“Let Go” (poem)

Someone on one of the online Lewy Body Dementia support groups shared
this poem. The poem’s author is unknown. The poem is included in
Jolene Brackey’s lovely book Creating Moments of Joy. It describes
the healthy choice of letting go for the right reasons. Perhaps this
will resonate with many of you.



Let Go

To let go does not mean to stop caring;
It means I can’t do it for someone else.
To let go is not to cut myself off;
It’s the realization that I can’t control another.
To let go is to admit powerlessness,
Which means the outcome is not in my hands.
To let go is not to try to change or blame another;
It’s to make the most of myself.
To let go is not to “care for,” but to “care about.”
To let go is not to judge,
But to allow another to be a human being.
To let go is not to deny, but to accept.
To let go is not to nag, scold, or argue,
But instead to search out my own shortcomings and correct them.
To let go is not to regret the past,
but to grow and live for the future.
To let go is to fear less and love more.

2 main types of PSP have different FDG-PET scan findings

There is a special type of PET scan — fluorodeoxyglucose PET (FDG-PET) — that tests for glucose metabolism in the brain.  Such scans are only available at large medical research institutions, such as UCSF or Stanford.  There have been FDG-PET studies in the past comparing progressive supranuclear palsy (PSP) and Parkinson’s Disease patients.

This German study takes the research a step further and looks at two different types of PSP.  In this study, 11 patients with the Richardson’s syndrome (RS) form of PSP, 8 patients with the parkinsonism form of PSP (PSP-P), 12 patients with Parkinson’s Disease, and 10 controls underwent an FDG-PET.  They found that different areas in the brain were affected in each of the PSP patient groups — thalamus and frontal lobe for RS and putamen for PSP-P.

For those who may be new to our PSP support group, let me briefly give the primary symptoms of these two most common types of PSP:

* RS, or “classic PSP”:  early onset of postural instability and falls, supranuclear vertical gaze palsy and cognitive dysfunction

* PSP-P:  asymmetric onset, tremor, a moderate initial therapeutic response to levodopa, and frequently confused with Parkinson’s disease

If you’d like to read more about the two most common types of PSP, see this post from 2005:


Using this German study, we can correlate some of these primary symptoms of the two types of PSP with the FDG-PET findings:

* Reduced neurotransmitter activity levels in the thalamus are associated with falls and postural instability, and those with RS have a high frequency of falls.

* Reduced activity in the frontal lobe is associated with cognitive dysfunction, which occurs in those with RS.  (RS patients “have an increased risk for dementia.”)

* And the putamen is associated with parkinsonism symptoms, such as those seen in PSP-P.  Frontal metabolism was normal for PSP-P patients.

The authors state that the “putamen/thalamus ratio may be a useful parameter in clinical differential diagnosis of these PSP subgroups.”  This is potentially helpful for distinguishing PSP-P from PD (Parkinson’s Disease) because these two diseases are hard to differentiate in the early stages.

Limitations of this study are the small sample size and the lack of pathological confirmation of the diagnoses.  I’ve copied the abstract below.



Movement Disorders. 2012 Jan;27(1):151-5.

Fluorodeoxyglucose positron emission tomography in Richardson’s syndrome and progressive supranuclear palsy-parkinsonism.

Srulijes K, Reimold M, Liscic RM, Bauer S, Dietzel E, Liepelt-Scarfone I, Berg D, Maetzler W.
Department of Neurodegeneration, Hertie Institute for Clinical Brain Research, University of Tuebingen, Tuebingen, Germany.

We hypothesized that postural instability and cognitive decline in patients with Richardson’s syndrome could be a consequence of reduced thalamic and frontal metabolism. Severe Parkinsonian signs in patients with progressive supranuclear palsy-parkinsonism may be reflected by alterations in putaminal metabolism.

Eleven patients with Richardson’s syndrome, 8 patients with progressive supranuclear palsy-parkinsonism, 12 with Parkinson’s disease, and 10 controls underwent clinical assessment and fluorodeoxyglucose positron emission tomography (PET).

Richardson’s syndrome patients showed pronounced thalamic hypometabolism, and patients with progressive supranuclear palsy-parkinsonism pronounced putaminal hypometabolism, compared to all other investigated groups. The putamen/thalamus uptake ratio differentiated progressive supranuclear palsy-parkinsonism from Richardson’s syndrome (area under the curve 5 0.86) and from Parkinson’s disease (area under the curve 5 0.80) with acceptable accuracy. Frontal hypometabolism was predominantly found in Richardson’s syndrome patients.

Richardson’s syndrome, progressive supranuclear palsy-parkinsonism and Parkinson’s disease showed different metabolic patterns in fluorodeoxyglucose PET.

PubMed ID#:  #22359740  (see https://www.ncbi.nlm.nih.gov/pubmed/?term=22359740 for this abstract only)

Review of davunetide in the treatment of PSP

This review article was written by researchers at Allon Therapeutics (manufacturers of the experimental medication davunetide, which is currently in clinical trials around the world) and some of the world’s top progressive supranuclear palsy (PSP) experts.

The theory behind davunetide, animal research, and clinical research (in humans with amnestic mild cognitive impairment) were reviewed in a webinar for laypeople held last year (2-8-11).  See my notes on the webinar here:


One of the co-authors of this paper was the Allon Therapeutics presenter of the webinar, Dr. Bruce Morimoto.

There were two new bits of info for me in the review of davunetide animal and human research:

* davunetide has also been tested in alpha-synuclein models, so it may have relevance to Parkinson’s Disease, Multiple System Atrophy, and Dementia with Lewy Bodies

* davunetide has also been tested in an exploratory trial in cognitive impairment in schizophrenia.

The review article’s section on “Challenges and opportunities for clinical trials in PSP” was fascinating.  Some aspects of this section were reviewed by Dr. Adam Boxer from UCSF at a conference in LA last year for PSP families.  He explained why pharmaceutical companies are inclined to conduct research with PSP patients rather than Alzheimer’s patients.  The info provided in the article takes all of what Dr. Boxer said a step further.  The authors explain why the davunetide trial going on now in PSP limited the patients to those with the classic form of PSP, called Richardson’s syndrome.

The authors referred to German research which indicates that although both PSP “patients and relatives frequently seek medical treatment, their willingness to participate in clinical trials has been surprisingly low historically.”  Indeed, I only know of one caregiver group member whose wife participated in the lithium trial, only one caregiver group member whose father participated in the transcranial magnetic simulation study, and very few group members who have participated in the NIH-funded study of genetic and environmental causes of PSP.  Unfortunately, participating in these trials has not been easy.  On the other hand, probably half of our caregiver group members donate their family member’s brain upon death, which is certainly one vital means of enabling PSP research.

By the end of 2012, we should see a paper on the davunetide clinical trial and the Nypta clinical trial.  These are exciting times for the PSP community.

I’ve copied the abstract of the review article below.



Neuropsychiatric Disease & Treatment. 2012;8:85-93. Epub 2012 Feb 9.

Critical appraisal of the role of davunetide in the treatment of progressive supranuclear palsy.

Gold M, Lorenzl S, Stewart AJ, Morimoto BH, Williams DR, Gozes I.
Allon Therapeutics Inc, Vancouver, BC, Canada.

Progressive supranuclear palsy (PSP) is a rare neurodegenerative disease characterized by the accumulation of tau protein aggregates in the basal ganglia, brainstem and cerebral cortex leading to rapid disease progression and death. The neurofibrillary tangles that define the neuropathology of PSP are comprised of aggregated 4R tau and show a well-defined distribution.

Classically, PSP is diagnosed by symptoms that include progressive gait disturbance, early falls, vertical ophthalmoparesis, akinetic-rigid features, prominent bulbar dysfunction and fronto-subcortical dementia.

There are currently no effective therapies for the treatment of this rapidly degenerating and debilitating disease. Davunetide is a novel neuroprotective peptide that is thought to impact neuronal integrity and cell survival through the stabilization of microtubules. Preclinical activity in models of tauopathy has been translated to clinical studies, demonstrating pharmacologic activity that has supported further development. Davunetide’s efficacy and tolerability are being tested in a placebo-controlled study in PSP patients, making it the most advanced drug candidate in this indication.

This review examines the disease characteristics of PSP, the rationale for treating PSP with davunetide and assesses some of the challenges of clinical trials in this patient population.

PubMed ID#:  22347799  (see pubmed.gov for this abstract only)

Case Study of LA Man with PSP

Some of you met Loretta Mazorra at the CurePSP conference in Los Angeles.  She spoke about her husband’s struggle to get a diagnosis of progressive supranuclear palsy (PSP).  I believe her husband was an MD, and it seemed that the medical community did not serve him well.  Loretta is a retired geriatric nurse practitioner.

Loretta, along with a nursing colleague, have published an article on PSP in the Journal of Gerontological Nursing.

Quite a bit of the article is about Mr. A, with PSP, and Mrs. A, his wife.  The couple took advantage of lots of the support resources available — local support group (in LA), PSP Forum, and the monthly telephone support meetings.  I don’t believe Mr. A’s brain was donated upon his death as we are not told that the diagnosis was confirmed upon brain autopsy.  (He didn’t have all of the symptoms of “classic PSP” or the Richardson’s syndrome type as he did not seem to have cognitive impairment.)

The abstract to the article is copied below.


Journal of Gerontological Nursing. 2012 Feb 15:1-4. [Epub ahead of print]

Progressive Supranuclear Palsy.

Mazorra L, Cadogan MP.

Progressive supranuclear palsy (PSP) is the second-most-common parkinsonian neurodegenerative disorder following Parkinson’s disease. Although PSP was first identified clinically more than 40 years ago, it remains poorly recognized and underdiagnosed. Using an individual example, this article describes the epidemiology, neuropathology, clinical course, supportive management strategies, and resources for patients with PSP and their families.

PubMed ID#: 22329395  (see pubmed.gov for this short abstract only)

25 Documents You Need Before You Die

At a recent local atypical parkinsonism caregiver-only support group meeting, we talked about the importance of adult children knowing about their parents’ finances (especially where to find the necessary documents) and final wishes.

At the meeting, I mentioned a helpful article from the Wall Street Journal on this topic; I thought I’d share that resource more widely.

The article, titled “The 25 Documents You Need Before You Die,” instructs us to gather our important documents in one file box and tell family members where the file box is.  This way family members don’t have to go hunting for these documents.  The article notes that getting organized in this way provides huge piece of mind to parents and adult children.

The WSJ article suggests that one adult child work with one parent on this task.  In one example, it took an entire year for a daughter and mother to go through all of the papers and visit all of the banks and brokerages to ensure the daughter was listed on the mother’s accounts.

The article notes the importance of having an original will and original trust documents in the file box.  One expert says:  If your family can’t find the original trust documents, you are “basically setting your estate up for litigation.”

Here’s a link to the WSJ article on the 25 documents:


Weekend Investor
The 25 Documents You Need Before You Die
Wall Street Journal
By Saabira Chaudhuri
July 2, 2011

You may have to subscribe (or pay) to read the full article.

Beneath my name below, I’ve listed some of the documents you need to have.

One final note:  It may be hard for a wife, who has never had responsibility for finances and legal documents, to ask her husband, now diagnosed with a neurodegenerative disorder, about these 25 documents.  That’s why I think adult children can naturally champion this endeavor because, in the end, the adult children will get stuck with the task.



The documents include:

  • Will
  • Living trust
  • A “letter of instruction”
  • Durable financial power-of-attorney form
  • Proof of ownership for housing, land, cemetery plots, vehicles, stock certificates, savings bonds, any partnership agreements
  • List of brokerage and escrow mortgage accounts
  • List of loans you have made to others
  • List of debts you owe
  • Most recent three years of tax returns
  • List of all bank accounts and online log-in information
  • List of any safe-deposit boxes you own
  • Durable health-care power-of-attorney form
  • Living will.  (The durable health-care power-of-attorney form and the living will constitute “advance directives.”)
  • Copies of life-insurance policies with name of carrier, policy number, and agent associated with the policy.
  • List of pensions, annuities, individual retirement accounts and 401(k)s
  • Marriage license
  • Divorce judgment or decree, or stipulation agreement.  Include the distribution sheet listing bank-account numbers