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Ccclement1@gmail.com Resource Page
Carol and Orrin’s Resource Page
Welcome to your personalized Cognitive Concierge Resource Page! We appreciate the opportunity to work with you on your individual priorities. This document will be updated to reflect any changes in needs or preferences and we will post all relevant strategies here for easy access. We will notify you when we update your Resource Page.
Your Consultants
Becky Khayum, M.S., CCC-SLP Becky.khayum@mycognitiveconcierge.com
Maureen O’Neil Brown, MS, OTR/L, CBIS Maureen.brown@mycognitiveconcierge.com
http://www.mycognitiveconcierge.com
Office: 331.256.9134
Direct: 773.354.7539
Life Participation Goals and Strategies
Carol and Orrin have identified the following activities as priorities:
- Ensure best quality of life for Orrin and Carol
- identify meaningful and organized life participation priorities that will guide supportive services
- Prioritize a consistent weekly schedule for home and leisure activities where Orrin can maintain or increase participation
- Provide guidance and coaching for general communication tools
- Prioritize supports in the home environment and plan for potential future needs
- Engaging Orrin in meaningful activities
- Reduce Orrin’s frustration with communication, especially with remembering names
Plan
Maureen, Becky and Hannah’s To Do List-In Process
- Email list of questions for upcoming neurology appointment on 10/10/23
- Email list of questions for upcoming audiology appointment on 10/16/23
- Send Hearing Loss Resource Kit to Carol, along with suggestions for important pages to review in the packet
- Add to list of partial weight-bearing activities for Orrin after follow-up visit with MD on 10/1/23
- Assist as necessary with problem solving Bluetooth headphone connectivity to CD player vs TV
- Send Carol and Orrin their Resource page link weekly
- Assist with identifying strategies using association for name recall, especially for greeting neighbors and in preparation for the class reunion in October
- Research upper body exercise programs
- Assist with strategies for hearing aid insertion, if necessary
- Identify and assist in set up of speech therapy services
Maureen, Becky and Hannah’s To Do List-Completed
- Use Central Time Zone for all meeting scheduling
- Meeting summaries/resources should be placed in a Word document so Carol can print and file
Carol and Orrin’s To do list-In Process
- Hearing aid appointment at the VA hospital on 10/16/23. Orrin is currently not wearing hearing aids as they are being repaired. Please follow-up with the audiologist or hearing aid company to problem-solve the hearing aids’ Bluetooth connectivity on Orrin’s phone
- Follow-up with orthopedic surgeon- 10/1/23; follow recommendations for activity modification post-surgery
- Make Plan of Day schedule cards for each day, especially following surgery
- Ask for PT referral after surgery
- Please feel free to share your Resource Page with family members to see updates about our meeting discussions and resources
Carol and Orrin’s To do list-Completed
- Follow-up with Northwestern regarding appointment scheduling, including checking on Medicare coverage for visit-Appointment on 1/4/24
Long-Term Priorities
- Find system to keep paperwork and emails from any medical appointments and other activities organized
- Assist in developing structured, predictable weekly schedule that provides consistent meaningful activities for Orrin
- Provide guidance and support in finding a speech therapist and ongoing collaboration with the speech therapist
- Increase collaboration and communication with health care professionals involved in your care
- Identify strategies to increase participation/independence in home chores and meaningful leisure activities as well as ways to prevent withdrawal from meaningful activities
- Research local volunteer opportunities and identify those that may be of interest to Orrin. We can provide education to the staff members at the volunteer center to educate them about aphasia and tips for communicating with Orrin
- Identify strategies to assist with decreasing frustration/increasing positive mental health
- Provide general suggestions and coaching to enhance Orrin’s daily communication skills. (Your speech therapists will apply use and practice of these communication tools, in addition to care partner training, during your sessions.)
- Provide general suggestions to help with comprehension during daily conversations due to hearing loss
- Assisting with personalization of aphasia/PPA cards that list specific communication tips that may be helpful during conversations with Orrin
- Education about diagnosis of PPA
- Identify useful strategies to help increase success and comfort with conversation
Current Functioning
- Foot surgery (8/29/23) to reposition left great toe via pinning, relocate second toe into proper alignment. Currently in walking boot. Follow-up with surgeon is on 10/1/23. Orrin did not receive correct post-surgical instruction and is now non-weight bearing and using knee scooter to get around more easily
- Orrin has always been “a man of action” and enjoys being busy
- Orrin was never known to be a big talker, but of late has become more frustrated with difficulty recalling names, talking on the phone and with conversations in bigger groups. Carol is often with him when he needs to talk. Carol reports that Orrin is always able to get his message across. Carrie has made aphasia cards to give to people to help explain his diagnosis. Carol has made flash cards ahead of social occasions to help Orrin practice names of those whom he might see. Texting takes some increased time
- Orrin drives and loves running errands
- Orrin is able to follow a routine schedule well but becomes anxious with last minute changes
- Carol has taken over the financial responsibilities
- Orrin golfs three times/week
- Orrin goes to visit with his aunt two times a week and then has family dinner with her and the extended family on Sundays at their condo
Family/friends support system
Carrie, daughter
Anne and husband, Tony
Grandsons, 6, 8 and 15 years old, granddaughter
Orrin’s Aunt
Family in Kentucky
Carol’s friend, Jane
Care Team
VA Health Care
Orthopedic surgeon, left foot repair and bilateral knee replacements
Thoeun Se, patient registration specialist, Northwestern Medicine: 312-695-9627
Cognitive Concierge-Becky Khayum, MS, CCC-SLP, Hannah Caron, SLP.D., M.S., CCC-SLP and Maureen O’Neil Brown, MS, OTR/L, consultants
Medications/Pertinent Medical Information
We can add any medication regimen here.
Questions for Medical Professionals
We will use this section to prepare for appointments.
Potential Future Needs and Concerns
We can use this section to identify long term priorities.
Support for the Caregiver
Respite and a supportive community assist with preserving mental and physical health of the caregiver. Respite may come in the form of a daily, routine leisure activity in which your loved one will independently engage, a friend or relative who will spend time with your loved one, or a formal community program for engagement. Knowing your loved one is safe and content will allow you take time to care for yourself to complete necessary errands or engage in work or leisure tasks with full attention. Support groups will allow you to find a safe space to discuss common issues, problem solve with others, and create a network of resources.
Support Groups
- National Aphasia Association PPA Chats
- Cognitive Concierge PPA Chats
Research Studies
We will use this section to list information about involvement in medical studies.
Resources and Information
On Grief and Grieving Kübler-Ross, Elisabeth and Kessler, David
The 36 Hour Day Mace, Nancy L. and Rabins, Peter V.
sherryamartin72@gmail.com
Sherry and Terry’s Resource Page
Welcome to your personalized Cognitive Concierge Resource Page! We appreciate the opportunity to work with you on your individual priorities. This document will be updated to reflect any changes in needs or preferences and we will post all relevant strategies here for easy access. We will notify you when we update your Resource Page.
Your Consultants
Becky Khayum, M.S., CCC-SLP Becky.khayum@mycognitiveconcierge.com
Maureen O’Neil Brown, MS, OTR/L, CBIS Maureen.brown@mycognitiveconcierge.com
http://www.mycognitiveconcierge.com
Office: 331.256.9134
Direct: 773.354.7539
Life Participation Goals and Strategies
Sherry and Terry have identified the following activities as priorities:
- Evening activities at home (besides TV/jigsaw puzzles)
- Golf
- Travel
- Dinner with others
- Finding one of Terry’s friends to visit with him each week
Plan
Maureen and Becky’s To Do List-IN PROCESS
- Maureen will problem solve to help make Medic Alert bracelet easier to use.
- Maureen will look into home video monitoring system options
- Maureen will compile and share information about emergency plan resources, including:
- iPhone apps/widgets
- Medical alert watches/devices
- Home-based medical alert device options for both Canada and US.
- Update Resource Page to include Lorraine’s Long-Term Speech Therapy Plan
Maureen and Becky’s To Do List-COMPLETED
- Maureen will assist with finding plan for workout clothes for sessions with Emily. HOLD FOR NOW-SYSTEM WORKING
- Maureen will assist with finding plan for using workout shoes on treadmill. HOLD FOR NOW-SYSTEM WORKING
- Maureen will research medical alert devices (Canada and US) which will default to call Sherry. ANGELSENSE INFO
- Maureen will compile and share strategies for successful TV remote use to access CNN. DONE
- Our team will give recommendations regarding Terry staying home alone for the three days you will be visiting your daughter at the end of August DONE
- Maureen will research home security device and will compile strategies for successful use of control panels (kitchen and door) to disarm the alarm HOLD FOR NOW- WORKING ON OPERATING SYSTEM
- Maureen will send list of questions and names of agencies who share licensing and inspection reports to vet adult day health programs in Florida-DONE
- Becky will send Sherry contact information for exploring Cognitive Class offerings for Terry-DONE
- Maureen and Becky will offer ideas to form a golf foursome in Bonita Bay at Terry’s club as well as some adaptive golf programs to assist Sherry to make golf outings more consistent and enjoyable-DONE
Sherry and Terry’s To do List-IN PROCESS
- Try using Lorraine’s strategy of looking over menu at home ahead of dinner and writing down choice on slip of paper to assist Terry in ordering in real time
- Use information from Becky and Maureen to try and set up golf outings for Terry in Florida
- Use list of questions and area agencies from Maureen to consider adult day health programs in Florida
- Consider reaching out to Patty Skrivin to investigate next Cognitive Concierge cognitive class on the Milky Way
- Consider joining the National Aphasia Association (NAA) PPA Chats
- Practice reading aloud-Kelly 1x/week, Brittany 1x/week, Sherry-find other ways to practice reading aloud through the week.
- Lorraine will take scripts and write a few suggested responses for Terry on flash cards.
- Try programming home alarm system on phone. If successful, consider updating only one key pad for Margarita; if unsuccessful, let Maureen know-she will research other alarm companies that do not rely on your wifi, as you turn it off when leaving for Florida
- Check out the silicone medic alert bracelet; it may be easier to get on and off independently
- If Terry continues a pattern of leaving the house without telling you where he is going, let your team know and we can work on a way to communicate that information
- Check out Life360 app for tracking Terry’s location; it might be more precise than “Find my Phone”
- Send Maureen a picture of the alarm fob to see how we can help Terry use it successfully
- Try the step-by-step instructions to increase the “dwell time” on the iPhone buttons
- Continue reinforcing Terry’s use of “spoken language “ – even if to keep the” feel and flow” of engagement.
- Terry to be involved in turn taking conversations – where appropriate.
- Continue list of “throw-out” phrases for group conversations
- Have Terry practice reading the names aloud
Sherry and Terry’s To Do List-COMPLETED
- Try using pictures of recycling items to help Terry identify and sort items, an activity he wants to complete to feel helpful-DONE
- Work on creating a picture album of important people with large, easy-to-read labels/short descriptive phrases on Terry’s phone DONE
- Creating Card 1 of 2 “I have Communication Problem/Aphasia “cards: CARD 1-for Emergency; CARD 2-for introduction to a new listener (What is aphasia and how they can help) DONE
- Have large “yes-no” signs in each room. Practice using them for clarification of understanding of conversation. DONE
- Bring a real-life conversation that has been stressful to Lorraine’s session to identify breakdown and tools that might assist DONE
- Bring newspaper with you to Lorraine’s session to see what headlines/stories Terry most enjoys. DONE
- Lorraine recommends having a white board in every room to assist with communication DONE
- Send Becky/Maureen items to include on your Resource Page ONGOING
- Share this Resource Page as you wish with your care team and with friends/family ONGOING
- Continue to use your notebook to document Terry’s doctors’ appointments ONGOING
Speech-Language Therapy Plan
- Partner Training for better conversation:
- Conversation breakdowns (important conversations which end in Terry walking away)
- Lost conversations (Interaction conversations which are light are no issue; Transaction conversations are important and need clarity)
- Tool Box (“Layer One”= YES, NO, MAYBE cards for consistency of responses and verification; “Layer Two”=gestures; animation, voicing/intonation, non-verbal expressions
- More conversation with daughters:
- Phone : helping with scripts for these
- FaceTime: starting to consistently use
- Script training-initiating and responding
- Reading:
- Look at newspaper to see what Terry enjoys most to increase conversation
- “Challenge Silence”:
- Engage Terry and keep the “talk/chat” connection up.
Ongoing evaluation of the 4 COMMUNICATION MODALITIES:
Speaking and writing – messages going OUT
Listening and reading – messages going IN
Terry and Sherry – to understand the barriers APHASIA ‘PPA’ – presents in all 4 of these.
Work with SLP – to look at which of these areas are strengths and weaknesses. This will create GOALS.
Focus is on Partner Training for better Conversation /resolving conversations that require, – detail/decision/planning/.
Long-Term Priorities
- Communication/daily conversations
- Emergency plan for calling 911–will need to consider living in Toronto and Florida
- Success and confidence with working the remote control for TV to watch CNN
- Success and confidence with disarming system in morning
- Increased socialization with friends, which has been challenging as many of Terry’s friends are no longer local
- Writing the “Father of the Bride” speech for daughter’s wedding
Current Functioning
- Walk the dog
- Church
- Going out to meals
- Golf
- Physical trainer (2x/week)
- Outings/shopping
- Jigsaw puzzles
- Visiting museums
- Running errands
- Watching CNN
- Cleans up after dinner (no difficulty)
- Empties dishwasher (occasionally misplaces items)
- Recycles/Disposes of items (confuses bins for trash, recycling and compost)
Family/friends support system
Family
Daughters:
Brittany Hammond 512 552 5955 hammondbrittany@gmail.com
#1428 4323 S. Congress Ave. Austin, TX 78745
Kelly Hammond 479 571 0142. kellyahammond@gmail.com
2706 S. Morlan Ave. Springdale, AR 72764
Mother (Sherry’s) Marty Martin: 765 874 2470 Lynn In
Brother (Sherry’s) Joe Martin: 727 743 6344 or 727 397 8185 home Florida
Brother (Terry’s) Chris Hammond: 780 975 2864 or 780 436 7127 home Edmonton
Other Family/Friends Contacts
Sally Doerge cell: 416 857 0467 or 416 932 3733 Toronto
Susan Orr Mongeau cell: 514 891 4392 or 514 403 4725 Montreal
Jim MetCalfe cell: 416 931 4161 jamesmetcalferealtor@gmail.com. Toronto
Terry’s Friends
Jim MetCalfe, Bill McLean, Jim Mitchell, Kenn LaLonde, Serge Rancourt, Kevin Brady, Ray Mo, Bruce McDonald, Geoff Bowkett, Ian Baillie, Shayne Lipton, Tim O’Conor, Richard Beeby/Liz Seibert, Brad/Mary Arthur
Sherry’s Friends
Sally Doerge, Susan Orr-Mongeau, Leanne Herbert, Luce Veilleux, Marie-Josee Vinet, Lin Stranberg, Terri Spillers, Carolyn Convey, Diksha Dua, Charlie MacIntyre, Barb Wiegand, Lisa Lipton, Liz Seibert, Mary Ramshaw
Care Team
Terence “Terry” Richard Hammond-client cell: 416 258 2682
Sherry Martin – Terry’s wife Cell: 416 569 0534 Home: 1 Sherbourne Street. North, Toronto, ON (Apr – Nov) 416 485 0606 Home: 10404 Yorkstone Drive, Bonita Springs, FL (Nov – Apr) 239 676 5773 sherryamartin72@gmail.com
Dr. Monica Pearl GP Toronto 416 969 3240
Dr. Sandra Black Neurologist 416 6100 ext 85411, 416 480-4551 Sunnybrook Hospital
Dr. Tony Finelli Oncologist 416 946 2851 Princess Margaret Hospital
Dr. Daniel Schachter Dermatologist 416 922-9620
Dr. Martin Sterling Dentist 416 923 8042
Dr. Mira Acs Optometrist 416 966 1955
Lorraine Podolsky, SLP – Speech therapist 416 568 5778
Cognitive Concierge-Becky Khayum, MS, CCC-SLP and Maureen O’Neil Brown, MS, OTR/L, consultants
Medications/Pertinent Medical Information
Primary Progressive Aphasia: Donepezil. 10 MG daily
Telemisartan. 40 MG daily
Rosuvastatin: 10 MG daily
ALLERGIC TO PENICILLIN
Questions for Medical Professionals
We will use this section to prepare for appointments.
Potential Future Needs and Concerns
We can use this section to identify long term priorities.
Support for the Caregiver
Respite and a supportive community assist with preserving mental and physical health of the caregiver. Respite may come in the form of a daily, routine leisure activity in which your loved one will independently engage, a friend or relative who will spend time with your loved one, or a formal community program for engagement. Knowing your loved one is safe and content will allow you take time to care for yourself to complete necessary errands or engage in work or leisure tasks with full attention. Support groups will allow you to find a safe space to discuss common issues, problem solve with others, and create a network of resources.
Sherry’s Caregiver Support Group Memberships:
- Northwestern PPA Group
- Barb Murphy, Sarah Stafford, Linda Hitchens, Jackie Templeton
Research Studies
- Northwestern PPA study
Resources and Information
On Grief and Grieving Kübler-Ross, Elisabeth and Kessler, David
The 36 Hour Day Mace, Nancy L. and Rabins, Peter V.
tolatham@gmail.com Resource Page
Anne and Tom Latham’s Resource Page
Welcome to your personalized Cognitive Concierge Resource Page! We appreciate the opportunity to work with you on your individual priorities. This document will be updated to reflect any changes in needs or preferences and we will post all relevant strategies here for easy access. We will notify you when we update your Resource Page.
Your Consultants
Becky Khayum, M.S., CCC-SLP Becky.khayum@mycognitiveconcierge.com
Maureen O’Neil Brown, MS, OTR/L, CBIS Maureen.brown@mycognitiveconcierge.com
http://www.mycognitiveconcierge.com
Office: 331.256.9134
Direct: 773.354.7539
Overarching Focus Areas
Best quality of life for both Anne and Tom
Creation of a comprehensive individualized care plan that will serve to integrate the efforts of all team members towards Anne’s goals of care
Home Care for life is a goal
To improve performance of steps of Instrumental Activities of Daily Living (IADL’s) and leisure activities and to increase confidence in completing these activities.
Prioritize IADL’s/leisure hobbies where Anne would like to increase participation/independence
Identify meaningful and organized life participation goals that will guide speech therapy services, along with potential medical services in the future (e.g., occupation therapy)
Prioritize supports in the home environment, but also plan for potential future needs
Plan
Tom and Anne’s To-do list-In Process
Tom and Anne’s To-do list-Completed
- Weekend Family Visit (DONE)
- Create scripts for each family member (questions/key words)
- Provide brief bullet points to family members regarding communication tips:
- 1:1 conversations are best
- Anne may leave group conversations (e.g., meals) for a break
- Limit the number of questions you ask Anne.
- Give Anne plenty of time to speak. Wait 5-10 seconds during pauses in conversation. Anne may be collecting her thoughts before starting a new sentence.
- Create scripts for each family member (questions/key words)
- Label plants in garden (PARTIALLY COMPLETE–TO CONTINUE IN 2024)
- Communication Book: Verb brainstorming template
- Susan and Tom: Add verbs to template (Becky & Maureen will create and share)
- Present template to Anne. She circles verbs she wants included in the Communication Book. (DONE)
- Caregiver Hiring
- Continue to discern whether to hire a caregiver in the more immediate future (DECISION MADE TO HIRE IN OCTOBER)
- Work with Maureen to edit the draft of PCA application at 7/24/23 meeting (DONE)
Susan’s To-do list
- Using Becky’s sample, Susan can assist in making flash cards for Anne for the many plants and flowers in the gardens around your home. (DONE FOR NOW)
- Aid, as needed, with simplifying recipes for ease of use and readily-available assistance
Becky and Maureen’s To-do list
- PCA application (Maureen) (DONE)
- PCA training plan (Becky and Maureen)
- PCA daily log (Maureen)
- PCA weekly activities planning guide (Becky and Maureen)
- Create verb list and template grid and share with Tom/Susan (Becky and Maureen) (DONE)
- Maureen will complete in-depth vetting of Day Kimball Healthcare at Home (adjacent to Botta & Assoc.) www.daykimball.org/locations/day-kimball-healthcare-at-home/
Speech-Language Therapy and Communication Plan
We will document all communication strategies that have been recommended by Kim Winter, MS, CCC-SLP, in addition to general life participation strategies we discuss during your consulting meetings. We will also include important communication priorities for follow-up.
- Kim and Susan will collaborate on all aspects of Anne’s ‘TD Snap Aphasia’ app from which Anne’s Communication Book pages will be printed. (To-do lists for all can be updated as plans proceed.)
- Compile a list of important words/names in preparation for creating a lexicon system with Kim
- Verbs have been increasingly more difficult for Anne. Becky has noted including an “action verbs” section in a Communication Book has been helpful for people in the past. In addition, Becky recommends talking with Kim to get her expertise on this
Maureen and Becky’s Long Term Plan
- Becky will reach out to Kim Winter, MS, CCC-SLP to see how we can support her Speech Therapy services. Becky will also send Kim our Aphasia Resource Kit as a professional courtesy.
- Maureen will continue to work on cooking strategies and research freshly-prepared meal service companies, as needed.
- Maureen will work with Tom, Anne and Dr. Candow on Dementia Care Directive and MOLST form. Anne’s preferences can be viewed here: https://docs.google.com/document/d/19egXqXPrERio_KncKSZwbsev9iEftrKbmIIA1ZNIiAE/edit?usp=sharing
- We will work with Tom and Anne to educate and bolster any in-home private-pay personal care and homemaking services to support Anne’s goals, build a relationship with Tom, Anne, their family, and care team, and help to prevent Care Partner burn-out.
- We will develop and manage comprehensive individualized care plan which will integrate goals of all care team members
- We will help to identify appropriate OT services in home area to evaluate and complete activity analysis.
- We will provide PPA education and communication strategy training to all care team members as necessary
- We will provide education to friends and family: useful strategies to help increase success and comfort with conversation; education regarding environmental alterations which can help with success with communication; any other training which would be appropriate
- At the appropriate time, Maureen will complete in-depth vetting of medical supports that may be needed in the future, including memory care facilities and home services in the Eastford, CT area to ensure Tom and Anne have updated information to make any decisions on alternate living arrangements or in-home care, should the need arise. The following initial list has been provided by Tom.
- Pierce Care (includes Memory Care?) https://www.piercecare.org/
- Westview Commons https://www.westviewcommons.com/
- Day Kimball Healthcare at Home (adjacent to Botta & Assoc.) www.daykimball.org/locations/day-kimball-healthcare-at-home/
- Westview Health Care Center https://westviewhcc.com/
Tom and Anne’s Long-Term Plan
- Using the communication and activity logs, comment on any challenging situations that arise.
- During therapy sessions with Kim Winter, MS, CCC-SLP, share any suggestions from Becky that were discussed during our meetings.
- Share this Resource Page with any one you would like on your care team.
- Please talk with your elder law attorney should you wish to draft an employment contract. (DONE)
- Write down names and words that are important to Anne as related to items in the Aphasia Resource Kit Part 1 (pages 11-16).
- Consider message banking/digital recording of Anne’s voice; discuss with Becky and let Kim know if you would you like to pursue this.
- Look at sample magazine content from Becky and provide feedback. (Subscribed to The Week (Junior) and enjoying it.)
- Try cooking simplified recipes from the “6 step” recipe book or a favorite from home.
- Email two to three of your favorite recipes to Becky and Maureen. They will provide an example of how to simplify the recipe instructions. Hold for now
- Try setting up and listening to an audio book. Hold for now
Current Functioning
Using the telephone – not much, very difficult due to aphasia, Tom does most.
Shopping – does fairly well, joint effort
Cooking – a passion, increasingly a shared effort, timing/sequencing/attention issues. (Trialing simpler recipes and more aphasia-friendly recipe formats.) We talked about the idea of picking one favorite recipe. Tom and Anne can go through recipe and have Anne circle the steps she would want Tom to help with. Then, Tom and Anne can try cooking the recipe together to see how it goes. Anne may be starting Meals on Wheels 5 days/wk. Tom and Anne visit Tom’s sister Susan for meals as well
Housekeeping – mostly a hired bi-weekly service, Anne still does laundry, ironing, etc.
Transportation – no longer drives, attention/multitasking issues, Tom does it all.
Taking medication(s) – yes, mostly on her own.
Managing finances – no, attention/acalculia issues, Tom does it all.
Tom attends all medical appointments, and assists with communication, as necessary.
FaceTime – important to her, but very stressful and tiring. Uses topic/reminder lists.
Since diagnosis, she has given up knitting, but would like to try it again, as it was one of her passions.
She has begun reading Harry Potter series, with good success and enjoyment. (Subscribed to The Week (Junior) and enjoying it.)
She is a big consumer of podcasts.
She is slowly working her way through 1000 piece jigsaw puzzles. Recently purchased a 500 piece puzzle.
Anne will begin participating in yoga class with Donna (right/left frustration)
She tires easily and sleeps a lot. (Less afternoon naps with summer gardening.)
She is quite healthy at 81 years young.
Apple Music library set up by Susan, providing Anne with easy access to hundreds of albums from her CD collection
UConn Book Club-Anne will try the class again to see if it is a good fit. The current class is weekly and runs through early December. There is also a class in the spring that will be offered .
With Winter coming, discussion of volunteering at local nursery. Becky suggested trying to set up an indoor plant area.
Questions for Medical Professionals
Life Participation Goals and Strategies
- We will document all communication strategies that have been recommended by Kim Winter, MS, CCC-SLP, in addition to general life participation strategies we discuss during your consulting meetings.
- Anne has identified the following as priorities to work on:
-Cooking: Simplified recipes, Aphasia-friendly text and font, prep steps
-FaceTime: Mental prep for relaxation; try standing; use a step-wise approach
-Reading: Novels with easier reading level have been successful; large print books; shorter reading sessions, line marker to help keep place
-Yoga: To be addressed following above priorities
-Knitting: To be addressed following above priorities
Potential Future Needs and Concerns
- Occupational therapy
- Physical therapy
- Mental health counseling
- Social worker
- Homemaking
- Personal care
- Nursing care
- Palliative care
- Assisted living
- Memory care
- Nursing home
- Hospice care
- Volunteers
- If there are challenging conversations/topics, please let us know of your comfort level with the discussion and your preferences as to who would like to be involved in the conversations. We understand that there are always varying levels of readiness with addressing difficult issues.
Support for the Caregiver
Respite and a supportive community assist with preserving mental and physical health of the caregiver. Respite may come in the form of a daily, routine leisure activity in which your loved one will independently engage, a friend or relative who will spend time with your loved one, or a formal community program for engagement. Knowing your loved one is safe and content will allow you take time to care for yourself to complete necessary errands or engage in work or leisure tasks with full attention. Support groups will allow you to find a safe space to discuss common issues, problem solve with others, and create a network of resources.
Anne’s Patient Support Group Memberships:
- NAA – PPA Chats, twice monthly
- Cognitive Concierge – PPA Chats, twice monthly
Tom’s Caregiver Support/Group Memberships:
- NAA – PPA Chats, twice monthly
- Cognitive Concierge – PPA Chats, twice monthly
- Boston AFTD – FTD support groups, weekly
- Northwestern’s AFTD – PPA support group, monthly
- Nadina Gronback, CNA-Personal Care Attendant (Starting weekly October, 2023; schedule: Mondays 9 am-1 pm; supported by Cognitive Concierge)
- Mesulam Center at Northwestern University: PPA Tele-Savvy Pilot Intervention–Late July to early September, 2023
Team
Tom Latham – Caring spouse, health care proxy
David Candow, MD – Primary Care Physician – Joseph Botta, MD & Associates
- Semi-annual appointments (November/May), and as need arises. Guided by MGH regarding Anne’s FTLD/PPA.
Kim Winter, MA, SLP – Providing therapy (remotely) – Hospital for Special Care
- Currently weekly SLP sessions, but will vary over time. Supported by MGH SLPs and Cognitive Concierge.
Brad Dickerson, MD – Director & Behavioral Neurologist – MGH FTD Unit
- MGH team leader, semi-annual appointments (February/August, coinciding with PACT Study SLP and Neuro-psych evaluations) and as need arises. With his team, prepares and maintains Anne’s Care Plan. Keeps Dr. Candow informed about Anne’s FTLD/PPA.
Rose Gallagher, RN – Nurse, assistant to Dr. Dickerson – MGH FTD Unit
- MGH team member, handles MGH Portal question for Dr. Dickerson.
Megan Quimby, MS, CCC-SLP, Director of S & L Pathology – MGH FTD Unit
- MGH team member, provides guidance and support to our local SLP.
Daisy Hochberg, MS, CCC-SLP, Founding SLP – MGH FTD Unit
- MGH team member, provides guidance and support to our local SLP.
Katie Brandt, MS, Director of Caregiver Support – MGH FTD Unit
- Available for half hour one-on-one caregiver support sessions via Zoom.
Amy Marchesano, LMHC, Caregiver Support Specialist – MGH FTD Unit
- Available for half hour one-on-one caregiver support sessions via Zoom.
Brian Perkins – Anne’s son in Vermont, secondary health care proxy
Susan LaSante – Tom’s sister – ‘Our’ Carer and an Assistive Technology Specialist
Nadina Gronback, CNA-Personal Care Attendant
- Starting weekly 10/2023; Mondays 9 am-1 pm
Cognitive Concierge-Becky Khayum, MS, CCC-SLP and Maureen O’Neil Brown, MS, OTR/L
Team Information
MGH Care Plan (February 2023)
Recommendations:
– Speech therapy
– Continue PACT study
– Continue efforts using physical techniques such as yoga to manage frustration and stress over symptoms (she doesn’t want to do therapy or take medications)
– Consider neurobooth research at follow up
– Consider ALLFTD referral
– Follow-up: 6 months
Family Supports
Anne’s oldest son:
Rand & Yo Perkins in Forest Hills, Queens, NY
Financial planner in own business
Isabella Perkins in advertising, NYC
Mark Perkins at Morgan Stanley, NYC
Michael Perkins at a financial planning firm, Philadelphia, PA
Next:
Brian Perkins & Chris Staats, MD, in Burlington, VT
Musician – eclectic career performing, teaching, etc.
Ella Staats a creative writer, artist, and musician, Portland, Oregon
Youngest:
Scott Perkins & Ginger in Roanoke. Va
Environmental Engineer, international firm
Connor Perkins in computer science, Virginia
Kai Perkins at Colorado State University, environmental interests
Hiking Vacations-US National Parks & Internationally
Resources and Information
PPA Tele-Savvy Caregiver Manual (under development) & Power Points
What if it’s not Alzheimer’s? A caregiver’s guide to dementia (2022) Edited by Gary Radin and Lisa Radin
Primary Progressive Aphasia: Symptoms beyond Language
Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus.
Positive Behavior Support For Individuals With Dementia
Guiding Occupational Therapy Practice for People Living with Dementia in the Community
The Speech-Language Pathologist’s Role in FTD Care – Becky Khayum
The Role of Occupational Therapy in FTD Care – Maureen Brown
The Physical Therapist’s Role in FTD Care – Erica Pitsch
Caring for Another
On Grief and Grieving Kübler-Ross, Elisabeth and Kessler, David
The 36 Hour Day Mace, Nancy L. and Rabins, Peter V.
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Your Consultants
Becky Khayum, M.S., CCC-SLP Becky.khayum@mycognitiveconcierge.com
Maureen O’Neil Brown, MS, OTR/L, CBIS Maureen.brown@mycognitiveconcierge.com
http://www.mycognitiveconcierge.com
Office: 331.256.9134
Direct: 773.354.7539
Team
Gary, husband of more than 50 years
Daughter-Lisa, their partner, and daughter in Portland, OR
Daughter-Kristen, her husband, and three kids in Burbank, three miles from Bette Ann and Gary
Eric Feit, MD -Primary Care Physician
Dr. Ringman- Neurologist
Katherine Wong, MD- Neurologist (appointment 12/19/22)
Michelle Ross, CCC-SLP (last appointment 4/25/23)
Samantha McGovern, CCC-SLP
Sandy Wyle, CCC-SLP (not currently seeing)
Elaina Shu, CCC-SLP (not currently seeing)
Current Medications
Galantamine- 2 mg BID, increased recently to 4 mg BID
Carbidopa-Levodopa/Sinemet-Controlled Release (doubled the dose at start of April, with tremors decreasing)
Melatonin gummies-one before bed (5 mg)
Recommended Medications
Gabapentin (This is something you wanted to discuss with Dr. Wong)
Lexapro (Holding on this medication and trying behavior modification to decrease anxiety)
Discontinued Medications
Memantine (stopped 2020 due to intolerance)
Donepezil (stopped 2020 due to intolerance)
Carbidopa-Levodopa/Sinemet- (stopped due to intolerance)
Primidone (stopped due to intolerance)
Areas of Focus
1) You are looking to see if there is a Primary Progressive Aphasia (PPA)-trained Speech-Language Pathologist (SLP) who can work with you. You have expressed an interest in scheduling an evaluation with Samantha at MemoryCare Corp. You are also interested in finding a local SLP to help with programming and training use of an Augmentative and Alternative Communication (AAC) speech-generating device. You will be meeting with Michelle Ross, a speech therapist trained in treating folks with PPA, on 12/19/22. You will have your last appointment with Michelle Ross on 4/25/23. You started working virtually with Samantha McGovern, MS, CCC-SLP in April, 2023.
2) You would like us to come up with relevant questions for your new neurologist, Katherine Wong, MD, ahead of your 12/19/22 follow-up appointment. Dr. Wong specializes in evaluation and treatment of Motor Disorders. regarding the list of questions that would be appropriate to ask Dr., Wong, if there are any comments/questions or any areas that need clarification prior to your appointment, please email us. I will add information regarding EEG to the list that was created.
3) You are looking for ways to address the tremors and “jumps” that you are experiencing, though they are more in control compared with before. Dr. Wong has doubled your sinemet dosage at the start of April and this seems to have decreased the tremor activity.
4) You have been working on “brain health” activities and relaxation techniques but express an interest to have more involvement in daily activities (i.e.: laundry, dishes,etc.). We discussed how activity and “doing” can lead to a sense of purpose and responsibility. In addition, activities that are familiar can help the brain rest by allowing it to “coast” or not think so intently. Folks with neurological diagnoses need to work harder to perform everything. Having a mental “break” can help to save some physical and cognitive energy.
5) You have noticed some short-term memory lapses and having more information on memory might help to understand how this might affect daily life.
6) You currently have an augmentative communication device, Tobi Dynavox, but are having some issues with customer service. You are interested in learning about other devices (including Lingraphica) to see if they might be a better fit and will support you as aphasia progresses.
7) Joining in the PPA Chats with Cognitive Concierge and the National Aphasia Association is a priority
Plan
Things we will be working on:
- Updating the Resource Page
- Clarifying information on the list of questions and recommended relevant information to pass along to Dr. Wong
- Synopsis of your meeting with Maureen
- Identifying SLP’s in your area to assist with AAC training
Things you can be working on:
- You met with Maureen on 12/15/22 for your second consultant meeting. Please let us know if you have any follow-up questions from that meeting
- Please review the Resource Page when you get a moment and check for accuracy and completeness
- Please let us know when you have availability to meet in January
- Recovering from the effects of COVID-19!
- Oftentimes, a summary print-out of your MD appointment may be available . This can be helpful as much information is discussed during these appointments.
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Welcome!
Thank you for your membership with Cognitive Concierge.
I look forward to working with you!
Your ambassador is Maureen O’Neil Brown, MS, OTR/L
Maureen can be reached via email at Maureen.Brown@mycognitiveconcierge.com
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Jordan’s current team:
Family-Mom, Susan; Dad, Frank; Four siblings-closest with brother Jamie; Burnese Mountain Dog, Prada; Jordan is youngest of five children
Mark Higgison, CCC-SLP, 1x/week
Olivia, Mark Higgison’s intern-joins Jordan in activities on weekend/evenings (bowling, billiards, Starbucks, dinner, hiking, Pickleball)
Aphasia Center in St. Petersburg, Florida (Michelle, Shelly, Lauren, Laurie, Tommy) via Zoom, 2x/week
Employer in Township, Michigan, Szott Toyota, where Jordan works seven hours/day, 5 days/week detailing cars
Employer in Tucson, Arizona, pizza restaurant, where Jordan works 5pm-8pm, 3 days/week
Community businesses near home in Tucson, Arizona, including Starbucks and Viva Burrito, to which Jordan walks to, approximately 1 mile away.
Goals:
Identify and engage new speech therapist
Identify and engage Neurologist/Physical Medicine and Rehab/physiatrist in Tucson
Identify and engage private case manager
Secure increased hours at current job in Tucson or investigate options for alternate employment
Be as independent and self-sufficient as possible
Be financially independent, via jobs, investments and property holdings
Help Jordan to realize decreased necessity for using ear plugs due to decreased tinnitus
Encourage Jordan to use blue light glasses to decrease potential eyestrain when using devices
Increase engagement in support groups for those experiencing similar challenges/increase opportunities for socialization and forging friendships
Exercise with use of bicycle
Current concerns:
Hearing loss in R ear. Prior tinnitus diagnosis which has improved but Jordan continues to wear ear plugs which seem to affect his ability to take in information. A follow-up exam with audiologist might help to objectify the findings and help Jordan to understand the decreased need for his ear plug use
Jordan has been hesitant to engage in support groups which may assist in forming friendships and understanding he is not alone in his fight with aphasia
Jordan would prefer more hours at his job in Tucson
Zoom sessions are not ideal due to aphasia; however, writing down information on white board assists tremendously
Jordan has a complex medical history which may be assisted by creating a comprehensive chronological report of all treatments and providers, listing what treatments were effective. This can be used to interact with new providers and therapists. It could be possible that your previous case manager might have this information organized already.
Hobbies & Responsibilities
Walking Prada; pick up after her
Assisting with cooking/meal prep including salad, scrambled eggs, smoothies
Tracking investments, mutual funds and stocks
Gaming apps on his phone (We discussed the benefits of blue light-blocking glasses. Here are the ones that I was wearing. Click on the box below to see them on Amazon.
Working at pizza restaurant and Szott Toyota
Speech therapy with Mark and the folks at the aphasia center in Florida
Walking around community to get coffee and food
Social engagements with Olivia
Watching movies (favorites include anything with the “Rat Pack” or Owen Wilson, The Godfather, Legally Blonde, Wall Street, Titanic, The Notebook, Gladiator, The Big Lebowski, Lord of the Rings.)
Listening to music (favorites include Frank Sinatra, especially Fly Me to the Moon, Dean Martin, Ella Fitzgerald, Annie Lennox)
Interests in fields of economics, cars, music, astronomy, and Greek and Roman literature/classical studies. We discussed Ovid’s Metamorphoses. Here is a link to a version Jordan might like.
Things your ambassador will be working on
I will research the area for a new neurologist/physiatrist.
St Joseph Mercy Hospital, Ann Arbor
734-712-3456
Spoke with Makenzie, intake representative for the hospital system. St. Joe’s does have a multitude of neurologists skilled with treating folks who are living with brain injuries. To initiate the process, a referral and treatment notes from primary doctor would need to be sent to the hospital system; once they review the notes and understand the current needs, they will pair you with the most appropriate neurologist. This is a good process. There are many neurologists out there and they will often specialize in a certain field. Not all neurologists are going to be appropriate or adept at the needs of someone who has sustained a brain injury or stroke, or both. There are also locations in White Lake and Pontiac, but I wanted to check the bigger hospital as they often have more resources. During the process of review, they will look within the hospital-wide system for the best doc, so that may end up being at one of the other locations
I will investigate case managers.
Here are a few good medical case management companies to contact near Waterford Township, MI.
1) Wellspring Case Management
11209 Bellwood Dr.
Plymouth, MI 48170
734-453-1743
Joyce.mauk@wellspringcasemanagement.com
Joyce Mauk Lucas, owner
2) Abbey Consulting Rehab Case Management
2900 Union Lake Rd. Suite 103
Commerce Township MI, 48382
Office Phone: 248-880-5972
Fax: 877-800-4490
Bonnie Manincor, RN, CCM, founder
3) Charter Care, LLC
10255 WELLINGTON DR
CLARKSTON MI 48348
Charlotte Dahlstrom, RN CCM, owner
I will compile a list of support groups for aphasia.
Michigan
University of Michigan Aphasia Program
Dinah Young, Assistant Clinic Managerdinyou@umich.edu | Phone: 734-764-8440 | Fax: 734-647-2489
1111 E. Catherine St. Ann Arbor, MI 48109
Jennifer Corey, MS, CCC-SLP, Clinical Manager
Intensive speech therapy program, running Mon-Fri 9-2:50. 20- hours of individualized speech therapy and 5 hours of group therapy; Four clients/session; May currently has two openings; June currently has three openings. Slots fill up quickly, especially in the summer months. No MD order needed for speech therapy services. Private pay $23,830/month; financial assistance is available for those who qualify and application is simple, per Dinah; can also get itemized bill at end of month to submit to insurance. It does not look as though the unfriendly Carolyn from Canada is anywhere on the managerial or therapy side of this company anymore and apparently, Jennifer Corey, is both an effective manager and a skilled clinician.
Arizona
Carondelet St Joseph Hospital System
https://www.carondelet.org/locations/detail/st-josephs-hospital 350 North Wilmot Tucson, AZ
Debbie Johnsen, Speech Therapist
Debbie states that, unfortunately, both the aphasia and brain injury groups at St. Joseph’s Hospital have been suspended. She did recommend Fabi Heirsch at Aphasia Center of Tucson/Friends of Aphasia (520-730-8428). I understand you have researched this option in the past.
Speech therapy services for aphasia via the St. Joseph’s Hospital out-patient neurological team may be a good opportunity for individual therapy treatment for Jordan to adjunct therapy with Mark Higgison.
Arizona Institute for Communication and Cognitive Disorders
Phoenix, AZ Mary Jane Trunzo, CCC,SLP 602-224-0202
I wanted to talk with you both about this resource before I pursued it. Jordan turned his nose up at the idea of going to Phoenix for speech therapy. I put it on the list because it looked like a good prospect. She is a speech therapist with experience treating aphasia and sequelae of brain injury and is also a certified brain injury specialist (CBIS), which requires specialized training and yearly education. I know you will most likely be looking at December for engaging this resource, but let me know your preferences and I can reach out for you.
I will research brain injury support services in both Michigan and Arizona
Michigan
Brain Injury Association of Michigan, Macomb Support Group
Martin Zobrovitz, Support group customer service representative and brain injury survivor 586-774-0135
Angela Zender, secretary of support group 586-216-0249 Email: zboys2008@yahoo,com
Meets last Wed of the month from 6:45 pm-9:00 pm
Macomb Intermediate School District (next to Macomb College) Educational Services Center 44001 Garfield Rd Clinton Township, MI 48038
I spoke with Marty for about 45 minutes. He was very responsive to my call, ringing me back just a couple of hours after I left a message (and then apologizing because it took so long because he had doctor’s appointments.) He is a fierce advocate for making sure people who have sustained brain injuries do not feel they are alone. He spoke about the educational programs (MD coming in to speak at April meeting), the information shared (Who is a good neurologist in the area? Who has found a great speech therapist?), but more importantly, the camaraderie that has formed between members and between families. This is a vibrant and active group which strives to hold at least one social event per week. They are running an in-person group. The group also has an Occupational Therapist on staff. This sounds like an excellent opportunity for Jordan. I did not give Jordan’s information. I did not want him to feel pressured to attend, but I know the group would be welcoming and happy to have him there.
Brain Injury Association of Michigan, North Oak Support Group
Eric Noble, director of support group 248-321-7933
Meets second Wednesday of the month at 6 pm.
Auburn Hills Community Center, Carriage Room
1827 North Squirrel Rd
Auburn Hills, MI 48326
This support group is active, long-standing and small (4-10 people). The group has been virtual but Eric is hoping by April, it will be back in person. Monthly meetings include pizza, pop, and dessert. Social activities (movie group, game nights, and, pre-COVID, tickets to the Tigers games) are also a big part of this group. Eric was very helpful and was hopeful Jordan could join the group. He will be sending the activity calendar to me and I will forward it to you. Eric also explained that all support groups in the area have their meetings on separate nights to encourage people to join as many groups as possible. He also spoke highly of the Macomb group. Pre-COVID, the Fall Brain Injury Conference was held in Lansing, MI for professionals but also had a separate night for a formal dinner and dance for survivors and members of Brain Injury Association of Michigan support groups.
Arizona
Brain Injury Alliance of Arizona
Website provides detailed descriptions of each support group they run, all with the overarching goal of supporting brain injury survivors 18 and above and their family, friends and caregivers who want to meet others who are in similar situations. Will Grove is the contact person for the groups, so you can get in touch with him with questions or to RSVP to join a group. He and I also spoke for about 45 minutes and seemed confident that the support groups would be able to offer Jordan a safe space to discuss what is on his mind and share experiences with others.
Will Grove, Resource Facilitation Specialist, Certified Brain Injury Specialist 602-508-8024 ext 104
Support groups:
1). Central Tucson Brain Injury Support
Group will meet via Zoom the second Tuesday of the month, 5:30-7:00pm May be the next group to go in-person
2). Brain Cave A discussion group for men on life after brain injury. Group will meet via Zoom the first Wednesday of the month from 6:00-7:30 PM. Average age approximately 40 years old; currently around 10-12 participants
3). Statewide Brain Injury Support
This group will meet via Zoom the fourth Thursday of the month, 6:00-7:00pm Group is smaller, at around 7 participants currently
Things you can work on:
Please review this resource page. If there is any information to add or correct, please let me know. I want it to be accurate!
Please add your preferences for bookings to the calendar. Let me know if you have any questions.
Consider the Gold level service should you want to continue the membership at the renewal time.
Support for the Caregiver
Respite and a supportive community assist with preserving mental and physical health of the caregiver. Respite may come in the form of a daily, routine leisure activity in which your loved one will independently engage, a friend or relative who will spend time with your loved one, or a formal community program for engagement. Knowing your loved one is safe and content will allow you take time to care for yourself to complete necessary errands or engage in work or leisure tasks with full attention. Support groups will allow you to find a safe space to discuss common issues, problem solve with others, and create a network of resources.
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