Category Archives: LBD

Lewy Body Dementia: Journey of Nick (Aiken Standard)

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Lewy Body Dementia: Journey of Nick (Aiken Standard)

This is an article by the co-leader of the Aiken, SC Lewy body dementia (LBD) caregivers support group in the local newspaper. The group’s name is “M’Aiken a Difference Lewy Body Dementia Support Group.” In the article, the group leader describes a bit about her husband Nick’s journey with LBD, provides an overview of LBD, and notes the value of caregiver support groups in helping members adjust to the “new normal in their lives.”

Robin

Lewy Body Dementia: Journey of Nick

By Nancy Sofge Martin, Facilitator, MADLBDSG
Aiken Standard, maturetimes
June 21, 2017

I started my journey with Nick After hearing about his Lewy Body Dementia diagnosis, I started to learn more about the diseases within the dementia spectrum and my caregiver journey began.

Dementia Umbrella Defined

The dementia umbrella is a way for us to have a mental picture as we understand the various dementia diseases. Dementia is the main term, and the dementia diseases fall in groups below this main term. Some examples of the diseases within this broad dementia spectrum are Alzheimer’s Dementia (AD), Lewy Body Dementia (LBD), Parkinson’s Disease (PD), Frontal Temporal Dementia (FTD). Keep in mind that there are Mixed Dementias (overlapping dementias) and all dementias are not AD. Dementia is quite challenging for family caregivers.

LBD

Symptoms may include significant memory loss, hallucinations, lost planning and problem solving abilities, fluctuating alertness and cognition, sleep disorders, balance and falling, language problems and mood changes, movement changes (walking slower with smaller steps and problems using hands and tremors), sense of direction and spatial issues, and severe drug sensitivities.

It generally takes around eighteen months to get a diagnosis because this dementia is either under-diagnosed or misdiagnosed. Fortunately, my husband, Nick Martin’s diagnosis came in about nine months. LBD is a diagnosis that affects all family members. As I was told early in my husband’s journey, “this disease is a hard one.” Of course, I was so overwhelmed with the sudden new normal as LBD took on a very fast progression of dementia, behavior issues, and physical movement symptoms. LBD has been described as Parkinson’s Disease (PD) on steroids.

Nick’s Journey

Nick, a big Clemson Tiger Fan, is a wonderful family man, who is always there for his friends and neighbors. Life was rounded with community activities by serving as the volunteer recreation director and a longtime school board member in his hometown of Blackville, SC. He worked for the State Department of Education and had a very full and happy life before “Lewy” proteins attacked the neurons in his brain and caused the symptoms listed above. Subtle LBD symptoms began prior to 2013 and following a couple of surgeries after other medical issues that year, I noticed that something was terrible wrong.

I was unfamiliar with LBD at the time of diagnosis, his neurologist immediately told me that this one had the potential to be very hard on the caregiver. Little did I know anything about the caregiving journey of LBD that I was beginning. I was an educator and truly not fully prepared for this part of our journey. Since this disease is on a fast train, I had to learn all I could for my role of caregiver and take care of managing his illness, as well as providing all household obligations in a short amount of time.

M’ Aiken A Difference Lewy Body Dementia Support Group

Our support group was started to honor Nick and to guide those caregivers experiencing a change from a NORMAL to a NEW NORMAL in their lives due to a dementia diagnosis. Patrice Tavernier and Linda Lucas came aboard, and their expertise and experience are the backbone of our group. DayBreak Adult Care Services sponsors our group, and we meet the third Tuesday of each month at 11:00 am in their Training and Outreach Center, 151 Lined Street SW, Aiken, SC 29803.

I soon learned that a caregiver must balance everything and the importance of not feeling guilty. Your mental and emotional state are extremely important as you fill the role of a primary caregiver. Is has been emphasized to me that a caregiver has to find respite opportunities and social outlets as the disease progresses. When others offer help, be open and accept it. Bring help into the home as needed to meet the daily demands of dementia care as you reserve your stamina to continue moving forward and protect your health. There is help out there! You are not alone! Caregiving is the hardest job that you will probably ever do.

“How to Stay Sane and Healthy” as a Caregiver

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The “Transition Aging Parents” blog (transitionagingparents.com/blog) was started by Ms. Dale Carter of Indiana after she became a caregiver for her mother in 2009.  She began blogging to help adult children caregivers.  In 2014, Dale’s husband was diagnosed with Lewy Body Dementia (LBD).  Still, the focus of her blog remains helping caregivers, regardless of diagnosis.  (In fact, there are only three posts that mention LBD.)

Recently, Dale posted about “how to stay sane and healthy as a caregiver spouse.”  She offers six “timeless lessons,” including:

1- Recognize that you will ride an emotional roller-coaster.
2- We each can choose our response to the situation.
3- Recognize that each family member will process the situation differently and in their own time.
4- Ensure you build and maintain a circle of support for your loved one and for you.
5- Getting enough sleep, fitting in workouts, meditating, and taking time for yourself are vital to your physical and emotional health.
6- There is no right or wrong way to do things.

Most of the blog post is copied below.  Again, it applies to all caregivers, not just spouses.

Robin

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www.transitionagingparents.com/2017/06/13/how-to-stay-sane-and-healthy-as-a-caregiver-spouse/

How to Stay Sane and Healthy as a Caregiver Spouse
by Dale Carter
June 13, 2017
Transition Aging Parents

As caregiver spouse for my husband (with Parkinson’s and Lewy Body dementia),  I want to share a few of my key “lessons learned.”  I wrote this “still relevant” list in another blogpost 2 years ago.  Amazing how timeless these lessons are.

1.  As a caregiver, recognize that you will ride an emotional roller-coaster. There were moments of feeling blessed for receiving an early diagnosis and then times of despair as I realized that our future had changed forever.

2.  Recognize that while there may be no cure for a loved one’s diagnosis, we each can choose our response to the situation. I’ve always been an action-oriented advocate.  Know there is a time for that BUT there is also a time for just being present with your loved one.   There is great healing in your presence, even just sitting in silence.

3.  Certainly educate yourself and your family members about the illness and prognosis. But recognize that each family member will process the situation differently and in their own time.  My daughter told me she could not bring herself to read the info I sent her, but one night she watched a Netflix show, “The Boss”, in which the lead character has Lewy Body.  She told me she sat, riveted to the show, and finally was able to understand what was happening to her father.

4.  Ensure you build and maintain a circle of support for your loved one and for you. My husband’s “twice a week” CAREgiver is a vital part of his life.  He tells me that she patiently helps him, shares in his interests and even plays the piano for him.  As for me, a colleague convinced me to take a much needed birthday getaway weekend with a childhood friend while my son took my husband to see his sister. Sometimes it seems that all the planning to do special events is just too much trouble and expense, but it is critical for your well-being.

5.  One thing I struggled with even before being a caregiver was getting enough sleep and fitting in workouts. This is not just important.  It is vital to your physical and emotional health.  Set a bedtime and get at least 7 hours of sleep.  I choose to do my workout in early morning.  It doesn’t matter when you exercise, meditate or take time for yourself.  The key is actually doing it!

6.  And, finally, recognize you are on your own unique journey. There is no right or wrong way to do things.  So much is out of your control.  If you act out of love, compassion and the humility that you need others, you will be doing the best you can for your loved one and yourself.

Lewy Body Dementia Canada website, and Top 10 Priorities After an LBD Diagnosis

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Someone in our local Lewy Body Dementia (LBD) support group shared with me that there’s a Lewy Body Dementia Canada website. You can find it at lewy.ca (or lewybodydementia.ca – both work). The site was launched in November 2015 by Timothy Hudson. Timothy notes that he keeps his Facebook page more up-to-date than this website.

Nonetheless, I came across several worthwhile pages on Lewy.ca, including this article on the top 10 priorities after an LBD diagnosis. (Actually, the article is a list of 11 items.) The list was created by Timothy Hudson in collaboration with a group of caregivers on an LBD caregiver Facebook group (www.facebook.com/groups/lyndseywilliams). I think all of the items on the list are still relevant even years after the diagnosis.

The priorities are:

1. Actively advocate for your loved one.

2. Find out what they want for care and quality/quantity of life.

3. Get Powers of Attorney, both for medical care and finances.

4. Rigorously assess finances.

5. Be ultra careful with medications.

6. Get a supportive specialist or Neurologist and partner with them.

7. Keep your loved one and yourself socially engaged and physically active.

8. Join and actively participate in a support group online or in person — ideally, both.

9. Keep learning and researching.

10. Remind yourself that you are stronger than you think, and that you can get through all this.

11. Forgive. Be patient. With them, with yourself, and with everyone involved.

You can find the details behind these priorities here:

www.lewybodydementia.ca/top-10-priorities-after-lewy-body-dementia-diagnosis/

Top 10 Priorities After Lewy Body Dementia Diagnosis
April 24, 2016
Lewy Body Dementia Canada

Robin

 

July 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA

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July 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California Parkinson’s Disease (PD) support group meetings for July 2017.

With my Brain Support Network atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are PD support group meetings:

* Lodi, Monday, 7/3: a neurologist is speaking on Parkinson’s and essential tremor. I know nothing about this neurologist but it seems to be a unique opportunity to hear a neurologist speak in Lodi.

* Soquel, Wednesday, 7/5: physical therapist addresses practical solutions to daily challenges

* Yuba City, Monday, 7/10: social worker talks about the importance of sleep for caregivers. Hopefully everyone in this area knows about the Del Oro Caregiver Resource Center. If not, please attend the talk just to learn about their services.

* Bakersfield, Tuesday, 7/11: fitness instructor demonstrating exercises and yoga

* Turlock, Wednesday, 7/12: social worker describes coping skills for dealing with Parkinson’s (for both those with a diagnosis and caregivers). Certainly many of these coping skills will be applicable to those in Brain Support Network.

* Palo Alto/Avenidas, Wednesday, 7/12: a palliative care social worker and hospice nurse will be addressing palliative care and hospice at home for those with neurological disorders (not just Parkinson’s). Many in the Brain Support Network group apply for palliative care. Come learn about what this is!

* Walnut Creek, Saturday, 7/15: movement disorder specialist Salima Brillman, MD, will be talking about the diagnosis and treatment of Parkinson’s. She is very familiar with the disorders in our group.

* Sacramento/Arden Arcade, Thursday, 7/20: an excellent physical therapist addresses physical therapy for PD. She may be familiar with the disorders in our group.

Generally, I recommend driving no more than 30 minutes to attend any of these meetings. If you attend a meeting and learn anything, please share with me so that I can share with others!

Do you need to know the support group meeting location, day/time, contact info, and how to RSVP if required? Please refer to the Stanford Parkinson’s website for all Northern and Central California support groups:

parkinsons.stanford.edu/support_groups.html

As always, I’ve deleted the deep brain stimulation-related talks.

Robin
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Lodi
Monday, 7/3, 10-11am
Guest Speaker: Mohammad Kazmi, MD, neurologist, Lodi
Memorial Hospital, Lodi
Topic: Parkinson’s Disease and Essential Tremor
RSVP?: No.

 

Soquel (Santa Cruz County)
Wednesday, 7/5, 1-2:30pm
Guest Speaker: Ruby Straehley, PT, physical therapist
Topic: Practical solutions to everyday challenges facing those with Parkinson’s
RSVP?: No.

 

Yuba City (Tri-Counties)
Monday, 7/10, 1-2pm
Guest Speaker: Dorene Fanning, LCSW, family consultant, Del Oro
Caregiver Resource Center
Topic: Insights into challenges and the importance of sleep for caregivers
RSVP?: No.

 

Bakersfield
Tuesday, 7/11, 2-4pm
Guest Speaker: Deb McCormack, Bakersfield Mind & Body Studio
Topic: Exercises and yoga for PD
RSVP?: Yes to group leaders Linda Feist, 661-304-9227, or Bill
Burgemaster, 661-343-2707

 

Pacific Grove (Monterey County)
Tuesday, 7/11, 3-4:30pm
Program: Discussion groups – people with Parkinson’s and care partners
RSVP?: No.

 

Davis – regular and caregivers groups together
Wednesday, 7/12, 12:45-2:15pm (special day/time for July)
Guest Speaker: Marg Bartosek
Topic: Experiential presentation of Feldenkrais awareness through movement
RSVP?: No.

 

Turlock
Wednesday, 7/12, 1-2pm
Guest Speaker: Nancy Neufled Silva, PhD, LCSW, counselor, Turlock
Topic: Coping skills in dealing with PD for patients and caregivers
RSVP?: No.

 

Palo Alto/Avenidas
Wednesday, 7/12, 2-3:30pm
Guest Speakers: Libby Hagman, RN, clinical outreach coordinator, and Anthony Lupian, MSW, Transitions program coordinator, Mission Hospice and Home Care, San Mateo
Topic: Palliative care, hospice at home, and hospice house for Parkinson’s – recommended services and what’s new
RSVP?: No.

 

Sonoma/Vintage House
Thursday, 7/13, 10-11am
Guest Speaker: Margot Schaal, certified Feldenkrais practitioner
Topic: Feldenkrais
RSVP?: No.

 

Walnut Creek (Mt. Diablo)
Saturday, 7/15, 9am-noon (speaker 10:45am-11:45am)
Guest Speaker: Salima Brillman, MD, movement disorder specialist, The
Parkinson’s Institute, Sunnyvale
Topic: Diagnosis and treatment of Parkinson’s
RSVP?: No.

 

Elk Grove
Wednesday, 7/19, 10-11:30am
Guest Speaker: Christy Adams, RN, MPH, trauma prevention coordinator,
UC Davis
Topic: A matter of balance
RSVP?: No.

 

Merced
Thursday, 7/20, 10am-noon
Guest Speaker: Lisa Clawson, LVN, HealthSouth Rehabilitation, Modesto
Topic: Rehab services for PD
RSVP?: No.

 

Sacramento/Arden Arcade
Thursday, 7/20, 10am-noon
Guest Speaker: Christine Shade, DPT, physical therapist, Kaiser Roseville
Topic: Physical therapy and outdoor exercises for PD
RSVP?: No.

 

Mill Valley (Marin County)
Friday, 7/28, 1-3pm (guest speaker 1-2pm)
Guest Speaker: James Nevin, Sr., attorney
Topic: Estate planning and end of life issues
RSVP?: No.

 

Webinar on hallucinations and delusions in LBD, June 28th

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Webinar on hallucinations and delusions in LBD, June 28th

The Lewy Body Dementia Association (lbda.org) is hosting a webinar this Wednesday, June 28th at 11am California time on hallucinations and delusions in Lewy body dementia (LBD).   “Lewy body dementia” is a term that includes Parkinson’s Disease Dementia and Dementia with Lewy Bodies.

The featured speaker is Jim Galvin, MD, a neurologist who is an expert on LBD.  There is no charge to attend.  Details below.

Updated as of June 30th:  Brain Support Network posted our notes to the webinar (including the Q&A session) here:

www.brainsupportnetwork.org/webinar-notes-hallucinations-and-delusions-in-lbd/

Robin

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lbda.org/reality

LBDU Webinar:
The Reality of LBD – Hallucinations & Delusions & How to Manage Them
Wednesday, June 28, 2017
2:00 pm Eastern Time

Presenter:
James E. Galvin, MD, MPH
Professor of Integrated Medical Science
Associate Dean for Clinical Research
Charles E. Schmidt College of Medicine
Florida Atlantic University

Seeing things that aren’t there and/or holding firmly to beliefs that aren’t real – these symptoms of vivid hallucinations and delusions are the reality that haunts those suffering with Lewy body dementia (LBD) – and their caregivers. Yet, LBD makes patients sensitive to medications that are typically used to manage these vivid hallucinations and delusions. LBD requires a careful and conservative approach to managing these upsetting symptoms.

Join LBDU and Dr. James E. Galvin of the Charles E. Schmidt College of Medicine at Florida Atlantic University for a free, informative webinar on hallucinations and delusions in LBD. Dr. Galvin will discuss current strategies to manage hallucinations and delusions in LBD. He also will share information about ongoing research and clinical trials.