These are the notes I took during the webinar tonight with Dan Brooks, diagnosed with Parkinson’s Plus. Dan’s wife Karrie was also on hand to answer questions. I thought this webinar was wonderful.
I’ve divided Dan’s presentation into several parts — Symptoms and Treatment, Four Disorders, and Making the Most of Life. After the presentation is the Q&A. I slightly changed the order of the questions and answers below. I could hear nothing that the webinar moderator said which meant that I couldn’t hear some of the questions. Many of the answers given can be taken more generally than one specific disorder.
Excluded in these notes are the introductory remarks made by the webinar moderator Larry Schenker, Janet’s Edmunson’s remarks about CurePSP’s vision and mission, and Kathleen Speca’s remarks about fundraising for CurePSP.
Here are my notes. If you took notes, please share!
INTRODUCTION: by Karrie Brooks
Dan’s PSP symptoms began in 2005
The Dan of today is very different to look at and to talk to then the Dan of 5 years ago. However, he is still the Dan Karrie loves and admires.
PRESENTATION: “Making the Most of Life with a Parkinson-Plus Syndrome” by Dan Brooks
Married almost 30 years
Three adult sons
Career included roles as principal and assistant superintendent in public schools
Guitarist, singer, songwriter
Karrie is 50. Dan is 54.
One goal of this webinar is to give encouragement and practical ideas for keeping your life moving forward, with purpose
SYMPTOMS AND TREATMENT
Dan’s diagnosis:
* extrapyramidal disorder
* involuntary movement disorder
* Parkinson-Plus syndrome
Dan’s symptoms:
* walking gait, coordination and balance issues
* swallowing difficulty
* speech troubles
* cognitive disorder
* eye movement problems
* trunk movement and head tremors
* arm, hand and leg tremors
* dystonic movements
* autonomic signs
* depression
June 2005: noticed a head tremor and hands trembling; stiffness in feet and ankles when rising from chair; eye pain; light sensitivity; sway and balance problems when standing
Fall 2005, Neurologist visit: MRI with no significant findings; blood tests; prescribed levodopa/carbidopa and eventually added Comtan; helped to calm head tremor and left arm trembling for up to two hours
February 2006: went out on disability – stopped working as administrator; walked with a cane; speech was worsening; eye movements – turning up (under lids) and crossed; trouble coordinating walking gait; slowed responses to questions; stopped driving because of balance, coordinator, and reflex issues in addition to tremors that ran through my whole body
More diagnostic tests: PET scan showed mild atrophy in left frontal lobe; spinal tap; neuropsychologist did cognitive testing revealed mild cognitive decline affecting short term memory and language, with a potential for dementia
May 2006: permanent disability; no more driving; Parkinson-Plus syndrome; possible PSP or Shy Drager (MSA)
Today: using a wheelchair more and more for trips to store; scooter for longer trips; walking is increasingly difficult; speech is soft, monotone at times; face masked and makes Dan look angry; cognitive difficulties; balance trouble; body temperature low; constipation; frequent urination urge; light headed upon standing
Current medications: carbo/levo 25/100; Cogentin 1mg 2/day; Azilect 1mg 1/day; Seroquel XR 150mg 1/day; Vesicare
FOUR DISORDERS
MSA subtypes: Shy Drager (autonomic difficulty, including orthostatic hypotension); SND or MSA-P (tremors, balance, rigidity, speech, parkinsonism); OPCA or MSA-C (balance, ataxia, eye movements, slurred speech)
PSP: loss of balance; eye movement problems; speech impairment; swallowing problems; depression
CBD: symptoms often appear on one side of body; alien limb; depression; emotional changes
LBD: symptoms similar to PD and AD; repeated visual hallucinations; varying levels of alertness; depression; delusional thoughts
[Robin’s note: I didn’t take down everything Dan said about the four atypicals. You can find his descriptions of these disorders on his blog — http://wewillgoon.blogspot.com/ Scroll down on the home page beyond the photo of Dan and his dog to a section titled “Atypical Parkinsonian Disorders (Parkinsonism Plus).”]Parkinson-Plus syndromes are more similar than different. They are all movement disorders.
“I need not worry about a specific Parkinson-Plus syndrome name for the condition I face, but rather realize that, although frustrating, this lack of narrow definition” is not a problem for me.
Diagnosing the disease is like a flower: as it blossoms, doctors can identify the disease more distinctively.
MAKING THE MOST OF LIFE
Not all of Dan’s suggestions will be applicable to everyone.
Understanding and adjusting to the disorder:
* Read: they are many books and internet sites on PD and Parkinson’s Plus
* Make a list of questions between visits to the doctor
* Join online support groups
* Maintain your values and faith
* Get counseling and therapy. Very helpful in working through grief.
Websites:
psp.org
pspinformation.com
cmdg.org/Parkinsonisms/parkinsonisms.htm (Canadian Movement Disorder Group)
psprecognition.com
wemove.org
parkinsonresearchfoundation.org
emedicine.medscape.com/article/1154074-overview (was topic596)
wewillgoon.blogspot.com
Books:
“The First Year – Parkinson’s Disease: An Essential Guide for the Newly-Diagnosed” by Jackie Hunt Christensen
CurePSP Guide
“Finding Meaning with Charles” by Janet Edmunson
“Lucky Man” by Michael J. Fox
“Saving Milly” by Morton Kondracke
“100 Questions and Answers About Parkinson Disease,” Abraham Lieberman
“To Love a Stranger” by Fran McMahon (2007)
“Awakenings” by Oliver Sacks
Living on with purpose:
* Participate
* Each day counts: Today is the greatest day
* Look up! Place your faith in a higher power or a spiritual concept that is meaningful for you
* Make peace with the past
* Set new goals
* Cultivate friends and take time to be with them
* Value and enjoy family
* Get a pet that you are able to take care of
* Do what you love
* Count your blessings each day
* Volunteer to help
* Get out into the community (stores, library, parks, events)
* Travel to a destination you have long-desired to see
How Dan has lived on:
* Began writing songs again
* Playing the guitar and singing are just the therapy Dan needs
* Started a blog called PD Plus Me
* Authored a book “I Will Go On: Living with a Movement Disorder”
Is it easy?
* Being diagnosed with a Parkinson-Plus syndrome is not easy. Dan has been greatly troubled at times.
* Support groups have been a Godsend to both Dan and Karrie
Support groups:
* There is sharing about medical challenges
* As humans, we do better when we are able to discuss our struggles with others
* Big impact: early-onset PD group
* Karrie and Dan help lead a local PD group
* There’s also an atypical parkinsonian disorder support group in their area
What it is all about: family
Info on Dan Brooks:
Dan’s email address: [email protected] (You can email him for a copy of his presentation.)
Dan’s blog: wewillgoon.blogspot.com
Dan’s CD, “I Will Go On,” is available on cdbaby.com
Dan’s book, “I Will Go On,” is available on amazon.com
QUESTIONS AND ANSWERS (Answers are by Dan Brooks or Karrie Brooks, unless indicated otherwise)
Question: What symptom did you first experience?
Answer by Dan: Head-nodding tremor. Sway/balance issue. Depression. Eye pain and light sensitivity. Cognitive problems. (He had problems in meetings.) Walking awkwardness. Frequent tripping. Hand tremor.
Question: Please tell the attendees about PatientsLikeMe.
Answer by Dan: On the website patientslikeme.com, patients and caregivers share info about medications and symptoms. This info can be shared with a medical care team.
Question: [sorry….I couldn’t hear it]
Answer by Dan: Dan feels he has a fine neurologist. Can’t overstate the value of working with a neurologist at a nearby university medical center.
Question: My spouse who has CBD cannot walk, talk or feed herself for the last 11 months. How can I make her quality of life better?
Answer by Karrie: Keep her connected to other people. Go outside or go to a supermarket — one place a week. Watch a movie at home. Have a special dessert. Invite friends over that she is comfortable with. Focus on the little things.
Question: My husband was 54 when he was diagnosed with PSP. Can you speak about the early progression rate?
Answer by Dan: Parkinson-Plus disorders have a faster progression than PD. Balance, eye, and swallowing problems can be quite severe early on. There’s no way to know how quickly your husband will progress. Important things in determining the progression: family support, exercise, attitude, spiritual outlook.
Question: My husband has a good bit of dementia along with PSP or CBD. How much can he truly understand of what is happening to him?
Answer by Dan: He cannot speculate how much the husband understands. The best approach is to assume that our presence (voice, laughter, singing, attention) brings happiness to our loved ones. It is best to assume the patient understands. Never talk about the person as if they are not there.
Question: Do PSP patients understand what is going on around them?
Answer by Dan: This is best addressed by a neurologist. It’s best to assume that the patient does understand. It’s not fair to make the assumption that the patient doesn’t understand. Always assume that something you do with a positive feeling will have a positive impact on the patient.
Question: My spouse has PSP. What do you think caused him to get the disease?
Answer by Dan: Each of us asks this question. He’s searched the web about this. Some possibilities: a virus that lies dormant in the body; random genetic mutations; exposure to a chemical in food, air, or water; cellular damage caused by free radicals.
This question begs another question: Why me? Dan believes in living his life to the fullest.
Answer by Janet Edmunson: Dr. Irene Litvan’s study is looking at the causes of PSP. See pspstudy.com. It’s important for everyone to participate!
Question: I have been diagnosed with PSP. Have you heard anything about a treatment for PSP in recent years?
Answer by Dan: There are virtually no medications well-suited to PSP. Medications are an individual-patient consideration. It’s best to speak with your MD. Medications for parkinsonism can be somewhat effective in Parkinson-Plus syndromes. Medications for depression can be effective.
Question: My wife has PSP. Please address botox for muscle relaxation.
Answer by Dan: Dr. Alan Freeman article on botox; it has been used to treat parkinsonism for a long time.
[Robin’s note: You can find an online copy of this article here: http://forum.psp.org/viewtopic.php?t=8135]Question: My husband has been taking Sinemet for over three years and it doesn’t seem to be helping any. His problems are progressing. Is there any medication other than Sinemet that will work with a PSP patient?
Answer by Dan: Some PD drugs may be appropriate or beneficial for PSP. Ask the MD about other possibilities. The MD is the only one who knows what is appropriate.
Question: I have participated in the PSP Genetics and Environmental Risk Factors Study at UCLA. What other PSP studies are underway?
Answer by Dan: See clinicaltrials.gov. There are several PSP studies listed there. CoQ10 is being looked at, for example.
Question: My sister has had PSP for about 4 years but was diagnosed just a year ago. She is barely audible but still very mobile and active. Her husband would like her to enroll in a sign language class. Is this a realistic option?
Answer by Dan: Ask the sister. This shouldn’t be forced on her. Anxiety and frustration are hard to ignore. Is it reasonable to expect the sister can learn another language?
Question: I have had PSP for about 3 years. It started with a fall. I first went to my primary care physician who tested me for a stroke. The results were negative. Then to a neurologist who again could not see anything wrong. Why do many primary care physicians and general neurologists find it so difficult to diagnose PSP?
Answer by Dan: Dan was also checked out for the possibility of a stroke.
Hopefully CurePSP is helping the medical community be more aware of PSP such that we won’t have to ask this question any more.
Question: My husband has PSP. When is it appropriate to tell a loved one that he should no longer drive a car?
Answer by Dan: Been there, done that. I love driving but that’s in the past. I miss driving but I don’t miss the thought that I could hurt someone. Talk to the doctor.
Question: I have PSP. I am trying to walk on a daily basis but I’m falling more and more. Should I continue to walk?
Answer by Dan: Keep walking but be safe. Use safety aids. Take short walks – 4 or 5 houses down the street.
Question: I am an only child, living 1K miles away from my mother. My mother is in an assisted living facility. She walks with a UStep walker. She has problems with speech, falling and swallowing. The doctor says she is depressed. She’s not interested in helping herself. Any suggestions on how to engage her?
Answer by Karrie: Many PSP patients have apathy. Fine line between pushing a loved one and letting a loved one make his/her own decisions. It’s tough when you have to start making decisions for a loved one.
When giving choices to a loved one, give them two choices. Keep things simple.
Question: My father has LBD with movement problems. How does LBD differ from PSP?
Answer by Dan: Both may appear to be PD initially. Both have parkinsonism symptoms. LBD is related to Lewy bodies; these are protein deposits. PSP is related to tau protein. In LBD, the dominant issue is progressive dementia. In PSP, the more severe problems are with balance and eye movement.
Question: My husband has MSA and LBD, and even though he is in the last stages, I am still looking for answers and information. Where do you suggest I look?
Answer by Dan: Answers are best found with the experts — the neurologists and movement disorder specialists. Try online support groups, especially the Yahoo!Groups. There are lots of websites with good info.
Question: My spouse has MSA. Is there any recent research into immuniglobulin and/or stem cells?
Answer by Dan: As a layperson, he doesn’t know much about it. See lancet.com for lots of good research.
Question: I have been diagnosed with PD. Can you explain how some people with PD diagnoses can actually have Parkinsons Plus disorders?
Answer by Dan: 15-25% of those diagnosed with PD actually have Parkinsons-Plus. Good website – emedicine.com – for a comparison of PD and Parkinsons-Plus syndromes.
Question: My husband has PSP. Where can I find an online group for caregivers?
Answer by Dan: Look into:
PSP Forum: forum.psp.org
PSPinformation Yahoo!Group
The online-based support groups being organized by Larry Schenker
Question: How does Karrie take care of herself (as a caregiver)?
Answer by Karrie: It is easy to get overwhelmed. You have to be there for yourself first, and then your husband. Life as a caregiver is tiring physically, mentally, and emotionally. It’s important to stay fit. Important to have something to look forward to each day, such as an afternoon TV show, a book, a puzzle. Isolation can be a real enemy. It’s important to get out of the house alone every once in awhile. It’s important to talk to others about problems, and to laugh with others. She saw a professional counselor. When Dan lost his insurance, the counselor cut her hourly rate so that Karrie could continue with counseling. Karrie has to work at this every single day.
Question: How do you, Dan, remain so positive? I don’t think it is reasonable that someone remain as upbeat as you.
Answer by Dan: I’ve always been optimistic and positive. I have a great family that keeps me positive. Faith, family, music, writing – these things keep me going.
Each day starts with two questions: What do I want to accomplish today? Who do I need to get in touch with?
Life is precious. You must make a conscious decision to embrace it. I can be down at times. But this very moment is beautiful. Be present for the people who love you.
Question: Who is speaking at the next webinar?
Answer by Karrie: Dr. Neal Hermanowitz will present at the next webinar 10/8/09.
Question: How can I see the Janet Edmunson webinar that I missed?
Answer by Janet Edmunson: Anyone can email Janet ([email protected]) to get a copy of her presentation.
Answer by Karrie: These webinars will not be on psp.com until perhaps the end of the year.