The MSA Coalition 2nd Patient/Family Conference of 2020 (October 23-24)

The MSA Coalition is holding a second patient/family conference this year on October 23-24, 2020. This second conference is in conjunction with Dr. Thomas Chelimsky and the team at the Medical College of Wisconsin. The conference is free. Robin Riddle with Brain Support Network will be speaking about the value of MSA brain donation. Register for the event here.

“Uncertainty fuels anxiety” (Washington Post)

The uncertainty many of us feel about the pandemic reminds me of the uncertainty many of us face in caregiving situations.  We don’t know what’s going to happen next.  According to this recent Washington Post article, uncertainty fuels anxiety and can leave us exhausted.
Here’s an interesting excerpt about being flexible in how you cope:
“[The] people who cope best with uncertainty are the ones who have a more flexible coping style.  … ‘Sometimes fixing the problem is good, sometimes being proactive is good, sometimes managing your emotions with self-care is good, and in some cases even avoidance can be fine.  But doing the same thing regardless of the situation is not going to work.  In uncontrollable situations, focusing on what you can control, like your reactions, will be best.'”
A few strategies are shared, including:
  • taking a day at a time
  • breaking down the problem into its component parts and try to find ways to deal with those specific parts
  • cognitive behavioral therapy
  • viewing uncertainty as a challenge, rather than as a threat

Health
Uncertainty fuels anxiety, causing your mind to conjure up scary scenarios. The pandemic can magnify the angst.
By Christie Aschwanden
Washington Post
September 12, 2020 at 7:00 a.m. PDT

Genetic Testing Resources

Brain donation is the ideal way to obtain a confirmed diagnosis while also enabling research into neurological conditions.  Many families who contact us about brain donation want genetic testing.  You have likely been directed to this page as the most efficient way to provide you the information about genetic testing.

The brain bank we work with, Mayo Clinic, does do genetic testing on donated brain tissue but does NOT share these results with families.  It is not allowed to share the results with families because the brain bank is not a CLIA-certified lab.  CLIA-certified labs are required to provide genetic counseling.  We don’t believe that any brain bank is CLIA-certified.

If there is a strong family history of dementia, Mayo definitely does genetic testing prior to the preparation of a neuropathology report for the family.  In these reports, Mayo often says things like “we generally see this particular pathology in those with a certain genetic mutation,” or “given the family history of dementia, we recommend your family consider genetic testing.”  Of course these are strong clues that something is being inherited in the family.

So what can a family do to accomplish genetic testing?  The best is to arrange for genetic testing while the person is still alive.  You might try one of the options below.

If your family member has passed away and his/her brain has been donated, if your family can find a reputable testing lab that can accept frozen brain tissue in slides, then the legal next-of-kin can direct the brain bank (including the Mayo Clinic) to send tissue to the lab for genetic testing.  Your family pays for the testing (but not the shipping).  You can ask any of these options below if they accept frozen brain tissue and can do genetic testing from that.

Let us know if you have additional questions but note that we are not genetics experts or genetic counselors!


Athena Diagnostics

Marlborough, MA
Phone: 800-394-4493, Option 2
Email: [email protected]

Invitae

San Francisco, CA

Phone: 800-436-3037
Email: [email protected]
Office Hours: M-F 5am to 5pm PT

Offers pre-mortem testing and genetic counseling for $250.  This lab is CLIA-certified.

 


Prevention Genetics

Marshfield, WI

Phone: 715-387-0484
Email: [email protected]
Office Hours:  7:30 am – 5:30 pm CST

Offers pre-mortem testing of 18 genes associated with dementia (“dementia panel”). Or testing specific to the suspected genetic disorder (“custom panels”).

Offers post-mortem testing

Offers pre-mortem banking for the case when testing is not desired at the present time

“Can Caregiving Cause PTSD?” (NextAvenue)

This is an interesting article from NextAvenue (nextavenue.org) on post-traumatic  stress disorder (PTSD) being caused by caregiving.  Advice given to family caregivers includes:
  • Don’t put the brakes on your personal life and feelings.
  • Be aware of your thoughts and your feelings.
  • Take regular breaks, even a short walk or enjoying personal time alone.
  • Get some help, from an aide or respite care.
  • Have a healthy diet, get adequate sleep, get regular exercise, enjoy nature, and engage in pleasurable activities.
The full article is copied below.
Robin

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CAREGIVING

Can Caregiving Cause PTSD?
What experts say and what role the pandemic is playing

by Juana Poareo, Freelance Writer
August 21, 2020
NextAvenue

Kaci Smith, 36, recalls the gradual emergence of her PTSD symptoms about three years ago when she’d been caring for her mother at home following her mom’s 2012 stroke.

“It would be things like almost feeling like a panic attack,” says Smith, a Rochester, N.Y. teacher. “If she would complain of leg pain, I would think, ‘Oh, no. It’s a blood clot. We’re going to have to go through all this medical stuff again.’”

Smith, who stopped working when COVID-19 forced the U.S. into lockdown, has been a 24/7 caregiver for her mother during the pandemic and is on anti-anxiety medicine.

As the “Caregiving in the U.S. 2020” report from AARP and the National Alliance for Caregiving documented, being a family caregiver can be high stress. It can also, in some cases, bring on PTSD (Post Traumatic Stress Disorder), an anxiety disorder caused by trauma. PTSD symptoms typically range from flashbacks and recurring dreams to insomnia and poor concentration.

Researching the Caregiving PTSD Link

Exactly how often caregiving can lead to PTSD is unknown.

“There remains very little research or attention on PTSD among caregivers,” says Dr. Ranak Trivedi, an assistant professor of psychiatry and behavioral sciences at Stanford University.

But, Trivedi adds, “As clinical psychologists, we are also recognizing that chronic stress that is unrelenting — such as through caregiving — can lead to PTSD.”

Jennifer McAdam, an associate professor in the School of Nursing at Samuel Merritt University who co-authored a study about family caregivers of ICU patients, says more research needs to be conducted to establish the true impact of caregiver PTSD.

“It is difficult and challenging to get money to study families as this area is typically not considered a high priority in research,” McAdam says.

The Pandemic’s Effect on Family Caregivers

The pandemic may well be making PTSD among caregivers more common.

A recent Centers for Disease Control and Prevention (CDC) report said the rates of symptoms of anxiety disorder and depression, as well as serious consideration of suicide, have been much higher for unpaid family caregivers than the public in general lately.

PTSD symptoms can also emerge for caregivers when a person receiving care has a chronic illness or disability, like Smith’s mother.

COVID-19 has put a stop to in-person social interaction for Smith and her mother. Before the coronavirus spread, Smith’s brother would visit regularly. No more.

“It’s just made my world very, very small,” Smith says.

What Can Trigger PTSD for Caregivers

Whether you’re prone to develop PTSD due to caregiving depends largely on your emotional and physical resilience.

For example, if you suffered from anxiety or depression before caregiving, you’re more likely to develop PTSD symptoms than someone who doesn’t have those conditions. And if you struggled with trauma in the past or are suddenly thrown into a caregiver role without preparation, experts say, caregiving can lead to PTSD symptoms.

Life experiences can adversely affect caregivers, too, including their socioeconomic status, divorce or the death of a child or parent. The more unresolved loss or trauma, the more likely a caregiver will carry extra stress. That’s been true for Smith, who lost her father when she was 12.

“Part of my PTSD also is around abandonment. I think that’s why, with my mom, it [PTSD] definitely gets very triggered when it comes to her health,” Smith says. “She’s also been suffering from cardiovascular disease since I was ten, so even though I became a full-time caregiver at twenty-seven, her health has been something that we’ve been struggling with my whole life.”

Another potential factor for PTSD among caregivers: a lack of family and community support. According to a BMC Psychiatry article, reliable support can make the load more bearable for a caregiver under severe stress.

Advice for Family Caregivers

Navigating a whirlwind of emotions as a family caregiver can be draining. It’s all too easy to put the brakes on your personal life and feelings, but that’s unwise and could be unhealthy.

“Even if you feel like you don’t have time to do anything, be aware of your thoughts and your feelings,” Trivedi says. “Honor those and know that those are real and true.”

Taking regular breaks can help, too. Even a short walk or enjoying some personal time alone can be enough to recharge your batteries.

You may also want to look into getting some help, either from a home health aide or respite care. State and local programs may pay for this kind of assistance. And if the loved one you’re caring for is on Medicare, that federal program might cover this kind of support, too.

Trivedi says these services “often go unused because people don’t realize they can use” them.

A healthy diet, adequate sleep, regular exercise, enjoying nature and engaging in pleasurable activities can be useful, too.

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Juana Poareo is a freelance writer and blogger in New Mexico who specializes in writing about health. She has worked with HuffPost, Saatchi&Saatchi, OncoLink, MBLM and Ambrosia Treatment Center. Her website is JuanaWrites.com.

“7 Ways Family Caregivers Can Combat Compassion Fatigue”

Compassion fatigue is the physical, mental, and emotional exhaustion that can come from caregiving.  It can reduce our effectiveness caring for our loved ones and ourselves.

This is a good article on how family caregivers can combat compassion fatigue:

www.nextavenue.org/7-ways-family-caregivers-can-combat-compassion-fatigue/

7 Ways Family Caregivers Can Combat Compassion Fatigue
Guidelines from an expert who’s also had personal experience
By Stephen Chee
NextAvenue
August 18, 2020

The author says:

The most effective mantra to surmount compassion fatigue? Don’t be your own worst enemy. Instead, be your own best friend. Speak kindly to yourself and give yourself grace. When we befriend ourselves, we can love and serve others more abundantly.

The seven guidelines described include:

  1. Take Care to Give Care.  Many family caregivers have trouble asking for help. … Yet if we fail to care for ourselves first, we will be ineffective in caring for others.  Remember these three principles: We must receive before we can give; we must learn not to put ourselves last and we must be kind to ourselves by taking time to rest, recharge and recover.
  2. Plan Each Day.  In caregiving, it’s a four-step process:  
    * Choose your planning medium.
    * Schedule a one-hour weekly planning session.
    * Block off time for each daily activity beyond caregiving, such as maintaining your work schedule, shopping, exercising, sleeping, having quiet time, nurturing your spiritual practices, keeping doctors’ appointments and spending time with family and friends.
    * Be flexible and realistic, leaving room in your life for unexpected events.
  3. Cultivate Emotional Intelligence.  [This includes] self-awareness, positive outlook, self-control, adaptability and empathy.  Empathy is needed not only in caring for others, but in loving and forgiving ourselves.
  4. Follow the Caregiver’s Bill of Rights
  5. Build Your Support Network
  6. Seek Physical, Mental and Emotional Recovery
  7. Celebrate and Have Fun

Check out the full article for more details.

Robin