Category Archives: Living with a Neurological Condition

Exercise and dementia (research updates from Alzforum)

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This post may be of general interest since many of us are dealing with dementia or will be dealing with dementia at some point in our lives.

At the recent Alzheimer’s Association International Conference in Washington DC (mid-July), a lot of research was presented on exercise.  The Alzforum has two good summaries of the research.

The first summary is here:

alzforum.org/news/conference-coverage/exercise-boosts-cognition-symptomatic-disease

The first summary examines research into whether Alzheimer’s disease can be tempered by aerobic exercise and whether dementia can be avoided through exercise:

“Speakers…presented new evidence that regular aerobic exercise can help people in prodromal disease stages maintain their cognition, while for those with full-blown dementia it relieves neuropsychiatric symptoms. Some studies provided hints that exercise can also hone thinking at the dementia stage, but only if the participants reach moderate intensity heart rates during their workout. Exactly how exercise helps the brain is still not known, but several talks reported better cerebral blood flow and improved structural and functional connectivity in exercisers, and even some signs that six months or more of physical activity can slow pathology.  Researchers agreed that the duration and intensity of an exercise intervention are crucial to determining its effects. For aerobic exercise in particular, the field is standardizing methods and narrowing in on the appropriate dose to prescribe. Some believe supervised exercise classes could become part of the standard of care for people with cognitive problems. … Researchers have few doubts now that exercise protects normal older adults against brain decline.”

(prodromal = before symptoms appear)

The second summary is here:

alzforum.org/news/conference-coverage/can-exercise-slow-progression-alzheimers-pathology

The second summary explores research into whether exercise can slow the progression of a neurodegenerative process:

“Overall, the findings indicated that working out enhances vascular brain health and connectivity, implying a direct benefit to brain structure and function. Data were mixed on whether exercise slows the progression of underlying Alzheimer’s pathology, however. One six-month study of moderate aerobic exercise reported a drop in cerebrospinal fluid tau in cognitively impaired people, but a shorter intervention failed to budge brain amyloid in people with AD. In general, speakers agreed that the cognitive boost from exercise likely comes from diverse benefits on several different aspects of brain function, something that would be hard to match pharmacologically.”

Both summaries are worth reading if exercise research is of interest.

While this may be a good day to go to the gym, this is probably not a good day to exercise outdoors.

Stay cool,
Robin

Falls and Dysphagia (new publication co-authored by BSN)

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This post will be of interest to those dealing with falls and/or dysphagia (swallowing difficulty).

Local support group member Phil Myers and I co-authored a case study on falls and dysphagia in the latest issue of the Association of Frontotemporal Degeneration (AFTD) newsletter.  The case study is about “Jackie Riddle” — a composite of my father’s PSP symptoms (confirmed through brain donation) and Phil’s wife Jackie’s PSP symptoms (also autopsy-confirmed).  Though “Jackie Riddle” had PSP, since the focus of the case study is on falls and dysphagia, all of our BSN group members, regardless of diagnosis, will find something of value here.

The newsletter is written for healthcare professionals but I’m fairly certain the language is understandable.  We assumed that healthcare professionals are completely un-knowledgeable about PSP, fall prevention, and treatment of dysphagia.

There are also sections in the newsletter specifically for healthcare professionals working at care facilities.  So if any of you has a loved one in a care facility, those sections may be particularly helpful for staff.

The last two pages of the newsletter are my ideas for practical things that can be done about falls and dysphagia.  Again, though it’s titled “in PSP,” these ideas apply to all four disorders in our BSN group.

Check it out; it’s hot off the presses:

www.theaftd.org/wp-content/uploads/2015/07/PinFTDcare_Newsletter_summer_2015.pdf

Robin

“Could a vitamin or mineral deficiency be behind your fatigue?” (short article, Harvard)

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Fatigue can be a symptom in all of the disorders in our local support group.  Today’s Healthbeat email from the Harvard Medical School points to one mineral and two vitamin deficiencies that may cause fatigue.  It might be worth having an MD check one’s vitamin levels to rule these out as problems if fatigue is present.

Robin

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Excerpts from

Could a vitamin or mineral deficiency be behind your fatigue?

Healthbeat
Harvard Medical School
August 1, 2015

The world moves at a hectic pace these days. If you feel like you’re constantly running on empty, you’re not alone. Many people say that they just don’t have the energy they need to accomplish all they need to. Sometimes the cause of fatigue is obvious — for example, getting over the flu or falling short on sleep. Sometimes a vitamin deficiency is part of the problem. It might be worth asking your doctor to check a few vitamin levels, such as the three we’ve listed below.

* Iron. Anemia occurs when there aren’t enough red blood cells to meet the body’s need for oxygen, or when these cells don’t carry enough of an important protein called hemoglobin. Fatigue is usually the first sign of anemia. A blood test to measure the number of red blood cells and amount of hemoglobin can tell if you have anemia. The first step in shoring up your body’s iron supply is with iron-rich foods (such as red meat, eggs, rice, and beans) or, with your doctor’s okay, over-the-counter supplements.

* Vitamin B12. Your body needs sufficient vitamin B12 in order to produce healthy red blood cells.  So a deficiency in this vitamin can also cause anemia. The main sources of B12 are meat and dairy products, so many people get enough through diet alone. However, it becomes harder for the body to absorb B12 as you get older, and some illnesses (for example, inflammatory bowel disease) can also impair absorption. Many vegetarians and vegans become deficient in B12 because they don’t eat meat or dairy. When B12 deficiency is diet-related, oral supplements and dietary changes to increase B12 intake usually do the trick. Other causes of B12 deficiency are usually treated with regular injections of vitamin B12.

* Vitamin D. A deficit of this vitamin can sap bone and muscle strength. This vitamin is unique in that your body can produce it when your skin is exposed to sunlight, but there also aren’t many natural food sources of it. You can find it in some types of fish (such as tuna and salmon) and in fortified products such as milk, orange juice, and breakfast cereals. Supplements are another way to ensure you’re getting enough vitamin D (note that the D3 form is easier to absorb than other forms of vitamin D).

Anticipatory Grief – three short articles (and some excerpts)

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Anticipatory grief is the loss we feel while our loved one is alive and dealing with a life-threatening illness.  This grief can be felt by caregivers, patients, family members, friends, etc.  Someone recently posted several articles on the topic of anticipatory grief to an LBD-related online support group.

The three short articles are:

“Coping As You Anticipate Loss”
By Marty Tousley, 2009
www.opentohope.com/coping-as-you-anticipate-a-loss/

“What is Anticipatory Grief”
By AZ Center for Loss & Grief
www.griefcounseling.us/what_is_grief.htm

“Anticipatory Grief Symptoms: What’s the Big Deal?”
By Harriet Hodgson, 2005
www.careforce.ca/Anticipatory%20Grief%20Symptoms.pdf

I’ve copied below a few excerpts from these three resources.  If you only read one, I’d recommend the Marty Tousley article (or the excerpts).

Robin

 

www.opentohope.com/coping-as-you-anticipate-a-loss/

Excerpts from
Coping As You Anticipate A Loss 
By Marty Tousley, 2009

Grief does not wait for death to happen; it occurs both in anticipation of and following a loss. Extended illness, disability, severe accidental injury, a terminal diagnosis or the aging and decline of an elderly family member can produce what is known as anticipatory grief and mourning. We find ourselves reacting and continually adapting not only to an expected loss, but to all the losses – past, present, and future – that are encountered in that experience.

Anticipatory mourning begins as soon as we become aware that death may happen. It begins when a life-threatening illness is diagnosed or a terminal prognosis is given, we understand that there is no cure, and we realize that death is likely or inevitable.

Issues of grief and loss are inherent in the care-giving process, and grief is experienced by everyone involved — whether we are the patient grappling with the illness or disability, or the family member, partner, close friend or caregiver who is intimately connected with and looking after our loved one. We are coping not only with our own feelings of grief and loss, but also with physical and mental fatigue. We may feel overwhelmed with all the financial, legal, medical and personal responsibilities associated with care-giving.

In some ways, anticipatory mourning can be harder than the grief we experience after the death, because when we are waiting for the death to happen, we are on constant alert, living in a state of emergency over an extended period of time.

On the other hand, this period offers the benefit of preparation time, as we and those close to us begin to think about our life without the one who is dying, and how we and our loved one can use the time remaining to reflect, to prepare for the future, and to finish unfinished business.

www.griefcounseling.us/what_is_grief.htm

Excerpts from
What is Anticipatory Grief? 
By AZ Center for Loss & Grief

Anticipatory grief is … a grief we keep to ourselves. We want little active intervention. There is little or no needs for words, it is much more of a feeling that can be comforted by the touch of a hand or silently sitting together. Most of the time in grief we are focused on the loss in the past, but in anticipatory grief we occupy ourselves with the loss ahead.

When a loved one has to undergo preparatory grief in order to prepare for the final separation from this world, we have to go through it too.  We may not realize it at the time. … Even if you go through any or all of the five stages ahead of the death, you will still go through them again after the loss.

…Experiencing anticipatory grief may or may not make the grieving process easier or shorten it. It may bring only feelings of guilt that we were grieving before the loss actually occurred. … Not everyone experiences anticipatory grief and if they do, certainly not in the same way.

www.careforce.ca/Anticipatory%20Grief%20Symptoms.pdf

Excerpts from
Anticipatory Grief Symptoms: What’s the Big Deal?
By Harriet Hodgson, 2005

You don’t talk publicly about your grief because you’re afraid of the reactions you’ll get.  It takes courage to    “grieve in a society that mistakenly values restraint,” according to Judy Tatelbaum, author of “The Courage to Grieve.” 

…The worst symptoms of all — anxiety and dread — illustrate this point.  Robert Fulton, PhD and Robert Bendiksen, PhD discuss anxiety in their book, “Death & Identity.”  You expect your loved one to die, they explain, but “exactly when it will take place is not known.”  …  If you feel this badly now, how will you feel when your loved one is gone?

Talking about feelings will help you to relieve anxiety.  Instead of brooding alone, talk with a trusted friend.  Your church and local hospital or hospice may have grief support groups.

…Depending on your loved one’s illness, you may grieve for a year, five years, 10 years, or more.  …

A sudden death hits you like an explosion, [Edward] Myers explains, and sends you into shock, whereas a slow decline “arrives more like a glacier, massive and unstoppable, grinding you down.”  Dealing with the symptoms of anticipatory grief gets harder with each passing day.

“Are You Grieving” (a checklist)

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This is a checklist of the physical, mental, and behavioral symptoms of grief.  (It was posted to the PSP Forum recently.)

www.caregiverslibrary.org/Portals/0/ChecklistsandForms_AreYouGrieving.pdf

Are You Grieving?  A checklist of the physical, mental, and behavioral symptoms of grief. 
by FamilyCare America

Note that lots of hospice agencies run grief support groups.  Often, these groups accept anyone in the community — not just clients of that hospice agency.

Robin