes it can be a psychologist or nurse practitioner.” Robin’s note – a psychologist cannot be a movement disorder specialist!); primary care physician (who can “synthesize info”); rehab specialists; study sites
3- Resources (“information in the community that may be helpful”): organizations (including Parkinson’s Disease support groups); adaptive equipment; home health; transportation
4- Social Supports: family; extended family; friends; colleagues; church/synagogue; support groups

Creating a framework for maintaining the best health possible for yourself and your family

Continuing to move forward if you have the disease:
* Ask for help from medical providers. Come prepared to appointments with your questions.
* Acknowledge and accept your own thoughts and feelings
* Share your concerns and emotions with someone close to you
* Consider professional counseling/group support
* Ask for help from your family and friends
* Stay in touch with people you love and help them understand the disease
* Remember what helped you cope with other difficult situations in your life and draw from those experiences
* Maintain daily routines as much as possible
* Enjoy the simple things
* Focus on what you can control
* Find courage and direction in your faith or belief system

If your loved one has the disease:
* Recognize it’s normal to feel a variety of emotions
* Maintain and/or start new routines that promote your physical and mental health. Don’t get out of balance by spending 7×24 with your family member with the disease.
* Create a support system
* Continue to learn as much as you can — connect with others going through the challenges of the disease and share ideas
* Accept that you are human

CurePSP can help
* Visit our website
* Request or download our educational materials
* Read our newsletters (Robin’s note: I have not seen a CurePSP newsletter in perhaps a year. Even the old issues are no longer posted on the CurePSP website.)
* Listen to our ongoing webinars
* Attend our family conferences
* Contact us

Question & Answer Period: (all answers are given by Trish)

Robin’s Comment: The #s are prevalence numbers, not incidence #s.

Trish’s Reply: We don’t have good numbers on these diseases. Hopefully our numbers will improve with research.

Robin’s Comment: Perhaps you can address denial. Many caregivers comment that their family members are in denial. Is this a problem?

Trish’s Reply: It’s a defense mechanism. It can serve a good purpose. It can be seen as a stubbornness to stay involved in life. But it can also lead people to think that they don’t need help, and they aren’t open to talking.

Never advisable to take someone’s defense mechanism away unless you have something equally effective to substitute for it.

Question: To what extent are medical students exposed to these diseases?

Answer: When PD is mentioned in the curriculum, it gets short shrift. Therefore, one can imagine that these diseases, as a subset, are not well-covered. It would be hard to find people to interview with the disease.

Comment: PT is helpful.

Trish’s Comment: CurePSP is doing some advocacy to help insure that PT is covered over the course of the disease.

Question: Husband with CBD has depression but isn’t taking anti-depressant.

Answer: Medication can make symptoms worse and can have side effects. Even a positive reaction can be short-lived. Hopefully a decision about taking an anti-depressant is made with a neurologist or psychiatrist. There are many kinds of anti-depressants. Raise this issue with the care provider. Perhaps ask for a psychiatry referral.

Question: What about erratic behaviors?

Answer: People can be impulsive. Example: someone with gait problems but they get up to walk on their own. No one way to help with these impulsive behaviors.

Try to assess whether there are times that make these behaviors worse. Then come up with a plan for the person.