Thank you for your membership with Cognitive Concierge.
I look forward to working with you!
Your ambassador is Maureen Brown, MS, OTR/L
Maureen can be reached via email at Maureen.Brown@mycognitiveconcierge.com
What is Frontotemporal Dementia?
CRNP-coming to house in mid-September
Phlebotomy in mid-September
Neurologist-appointment in Bonita Springs in late September
Personal Trainers: Lindy, Brian
Joan, dietician friend
Speech Therapists: Adam, Leann and Amanita
Palliative care 1x/month
Art Therapist: Ava
Neuropsychologist: Anne Welles
Other MD specialists: Gynecologist, Urologist
Co-worker and OT friend, Janet
Maintain language function as long as possible
Be safe and comfortable
Be aware of her main needs
Increase in proprioception/kinesthetic and visual-perceptual issues over last week
Listing to the left
Right sided weakness
Stuffing of food and potential for choking hazard
Obsessive-Compulsive Behaviors (OCD) including counting items, focusing on animals
Avoids looking at self in mirror
Childlike affect and high-pitched voice
Disinhibition with walking around house at shower time
Recent incontinence of bladder and feces
Things to work on this week
Take Adam’s great suggestions for safety with swallowing and with techniques for decreasing spitting. Since almonds are a pocketing issue at this point, agree to take them off the menu. Almond butter with fruit may be a good nutritional alternative, but please check with Adam on whether it is a safe consistency.
Consider asking Family Doc/psychiatrist about appropriateness of low-dose SSRI to target OCD behaviors
Consider safety walking down stairs and alternatives (Is it nearing the time to transition bedroom to downstairs in time for Maria’s sister come to visit? Will moving Maria’s puzzle area to living room make sense as well? Does this necessitate landscaping considerations so she can see the street view that she loves? Slippers with a back and non-skid sole are safer than slip-on type with smooth sole)
Glad the back stoop extension project is in the works. Should be safer for Maria to have a bigger landing but, Dan, watch yourself with the new footing so you don’t fall!
Consider safety in the bathroom given recent change in proprioception/kinesthesia (Are there grab bars installed in shower? Is there a good non-skid mat on the shower floor?Would a shower chair and hand-held shower be appropriate? Is there room for a chair in the shower area for Maria to dry herself off in seated position? Versa frame around toilet may help with increasing safety and decreasing feeling of falling with transfers on and off the toilet.)
Safety with walking should include the use of a gait belt.
Appointment for urodynamic assessment of urinary function
Glad that Maria went to see the podiatrist and pleased there is an order for PT. We discussed having Dawn assess safety with walking and possibly training on an assistive device, if appropriate. A hemi-walker (“side walker”) may be a possibility. Here is a picture. https://www.alimed.com/sidewalker.html Other options might include straight cane or large-based quad cane, shown here: https://www.alimed.com/stable-base-quad-cane.html?pid=126508
New issues with increase in muscle tone on right side. Right arm and right foot appear to have spasticity with increase in flexor tone. This makes using arm for her exercises (downward dog, plank) more difficult. In addition, inversion of right foot may cause difficulties with walking, balance and comfort. Recommend a follow-up appointment with Dawn, Maria’s PT, to address new changes. Discussed ways spasticity is often managed, including kinesiotaping, use of ankle-foot orthosis, and a medication called oral baclofen. Working on extension exercises (extending elbow using triceps muscles, extending wrist using wrist extensor complex) and stretching exercises (pushing bar or ball with both hands away from the body, stretching both arms overhead on bar or wall, child’s pose, shivasina with arms out to sides, “snow angels” on floor or bed) will be helpful to keep brain and arm and leg muscles connected.
Lindy has had success with use of a timer and consistent routine for helping Maria to use the bathroom and limit accidents.
Despite Maria’s increased difficulty with maintaining attention, decreased balance and her increased spasticity, having her still involved in exercise programs, socialization programs and completing any activities she can at home to her fullest level of safety and independence is extremely helpful to maintain and reinforce her abilities. Routine, as you have experienced, has been and will continue to be critical to decreasing anxiety, structuring the day with meaningful activities and allowing Maria to look forward to good experiences.
You may want to ask about the appropriateness of gabapentin for pain with a neurological root cause.
Please talk with Adam about your concerns regarding communication. There are a number of different devices and “low tech” options for anticipating the need. I do love the talking clock and I think Lindy’s voice would be perfect for getting Maria up and moving!
Things your ambassador will be working on
Please let me know if there is anything I can do in the future. I will pass along your suggestion for having a PT on the team to provide information in that realm.
Maria does not have the same success with using the bathroom consistently and limiting accidents when using the bike. She tends to keep going to get to a round number and will often ride through bodily signals to use the bathroom. Some studies I have read include suggestions to use bathroom not more than 20 minutes after eating and to toilet every 1-2 hours.
Offer additional semantic strategies for word finding/communication. Adam will be an excellent resource for this.
Research additional behavioral strategies to limit spitting incidences. Adam will also be helpful in this realm as well.
Dan mentioned that having new websites to view regarding FTD and semantic issues is helpful for gaining additional information. Additional resources for education are below.
Discussion of respite included church program “A time for grace” for 2 hours of activities. Other respite/socialization has been accomplished through friends coming over for dinner and adult beverages in the backyard. A personal care attendant (PCA) had been tried in the past, but Maria was hesitant. If she allows, a PCA would be helpful.
Things we have accomplished
Connect with Janet to discuss her findings of late when playing cards with Maria
Addressing proprioception/kinesthetic issues with CRNP and neurologist in September
Maureen reaching out to Maria’s team and friends to introduce self
Identify strategies to discourage habit of overfilling mouth when eating by having her put one item in mouth then complete an eight count of chewing prior to swallowing and taking more food
Cut foods up into small bits (especially grapes)
Tactile cues for righting herself in space (ie: touching side of head to gently guide her to the right)
Assisting Maria when she has difficulty figuring out how to start a task (put theraband loop at ankles and give her directions to “pull up like underwear” to her knees; assisting with shoes if the situation is time-limited or if she becomes frustrated with the process, otherwise, allowing time and space to complete the task on her own–bottom step with foot propped has worked well, as has proceeding with right then left shoes)
Forwarded copy of Anne Wells, PhD neuropsychological report to Maureen
Root cause of changes in proprioception/kinesthesia most likely due to progression of disease process into more of temporal and parietal lobes but neurology will be able confirm findings
Magnesium can cause loose stools and can complicate a bowel program
Maria may be having difficulty with identifying sensory messages in a timely or appropriate manner (Maria may interpret “touch” as “pain”; Maria may not get proper signaling from the bladder to void)
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.