Category Archives: PSP

“Last Dance at the Savoy” – memoir by a caregiver

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“Last Dance at the Savoy” – memoir by a caregiver

Recently I asked if Brain Support Network super-volunteer Denise Dagan could read the memoir Last Dance at the Savoy, by actress Kathryn Leigh Scott (kathrynleighscott.com).  I was honored to meet Kathryn last year at a progressive supranuclear palsy (PSP) conference in the local area.  Her husband had PSP.

Below, Denise shares her review of the book and some highlights.  The symptoms and behaviors mentioned below are found in most of the disorders in Brain Support Network.

Robin

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Denise’s review of
“Last Dance at the Savoy”
by Kathryn Leigh Scott

Robin asked me to review this memoir.  The diagnosis is PSP, but it is about caring for the love of your life until the very end.

Kathryn says she wrote this book because, when her husband was diagnosed with PSP she, “…yearned for someone to take my hand and figuratively walk me through the difficult times I knew were ahead.”  She’s done that for you in spades by beautifully sharing her own story!  She’s also included a good resource guide.

Kathryn is a good writer.  She spends the first several chapters introducing herself and her 2nd husband, Geoff.  She doesn’t just run through the history of how they met and their respective professions, but invites you to witness romantic moments, annual jazz pilgrimages, favorite haunts and travel destinations.  You are right there with them through everything.  Every experience is conveyed with thoughtfulness, honesty, and humor.

By the time she gets into the nuts and bolts of caring for Geoff you understand their devotion to friends, loved ones, and each other.  You understand her motivation to join in his denial, protect him from the injury of falls, and support his remaining life.  You understand their great desire to push through the difficult bits and continue enjoying all that their respective, amazing, lives have to offer.

Since it is a memoir, and not a caregiving guide, there’s little in the way of tips and tricks for helping someone with PSP (his diagnosis, after many exams), although as she describes how she manages, you pick up on what works and what doesn’t.

Most useful to caregivers of any long-term illness is her frank recollection of her thoughts and feelings, how she dealt with the stress of caregiving, complicated by trying to be available for her husband, her family, and her career.  She is not shy about sharing her mistakes and correcting them, nor her guilt over injuries he suffered because of those mistakes.  At the same time she reprimands herself for not always carrying a book in her bag for those long hours in the ER after his falls.

It took some struggle on both their parts for Geoff to accept each new dependence on Kathryn, even though he had cared for his first wife, Barbara, through 12 years of Multiple Sclerosis until her death.  It’s not the same when you’re the one being cared for and he had no control over emotional outbursts because of the disease process.  And they didn’t know PSP itself was a factor in those outbursts for a few years.

When Kathryn was frustrated with her mother’s behavior in the last weeks of cancer, Geoff recognized her mother’s behavior as separating from the family and the world in preparation for death.  He had seen the same in Barbara and shared that with Kathryn to ease the strain between her and her mother.  She remembered this when he was in hospice and his advice about her mother, “This is her journey.  Just be there for her.”  As difficult as it was, she was there for her mother, and for Geoff.

Kathryn takes us with her through the funeral arrangements and some months after.  She shares with us not only her grief, but the support of friends and family, and a bit of how she moved on.  In a quiet moment she realized that she was not only going to need to learn to live without Geoff, she would need to redefine her life.  She would find his presence in unexpected places, and make peace with that.

– Denise

 

Anosognosia (lack of awareness) in dementia

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Someone on a frontotemporal dementia online support group recently suggested this “Senior Living Blog” post on anosognosia, which is a lack of awareness of impairment.  Though this post is focused on Alzheimer’s Disease, I believe it can affect those with non-AD dementias as well, such as LBD, PSP, and CBD.

Obviously if the family member has anosognosia, this is a difficult situation for the caregiver who wants to provide care and work with physicians to provide treatment.  Of course many of us think that our family member must be in a state of denial, when it’s really anosognosia.  Sarah Stevenson, the author of the “Senior Living Blog” post, addresses all of these issues.

Ms. Stevenson wisely draws on an AlzOnline article about anosognosia; it’s one of the best articles I’ve read.  See this email from 2009:

www.brainsupportnetwork.org/dealing-with-anosognosia-unawareness-of-decline-or-difficulties/

Ms. Stevenson also offers this suggestion:  Try reading “I Am Not Sick. I Don’t Need Help!” by psychologist Xavier Amador, a professor at Columbia University.  This book “provides practical recommendations for those who lack insight into their mental illnesses.”

Here’s a link to the post:

www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/

Senior Living Blog
Anosognosia and Alzheimer’s
A Place for Mom
By: Sarah Stevenson
Posted On 22 Mar 2016

Good luck!

Robin

 

NORD study welcomes those with rare diseases to participate

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Oregon State University is teaming up with the National Organization for Rare Disorders (NORD, rarediseases.org) in conducting a large-scale study about the “information and psychosocial support needs of people living with rare disorders.”  Only those with a rare disorder or undiagnosed rare condition may participate in this 40-minute online survey.  Caregivers are not eligible to participate at this time.

Within Brain Support Network, these three diagnoses are considered rare:

  • PSP (progressive supranuclear palsy)
  • MSA (multiple system atrophy)
  • CBD (corticobasal degeneration)

Of course, LBD (Lewy body dementia) is NOT a rare disorder.

If you are interested in participating, check out:

oregonstate.qualtrics.com/jfe/form/SV_7VEgG8kwTizenAN?platform=hootsuite

At the bottom of that webpage, click on the NEXT button to view the consent form and proceed to the study.

Robin

“Things I have learnt” (message to caregivers)

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“Things I have learnt” (message to caregivers)

Though this information was found on a PSP-focused online support group, I don’t think the content is PSP-specific.  I think all of the caregivers within Brain Support Network will find some value here.

The PSP Association — the UK-based advocacy organization in Europe for PSP (progressive supranuclear palsy) — hosts its online support forum with the website HealthUnlocked (healthunlocked.com).  A couple of days ago, a woman whose husband recently died with PSP, posted about “the things I have learnt.”

With the author’s permission, I’ve copied excerpts from her post below.  She asked that I remove her name and husband’s name from this post.  And she requests that no one contact her.

Her messages are for all caregivers.

Robin

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Excerpts from post
The Things I Have Learnt
HealthUnlocked’s PSP Community
January 11, 2017

The things I have learnt? I suppose my main message is look after yourself. Those last few days, I did not take part in one bit of [my husband’s] personal care. I spent it, being his wife, loving him, snuggling up beside him in bed, telling him I loved him. It made it very special. In hindsight, that wonderful thing, I should have got others to take more of this responsibility off my shoulders, a long time ago. Spent more time, sitting and talking with him, not rushing around, in a mad whirl, trying to keep everything perfect, getting so, so tired, therefore, cross and being in total state of exhaustion, all the time. We all think, “nobody can look after their loved ones as well as me.” That I have to say, is rubbish!!! 99% of Steve’s carers, loved him and when I let them,(!!!!) could do everything, just as well as me, with the added bonus of a smile of their faces! The uniform of a Carer, takes away the embarrassment, that we all think, our loved ones suffer. This is my only regret, I tried to struggle, far too long, on my own.

The weeks [my husband] had in respite, helped in giving me a break, which meant I was able to carry on, that extra bit longer. Of course I felt guilty at the beginning, but now, oh, it was such a benefit to us both. Still, I am receiving the added bonus’s of it. I am use to being in the house on my own. I can go out with others, for a drink or a meal. I am able to walk into a supermarket and buy food just for me, without crying. I’m sure there will be moments, but not yet.

The hardest part of PSP? NOT now! I think it was more the middle bit, when his bladder stopped working, the constant clearing up of Urine. Falling. The long, slow loss of communication and the realisation, that PSP would win in the end. At the moment, it’s still a huge relief that [my husband] is no longer suffering from this evil disease.

You all know, I shouted, screamed, kicked and hated PSP with a vengeance. [My husband] did get this full frontal. But I won’t let myself feel guilty about this, I was just as much a victim of this illness as [my husband]. My only hope is, he understood.

I do feel very proud of myself, I looked after and cared for [my husband] until the end. Something every single one of you reading, has done, is doing and will do! Never, EVER doubt yourself, yes, you are tired, yes you are exhausted. The feeling of failure, is huge. We all feel that way, because, in the end, PSP does win. Its not because we are useless!

Copyright 2017, HealthUnlocked

Notes from “Pain in Parkinson’s Disease” webinar

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Though this webinar was focused on Parkinson’s Disease, nearly all of the information shared applies to those within Brain Support Network.

Last Tuesday, the Parkinson’s Disease Foundation (pdf.org) hosted a webinar on “Pain in Parkinson’s Disease.”  The speaker was Dr. Jori Fleisher, a movement disorder specialist with NYU Langone.

The slides from the talk are here:

www.pdf.org/pdf/slides_pdexpertbriefing_paininPD_010617.pdf

You can view the recording — which includes the 45-minute formal presentation plus a great 20-minute Q&A — here:

event.netbriefings.com/event/pdeb/Archives/pain2/register.html

You’ll have to register first.  Registration is free.

Brain Support Network super-volunteer Denise Dagan listened to the webinar and wrote up some highlights.  Of course you can find lots more details by viewing the slides or, better yet, by listening to the recording.  See Denise’s notes below.

Robin

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Notes from Denise Dagan

Pain in PD
Parkinson’s Disease Foundation Webinar
January 10, 2017

Dr. Jori Fleisher spoke for 45 minutes + 20 minutes of Q&A on these points:

Pain is common, under-recognized, under-reported, detrimental and manageable as a non-motor symptom of Parkinson’s disease.  By detrimental, she meant pain can keep you from exercising, thereby worsening stiffness, contractures, and balance, potentially falling and resultant injury.

Early, asymmetric stiff or painful shoulder (hip or knee) is a common, often misdiagnosed presenting symptom of Parkinson’s disease.  Talk with your neurologist or movement disorder specialist before you get surgery.

There are four categories of pain.  More than one may be present in Parkinson’s disease.

1. Musculoskeletal pain is most prevalent (45-75% of patients) and involves muscle cramps, tightness (especially in the neck), paraspinal (on either side of the spine), or joint pain (distinct from arthritis in unilaterality & lack of inflammatory changes).

2. Dystonic pain (8-50% of patients) is caused by both sides of a limb’s muscles spasming simultaneously.  It can occur early in Parkinson’s disease, even as a presenting symptom, or as a complication of treatment, either as an early morning off-dystonia or at the peak of medication effectiveness, especially in the neck and face.

3. Radicular or Neuropathic pain (5-20% of patients)

* Radicular pain is caused by a pinched nerve due to a herniated disk in the spine which may be due to postural abnormalities or dystonia.  Physical therapy should be tried to remedy those postural changes brought about because of Parkinson’s disease.

* Peripheral Neuropathy refers to the bottoms of feet or fingertips and occurs more often than expected in Parkinson’s disease.  It is potentially related to dopaminergic therapy.

4. Central pain (10-12% of patients) is hard to describe, vague, constant, not localized to a specific nerve distribution.  It may have autonomic or visceral character in some Parkinson’s patients and present as reflux, labored breathing, or feeling flushed in the oral or general areas.

In communicating your experience of pain to your neurologist, consider using the OLD CARTS reference to be thorough.  Doctors can’t help at all if they don’t have specific information.  OLD CARTS stands for:

* Onset  (when did it start?)

* Location  (where does it hurt?)

* Duration  (how long does it last?)

* Character  (how does it feel?  Sharp, tired muscle, nauseating, etc.)

* Aggravating and alleviating factors  (exercising, resting, pain killers, next PD med dose, postural changes?)

* Radiation  (does it travel along the nerves from the point of origin?)

* Timing  (especially in relation to when you take your meds., mornings, after exercise or prolonged sitting)

* Severity  (completely pain free or child birth on a scale of 1-10)

Pain management in Parkinson’s disease requires attention to timing, quality of the pain, and relation to medication doses.  So, keep a diary of when you actually swallowed your medication and answer all the OLD CART questions in your diary with respect to your pain.  This should give your doctor enough information to determine how to help.

Multidisciplinary, customized approach to each patient’s pain should include:

– Physical therapy and exercise to improve mobility, prevent contractors, maintain range of motion.

– Pharmacotherapy tailored to the particular pain type(s).  May require adjusting Parkinson’s medications and/or adding anti-inflammatories, anti-depressants, anti-epileptics, or opiates, depending on the type and cause of pain.

– There are no proven benefit for medical marijuana or other alternative treatments (yet).  In fact, the effects of using marijuana include low blood pressure, dizziness, hallucinations, sleepiness, and confusion, which are similar to Parkinson’s symptoms and Parkinson’s medication side effects, so marijuana is not a recommended alternative therapy for any symptoms of Parkinson’s disease, including pain.