Love-Trust-Humor-Patience (article by PSP spouse caregiver)

Here’s an article written by Ann Ludwig, leader of the Phoenix-area PSP support group and breast cancer survivor.  I believe it will be published in the CurePSP newsletter at some point.  Ann sent me an advance copy; we were in touch last year to make “emergency” arrangements for her husband’s brain donation as it didn’t appear that he would get out of the hospital.  When she contacted me last year, her husband Tom was in the ICU and there was discussion of a ventilator.  In the article, she notes the inadequacy of Tom’s living will.  He was placed on a ventilator, and had a tracheotomy.  Surprisingly, he did get back home.  And, more surprisingly, she recently weaned him from the assisted ventilation.  It’s not clear from Ann’s article what sort of quality of life Tom has at this time.

This may be one of those articles that is good to discuss as a family.  If you are in the ICU with aspiration pneumonia, would you want to be put on a ventilator if the thought was that this was a temporary measure?  What if you’d be on the ventilator for 9 months?

Lots to think about….



by Ann Ludwig
May 2013

LOVE-TRUST-HUMOR-PATIENCE…one can not give or accept care and function fully without all four.  The following is a brief account of my individual journey as I continue to partner  husband Tom Dezelsky along this rocky path strewn by the presence of Progressive Supranuclear Palsy in our lives.

Here I am, 76 years old, and until a dozen years ago ‘caregiver’ was a sad word about some unknown good soul caught turning his or her life over to the integrity of those infamous words…’til death do us part…in sickness and in health…for better or worse….and so on.  My resume reads wife, lover, mother, grandmother, friend…professor, choreographer.  I can now add caregiver.  Odd one out is choreographer yet I would argue  that profession, especially, has helped foster in me the ability to think outside the box.

And how important that ability has been.  There are suggestions, good ones, from many sources, on procedures to follow, but almost always a ‘slight to significant difference’ in the many faces of the disease leaves the nonprofessional, the caregiver, feeling insecure and stressed about the best actions to take .

When was Tom diagnosed?  Seems such a simple question…yet the diagnosis and the disease don’t necessarily  start on the same line;  reminds me of a track meet where  starting points on the oblong circle track all look different yet the finish line looms large and inevitably the same.  In retrospect it seems Tom has been in the grip of this disease for at least eight or nine years.  I found the symptoms which matched Tom’s actions on the internet, printed out and took to Tom’s primary physician, neurologist, and eye doctor.  The physician had not heard of the disease; neurologist said couldn’t be; eye doctor considered the possibility.

Looking back I see images of Tom leaping from rock to rock in pursuit of the trout….its hiding place…the deepest hole…agile, surefooted,  quick to change directions. The initial subtle loss of those capabilities did not go unnoticed by me, but too often unrecognized by him…he was sure this time he could make it….eventually from chair to walker to kitchen window to look out at the unusual desert storm.  Then 911, again.  Balance turned to missteps, falling, need of tools/walkers, wheel chairs, then loss of any of his individual input into getting around; finally almost total loss and in the hands of others.

Tom was on the davunetide clinical trial at Mayo Clinic.  It involved periodic sessions with a battery of tests, both physical and psychological. Within the last few months the trial was aborted “although davunetide was safely tolerated by those participating in the study, the drug displayed no significant effect in relieving the symptoms of PSP or slowing the progression of the disease.” (CurePSP Newsletter, Jan/Feb 2013).  Tom was in the study for eleven months; he was notified in February that he was taking the drug and not the placebo.

June, 2012, Tom entered the hospital with aspiration pneumonia, oatmeal in the lungs, and started the beginning of what will surely be the last stage.  ICU, then a nursing facility, the medical wisdom that he might never go home; a tube for nutrients to prevent more episodes of aspiration pneumonia; a trach to become his mode to insure a living breath.

Procedure for the trach and tube required sedative.  Doctors associated with that procedure, but unfamiliar with PSP, felt that Tom was taking much too long to wake.  Whenever doctors came through Tom silently lay there listening, I know, but not with any response.  On one occasion after a doctor left Tom opened his eyes and shook his hand from side to side with, familiar to me, his ‘what is that all about’ gesture.  I finally came to taking video with my smart phone to show him awake and exercising his feet, gesturing thumbs up or down in response to my conversation.  The medical profession is late to the little information that is known about PSP and often makes assumptions based on a thumbnail sketch.

But what is his wish?  He signed a living will tied to brain function, a traditionally written document of matter over mind…”if I can’t do a, b, or c then let me go…wouldn’t want to live like that” implied in the text.  To me, those phrases are overrated, like ordering a new blouse online.  Looks great until it is put on.

Finally, home for that illusive and ill defined quality of life; the caregiver, the lover, the friend, the family becomes the quality of life that is directly reflected in the patient.  Tom’s past three or four years have served to adjust his responses and some sort of acceptance to a different way of being.  We have both become acclimated to making this new normal a means of existence.  He still hugs…still puckers up to give me a kiss…my measuring stick of his presence.  He allows my bad jokes, my singing over the constant music we play with only that hand wave talked about earlier putting a perspective on it all.

Where am I, the caregiver, in all of this? I had breast cancer from July 2010 thru March 2011.  As caregiver, however, it was necessary to continue ‘caring’ thus surgery, chemo, radiation was business as usual.  Tom went along to all the radiation treatments…(66 of them).  He sat in the car, it was the cool time of the year in AZ, and listened to audio tapes until I returned.  Maybe all that is saying is that thinking outside the self helps maintain a positive approach to the circumstances in which one exists.

Tom is the journey, I am the sub-journey.  From the time my mother moved into the Alzheimer’s section of an assisted living unit in her mid eighties…I made it my ‘pleasure’ to call my dad every day…usually around 4 or 5 to miss the long silences that came as he watched the Diamondbacks play ball.  Now I know how important and what a gift that was to myself and to him.  That is one of  three best things I take credit for.  Add having something to do with bringing three kind and courageous children into the world, and now, being a partner in Tom’s journey.  I don’t want him to go this alone…I am there by choice; it is a quality of life choice for me.

But the big question hangs around the edges.  How will Tom leave us…we have come so far yet gained so little.  He will die in this house…with me and Samantha, his loving and faithful dog…like in the old movies.  I feel satisfied that will be OK with him much as he loves the whole extended family.  We always did make a good team.

With the blessing of the doctor I weaned Tom from the vent assist program (SIMV) to the machine that sounds when its settings are not being recognized yet does not jump in to help.  That made him qualified for hospice philosophy and an assist on the front line, already fortified with some very caring and helpful others.

This is the second to the last missing link to the final chapter.  Then comes the donation of his brain to help further investigation into what and why and when and who.  Finally, closure that all has not been in vain…someone out there is finding an answer.

With both curiosity and a desire for sharing and comparing hope and information about the struggle, Tom and I, in April of 2010, at the suggestion of the CurePSP office, formed a support group in Arizona; sessions are held at the Pyle Adult Center in Tempe the first Saturday of every even month.  Caregivers, patients, family, and medical professionals are urged to attend.  We have had as few as six and as many as 26 people present.  On occasion a speaker knowledgeable about some of our needs comes to answer questions, share information.

Talking with the Support Group I continue to be impressed how each caregiver responds to his or her spouse, friend, or family member.  We all have questions, yet most have a sense of boldness in the face of undetermined solutions.

LOVE, TRUST, HUMOR, PATIENCE are working tools that support the caregiver’s back.  NO doubt about it…I would not choose to write the story this way.  It is a different world; no sense trying to make it the world you once knew.  That will rob you of the possibilities, without a doubt the challenges, that do come with living outside the box.

10 Things Every Family Should Know About Aging with Dignity and Independence

The SCAN Foundation has a great list of ten things every family should know if you are providing care to an older loved one or may be providing care to an older loved one:

1. You are not alone

2. Different people need different kinds of support

3. Support that family members give counts

4. Long-term care is expensive

5. Medicare doesn’t pay

6. Talk to your loved ones

7. Talk with your loved one’s doctor(s)

8. Build a circle of support

9. We all want to age with dignity, choice and independence

10. Your voice is important

Each of these ten points is detailed below.


10 Things Every Family Should Know About Aging with Dignity and Independence
SCAN Foundation
November 6, 2012

1. You are not alone
Today, there are nearly 67 million people in America providing assistance to a spouse, parent, relative, or even a neighbor. As individuals grow older, they are more likely to need assistance that will enable them to live with dignity and independence in their homes and communities. Start preparing today by talking with your family about what aging with dignity means to you, and ask for help if you need it.

2. Different people need different kinds of support
Older people with health conditions and difficulties with daily activities have a variety of needs such as preparing meals, getting in and out of bed, getting dressed or going to the bathroom, and running errands like going to the grocery store or the doctor. All of these routine activities that we often take for granted as part of our everyday lives are vital to allowing individuals to age with dignity and independence.

3. Support that family members give counts
Family caregivers make up the backbone of support to older Americans. There are usually three different ways that families can help an older loved one get the support they need: physical or hands-on care, financial support, emotional support to their loved one, especially as health issues become more complicated. Whether you are providing one of these types of support or all three, a little bit of care from family can go a long way towards helping loved ones stay in their homes and communities as their abilities change.

4. Long-term care is expensive
Paying for daily support services can add up. In 2011, the average cost of having a part-time aide come to your home averaged about $21,840 per year, and the average cost of a semi-private room in a nursing home was $78,110. Such high costs are often unaffordable for the majority of the nation’s middle-class families.

5. Medicare doesn’t pay
Many people mistakenly believe that Medicare will pay for long-term services and supports. The reality is that Medicare only pays for short-term rehabilitative care.

6. Talk to your loved ones
Planning ahead is important. Do not wait for an emergency or other critical incident to start discussing care needs of your loved ones. To ensure that they receive the best care possible that honors their wishes and desires, begin a dialogue about these issues now.

7. Talk with your loved one’s doctor(s)
People’s health needs can change over time. There are a number of important conversations to have with your loved one’s doctor(s) to make sure he or she is getting the right care at the right time and from the right professional.

8. Build a circle of support
Your loved one may have identified a surrogate decision maker in case he or she is unable to make health decisions on their own, so be sure to find out who that person is. There may also be others who are counted upon to help make important decisions, such as attorneys, financial planners, insurance providers, family members and others.

9. We all want to age with dignity, choice and independence
This means being able to live life to the fullest, regardless of our daily abilities or physical limitations. Find out how your loved one defines living with dignity, choice and independence and have that be part of your master plan for securing care and services for him or her.

10. Your voice is important
Decisions are being made at the state and federal level that could impact the services that are available to you and your loved ones. It is important for you to stay informed, get involved, and take action. Talk with your local, state, and federal officials about what kind of support you want as you grow older.


Planning and discussing – 70% of those older than 65 will need long-term care

The PBS Newshour started a series today called “Taking Care.”  It will explore issues related to long-term care in the US.  Tonight’s segment was about an artist with Alzheimer’s who is being cared for by her youngest daughter in Tucson.  (I don’t recommend taking the time to watch tonight’s segment but if you want to, you can find it online at

The most interesting part of tonight’s segment for me was the recent poll done by The Associated Press-NORC Center for Public Affairs Research.  Although 70 percent of Americans older than age 65 will need some form of long-term care, “very few people have arranged to pay for or even to think about their own needs. Most haven’t even taken the basic step of talking to family members about their preferences.”

The segment noted that one way to “arrange to pay for” future care needs is by saving money explicitly for that care.  Reasons given for this failure to prepare or discuss the future include denial, not wanting to think about aging, and a belief that other people will require more care than they will themselves.  Many people mistakenly believe that Medicare will pay for ongoing care at home or ongoing care in a nursing home.

Here’s a link to a side article about this poll:

In a related post on the PBS Newshour health blog, someone stated that she used the story of the youngest daughter caring for her mother with Alzheimer’s Disease as a segue into discussing with her parents what kinds of arrangements they had made for long-term care.

The blog post goes on to link to a list of ten things every family should know if you are providing care to an older loved one or may be providing care to an older loved one.


New “MSA Living with Us” Blog (by TN couple)

Steve Bohannon, who ties his MSA to chemical exposure while serving in the Navy, was diagnosed in 2011 with MSA at Mayo Rochester, after seeing several neurologists.  His symptoms began in 2002.

Steve is now chair-bound.  His wife Kimberly started a blog about a month ago.  The blog is titled “MSA Living with Us.”  Note that some of the posts talk about faith.  I believe the Bohannons live in rural Tennessee.

Here’s a link to the blog:



Aid and Attendance Benefit from the VA

This blog post in the New Old Age section of the New York Times focuses on a veterans’ benefit called Aid and Attendance.  You can read general info on the A&A benefit on the VA website here:

According to this blog post, the A&A benefit “is worth as much as $2,019 monthly for a veteran and spouse, and up to $1,094 for the widow of a veteran.”  But, it can take up to 18 months to receive word from the VA as to whether someone is approved for the benefit!

There are two resources mentioned in this article:

#1, a nonprofit group.

#2  veterans service officers.  The author notes:  “V.A. policy… prohibits veterans from paying a lawyer or other consultant to help with the complicated and confusing paperwork — even if the help comes from other veterans or individuals accredited by the V.A. Consequently, many veterans depend on veterans service officers, the well-intentioned volunteers and employees of nongovernmental organizations trying to help veterans navigate the V.A. bureaucracy.  But insufficient training regarding A&A is common among these officers.”

The blog post mentions some ins-and-outs of applying:

* “Even if A&A has been approved for both members of a couple, for example, the V.A. cancels the entire pension benefit when the veteran dies. To reclaim it, the surviving widow or widower has to start over, filling out forms and sending the same documents the V.A. already has.”

* “If a veteran or spouse dies before receiving the benefit, the family gets a condolence letter saying, ‘Your case is now closed.’ That letter may arrive within days of the death. … If relatives can prove that the application would have been approved, they qualify to be reimbursed for any expenses for care since the time of applying for the benefit.”(The form can be found here: Application for Accrued Amounts Due a Deceased Beneficiary –

Here’s a link to the May 2013 post:

The ‘Long and Unacceptable’ Wait for a Veterans’ Benefit
The New York Times
By Susan Seliger
May 15, 2013, 6:00 am

And here’s a link to the September 2012 post in the NYT about the A&A benefit:

A Little-Known Benefit for Aging Veterans
The New York Times
By Susan Seliger
September 19, 2012 6:42 am

Sounds like a great benefit for those who can persevere through the application process!


Early research of cancer drug (nilotinib)

There was an article in Forbes on Friday 5-10-13 about a cancer drug (nilotinib) successfully degrading alpha-synuclein in transgenic mice.  Usually I don’t circulate emails about results from animal research because translating results to the human world has proved challenging.  But I am circulating this article because the Forbes author indicates that:

“Plans are currently underway for phase II clinical trials, for use in people with Lewy body dementia, Parkinson’s disease, progressive supranuclear palsy (PSP) and multiple system atrophy (MSA).”

That list of diseases for phase II clinical trials is straight from the Georgetown University press release about the research.

That combination of disorders — LBD, PD, PSP, and MSA — is a little surprising.  LBD, PD, and MSA are all alpha-synucleinopathies but PSP is a tauopathy.  On the other hand, the Georgetown researcher is quoted as saying that the cancer drug:

“gets rid of alpha synuclein and tau in a number of movement disorders.”  In another article, the researcher is quoted as saying “this is the first drug that we know reduces alpha-synuclein and [tau] at the same time.”

Below, I’ve copied the link to the Forbes article.  I’ve also copied a link to a Fox News article plus a link to the Georgetown University press release.

In the Fox News article, the Georgetown researchers says that the team is most excited about the potential to use nilotinib to treat Lewy Body Dementia.  He is quoted as saying:  “The level of desperation among these patients is huge.”

The Fox News article says:

“Exploring this drug as a treatment for Lewy body dementia will be the researcher’s main priority going into clinical trials. However, they hope to expand to clinical trials on Parkinson’s and Alzheimer’s patients as well.”

The research article published in “Human Molecular Genetics” is titled:  “Nilotinib reverses loss of dopamine neurons and improves motor behavior via autophagic degradation of a-synuclein in Parkinson’s disease models.”  So the published research is only about the drug getting rid of alpha-synuclein in the brains of transgenic mice with PD.  For those capable of understanding the science (certainly not me!), the PubMed ID number is 23666528.  (See




Link to Forbes article:

A Cancer Drug May Help Treat Alzheimer’s And Other Forms Of Dementia
by Alice G. Walton
Link to Fox News article on this research:
Link to Georgetown University press release on this research:


Anti-constipation recipes (from MSA support group)

Vera James, one of the moderators of the ShyDrager Yahoo!Group, has compiled a list of “constipation recipes” over the years. (Shy-Drager Syndrome is the old name for multiple system atrophy, MSA.) She re-posted it again yesterday. I’ve copied her compilation below.


Anti-constipation fruit paste

1 pound pitted prunes
1 pound raisins
1 cup lemon juice
1 pound figs
1 cup brown sugar
3-1/2 or 4 ounce package Senna Tea (can be found in health food

Steep tea 5 minutes in 3-1/2 cups boiling water. Strain tea to remove
tea leaves.

To 2 cups tea, in a large pot, add fruit and boil for 5 minutes.

Add sugar and lemon juice.


Use food processor or blender to turn mixture into a smooth paste.

Place in plastic container and put in freezer. (the paste will not
freeze and will keep a long time)

Take 1 or 2 tablespoons daily.


Special Recipe

one cup applesauce
one cup oat bran
1/4 cup prune juice
and spices like nutmeg, cinnamon, etc. to taste

May be stored in fridge or pre-measure servings in ice cube tray and
thaw as needed.

Begin by having 2 tablespoons each evening followed by 8 oz. glass of
water—-after 1 week increase this to 3 T, after third week, increase to
4 T…..also, remember to discuss this with your doctor when deciding
to go on this regimen.


YaKima Valley Anti-constipation Fruit paste

1 lb pitted prunes
4 ozs senna tea leaves (at health foods store)
1 lb raisins
1 lb figs
1 cup lemon jucie

1. Prepare tea;use about 2 1/2 cups boiled water, add to tea leaves
and steep for 5 minutes.
2. Strain tea and remove tea leaves.
3. Place 2 cups of tea or amount left in large pot.
4. Add all of the fruit to the tea.
5. Boil fruit and tea for 15 to 20 minutes until soft.
6. Remove from heat and add lemon juice . Allow to cool.
7. Use hand mixer/blender or food processor to turn fruit and tea mix
into a paste.
8. Place in glass jars or tupperware and place in freezer (paste will
not freeze but will keep forever in freezer also ver long in fridge).
dosage 1-2 tablespoons per day. ( does seem to work if used regularly)

You can also add a few tablespoons of ground flax to recipe.

Suggestion for use: can be spread on toast, english muffin, bagel,
bran muffin or rice cake. Good breakfast, lunch or snack — toasted
bagel or english muffin, spread with low fat cream cheese or goat
cheese and topped with fruit paste. For a change of flavor mix in
some raspberry or strawberry jam.


Natural Laxative Fruit Paste for Parkinson Disease

l lb. pitted prunes
1 cup lemon juice
1 cup brown sugar
1 lb. raisins
1 lb. dried figs
1 pkg. of Sienna Tea (3 or 4 oz. pkg) usually found in health
food stores (note: Senna leaf tea does come in tea bags but,
this recipe suggests using the loose leaf tea and it would be the
whole box that is used)

Steep the tea for five minutes in 3 1/2 C. of boiling water.
Strain. Cut the fruit into small pieces. To two cups of tea, add the fruit
and boil it for 5 minutes. Add the sugar and lemon juice. Cool. Put mixture
in food processor. Divide into small portions (1 or 2 T.), wrap in foil
or place in tiny containers and freeze. Take 1 or 2 T. daily.



1 cup applesauce
1/2 prune juice (you may want to try pear juice )
2 t bran

mix & refrigerate. Take 1 Tablespoon daily.


from Doug Peterson

1 cup all bran
4 tsp ground flaxseeds
3 tsp psyllium seed husks


From Elizabeth

Grind Golden Flax Seed in the coffee grinder and take 3 tablespoons in juice or soy milk. Or else I put 3 tablespoons of whole flax seed in apple sauce stir it up & chew the little seeds good.


From Joyce Connor
My husband’s neurologist at the University of Louisville Movement Disorders Center recommended. He started on this regimen and it immediately helped him. The doctor said to eat 1 tablespoon of the following recipe 3 times a day (after meals), and after every meal either take 1 Sennecot or have 1 dosage of Miralax in juice, water, etc.

Here’s the recipe:
1 Cup Oat Bran (uncooked)
1 Cup Prune juice (we’ve also used Plumsmart juice, cranberry juice and cranberry grape)
1 Cup applesauce

The recipe lasts for about 5 days, and it couldn’t get much simpler to prepare! Hope this is of help to others. It sure made a huge difference for Marc.


Prune Bars for Constipation
from Rush Presbyterian Hospital in Chicago

10 Oz of Prunes
10 Oz of Raisins
10 OZ of Figs
½ cup brown sugar
1 cup lemon juice
3 cups sienna tea (use 3 or 4 bags)

After you heat all of this together just put it in the blender. We portion pack it in 3 or 4 Glad Containers and use everyday for my husband. It really helps him keep regular as he has a constant constipation problem. Also, I give him a tablespoon of flax each day.


Prune Whip
by Eileen Jurek

Yield: 10 portions
Serving Size: 4 Tablespoons (2 ounces)

Wheat Bran – ¾ oz
Applesauce – ½ cup
Prune Juice – ½ cup
Cooked/Pitted Prunes – 4 oz
Topping, whipped/non-dairy- ½ cup

Puree cooked/canned prunes until they are smooth, with no lumps of fruit left.
Whip the prepared topping until soft peaks are formed.
Fold the bran, applesauce and prune juice and pureed prunes into the whipped topping.
Check for consistency. Pudding should be soft and fluffy.
Divide pudding into 10 equal portions.

Analysis/Serving: 64 calories; 3 gram fiber; 1.2 gram protein; 181 mg potassium; 0 cholesterol; 6.3 mg sodium; 0.5 gm saturated fat