caregiving Archives

Are We Doomed If Our Telomeres Shrink?

August 16, 2015 by Marylee MacDonald

Why does skin wrinkle and lose elasticity? Because our bodies’ stem cells produce less collagen as we age. Stem cells are also responsible for maintaining the bone mass of our skeletons. As the volume of bone decreases, we become more prone to broken bones. Stem cells are not just present in unborn children. They are present in adults. Learning how to stimulate adult stem cells without triggering rampant cell growth (e.g. cancer) could herald the dawn of an age where people live longer and healthier lives.

“Losing our health is the single biggest concern we all face.” So says Dr. Jill Helms, Professor of Surgery at Stanford University. “Our immune system and biology evolved for us to live till about fifty.” But, she argues, it doesn’t have to be that way. Within the next ten years, she predicts we’ll find people in their eighties and nineties living vigorous, active lives.

And who can argue with that? As many of us unfortunately know, health issues will derail whatever plans we’ve made for work, hobbies, or family fun. It’s not just the time-suck of doctors’ visits or poring over the fine print in the insurance policy. It’s the worry that cocktails of poisonous chemicals and repeated zaps of radiation might not help. But what if your body could heal itself?

Longer and Healthier Lives

What if medicine could mobilize the body’s own healing mechanisms? Breakthroughs at the California Institute for Regenerative Medicine have already figured out how to re-grow bones. This is not science fiction. More breakthroughs are just around the corner. “The key thing to understand,” Helms says, “is that when a cell divides, its DNA must be protected by telomeres on the tips.”

Regenerating Damaged Organs

The good news is that there’s an enzyme called telomerase that both protects and, to some extent, “regrows” telomeres. The research that won microbiologists Blackburn and Greider a Nobel Prize for Medicine found that telomerase can rebuild shortened telomere-caps. If telomeres stay healthy, that will delay aging. Living to a hundred will no longer be the exception.

“A better biology can heal humanity,” Helms says. But telomerase by itself won’t do the job. That’s because telomerase is also closely linked to rampant cell growth, meaning cancer. The key to controlling the benefits and avoiding the problems of telomerase lies in continued funding for stem cell research.

Stem cell research has been controversial because the research uses cells from human embryos. Federal funding has been cut off, due to lobbying by right-to-life groups. In 2003 the California legislature voted to fund the California Institute for Regenerative Medicine. The state funding brought $279,005,859 to Stanford and put them in a worldwide leadership position. It also freed researchers from dependence on federal funding.

Two Kinds of Stem Cells

When embryonic stem cells divide, the two new cells are exact copies of the original. They’re clones. Embryonic stem cells can make any cell that is present in the adult body. Think about that. Any cell in the human body.

But not all stem cells are embryonic. Stem cells change character very quickly. Soon after conception, stem cells begin to differentiate.

At six weeks in utero, a baby is, in effect, already composed of adult stem cells. Brain cells have become a brain. Kidney cells are on their way to becoming kidneys. Blood cells have become blood.

As we age, our stem cells continue to maintain tissues in the hair, gut, and blood. These parts of our body are maintained because stem cells are reproducing them. Although we have adult stem cells, their biology restricts what they can do. That is because stem cells’ potency changes over time. When adult stem cells start to age, there are changes. We have less hair, or our hair turns gray.

The good news is that we still have stem cells, even though they may be damaged. The key thing is to get them to be robust again. Ironically, this is starting to sound a lot like cancer: cells that run rampant and whose growth we don’t know how to stop. And, that is indeed the problem.

Stem cells and cancer cells are very nearly identical. If we can understand what makes stem cells regenerate, then we can regenerate lost tissue. But understanding the growth mechanisms of stem cells may also put us closer to a cure for cancer. Cancer cells are immortal; they keep on growing, no matter what.

WNT and Stem Cells

What would it take to regenerate our damaged organ parts? Could we do it with stem cells? How is it that some animals can regenerate whole organs, and we can’t? What makes regeneration possible?

WNT controls the on-off switch that stimulates stem cells. Here’s what Genetics Home Reference has to say about WNT. “Researchers have identified 19 genes in the WNT gene family. These genes provide instructions for making similar proteins that participate in chemical signaling pathways in the body. Some WNT proteins are specific to certain cells and tissues.”

WNT signaling is frequent in young stem cells but decreases as we age. When WNT is over-active, it causes cancer.

Telomeres + Telomerase + WNT = A Ripe Old Age

Jill Helms says that WNT is the protein that also regulates telemetry (meaning the interaction between the telomeres and telomerase). WNT activates stem cells, and understanding how this mechanism works on the molecular level is the key to understanding tissue regeneration. Because WNT is a recombinant protein (meaning its DNA can replicate itself), WNT can be delivered outside the body.

Are you with me here? I thought not. Let’s back away from the jargon and look at the potential.

The folks at Stanford think that it might be possible to add WNT to specific sites in an older person: a stroke-damaged brain or broken bones, for instance. Let WNT activate the damaged stem cells. Regrow grandma’s hip socket. Helms pointed out that this also has the potential to mend bones that are now held together with screws and titanium plates.

On the surface, this sounded to me like a perfect thing to regenerate motor neurons, but Helms said that MND (motor neuron disease) is in a “nonspecific area.” WNT would only work for a specific area, and that’s because of its powerful stem-cell activation capabilities. (Motor Neuron Disease is the same thing as ALS, or Lou Gehrig’s disease.)

Folks at Stanford have had a great deal of success regenerating bone. They harvest the bone marrow from a damaged site, and they put that in a Petri dish and add WNT. Then they return the marrow to site where they want the bone to regenerate. It makes a lot more bone, and the bone is the right shape for where it’s located. A hip socket, for instance, regenerates into a proper hip socket.

Among the groups working in California is the California Center for Regenerative Medicine, ANKASA—a company formed to bring these discoveries to humans. Right now they are only focusing their research on diseases that have no cure. Drug companies typically need 20 months to do the safety and efficacy tests necessary for FDA approval, but ANKASA is trying to fast-track the results of their research so that it will benefit those who need it now.

If you’re interested in learning more about the details of this research, here’s a link to the University of Utah’s Health Sciences Center. It will give you some insight into the discoveries that continue to unfold. But, don’t rush out and buy the telomerase-enhancing supplements sold on YouTube. Stomach acid will destroy the enzyme before it can be absorbed into your circulatory system and delivered to the telomeres on the tips of your DNA.

So what do you think? Would you like to have your hip socket grow back instead of having a hip replacement? What if this led to a cure for cancer?

Has Caregiving Silenced You?

September 13, 2014 by Marylee MacDonald

When I opened YOU WANT ME TO DO WHAT? Journaling for Caregivers, I felt that I had been invited to join a circle of intimate friends. There’s a voice to this practical and inspirational guide that made me immediately trust that the book would lead me some place special. I contacted the author, B. Lynn Goodwin, and asked if she could tell me more about the book and how it came to be.

MM: The book encourages caregivers to put on their own oxygen mask first. How did that image come to you?
BLG: I’d love to tell you it was original, but the truth is that Sybil Lockhart, who wrote a memoir called Mother in the Middle, suggested it to me. The minute I heard it, I knew she was right. She was a caregiver for her mother, and you might want to check out her book as well.

MM: Caregivers are often advised to take care of themselves. I had people tell me I should get my nails done or go to a day spa. That’s often not possible, given a caregiver’s day-to-day responsibilities. Can you explain how this book could help caregivers who can’t leave the house?
BLG: You can write about fantasies as well as frustrations. Let your writing go where it wants to go, without worrying about structure or form. Let your mind skip around. You’re getting to what you really want to say, and you may not know what that is when you start.

MM: Do you think that something about caregiving turns caregivers into “voiceless” beings?
BLG: It depends on who you are and who you care for. It depends on how badly you want to please the person you’re helping and how open that person is to your ideas. It’s hard for an unmarried daughter to parent her mother. It can also be rewarding. Sometimes it’s simpler to be “voiceless,” but if it’s turning you into a child or an emotional wreck, you need to reclaim your voice. Writing helps, because a journal doesn’t interrupt.

MM: The open-ended prompts lead readers gently into rooms they might not have occupied for quite a while, namely the rooms of their own legitimate needs and feelings. How did you choose these particular prompts?
BLG: I’d used some of them with my free writing group, the one Sybil Lockhart is in. Others came to me as sentences I’d like to finish or sentences I needed to finish. For several years I used sentence starts to help my tenth grade students journal, so I knew they worked in an open-ended way. If a sentence start doesn’t work, look around the room for any sensory image, like the dull drone of a commercial blaring from the TV in the next room. Start there, and see where it takes you. Make leaps. Or comparisons. Or let your mind take you into unknown territory.

MM: One section I particularly like is called “Thoughts About Reclaiming Myself.” This struck me as an extremely wise section. It suggests a future. It suggests that life will get back to normal. Do you think the prompts here are good ones for people who are still caregivers?
BLG: Absolutely. I am living proof that life will get back to normal. I shut down my world to help my mother. When I reopened it, I found new paths. Writing helped me imagine a future and kept me from feeling like I was trapped in an endless loop.

MM: Can you say more about the benefits of writing for fifteen minutes a day, the time frame you suggest in the book?
BLG: Writing for fifteen minutes can clear your mind. It’s like erasing a white board. Once it’s clear, you start again. You let go of what was there (the obsession du jour) and you start fresh. You process. You have enough time to complete a thought but not so much time that you feel the process will never end. If fifteen minutes doesn’t work, try ten or twenty. Write enough to get your thoughts out, but leave yourself wanting more. If you’re eager to share a journal entry, feel free to send it to me at Lgood67334@comcast.net. I’ll tell you what’s already working in the writing. If you ask for help, I may be able to guide you to resources.

MM: Is there a reason for recovering caregivers to use your book after their loved one is gone?
BLG: Once your loved one is gone, you have more time for reflection. It’s a great time to recall both good and bad moments. A relationship doesn’t end when a person dies. I wrote a letter to my mother yesterday while sitting in a restaurant where we used to eat lunch after she had her hair done. I’d just had lunch with my husband, whom I’d met ten years after she was gone. I had a lot to say, and the form opened me up so that I felt like I was talking to her. It was very freeing.

If you are a writer dealing with imaginary people, try letting your characters journal. Use the sentence starts in the book. I can practically guarantee your characters will become more three-dimensional.

MM: What are you working on now?
BLG: I had a YA novel (young adult) called Talent picked up by Eternal Press. It should be out in 2015. I’m working on a memoir about getting married for the first time at age sixty-two. I continue to coach writers, and publish Writer Advice. Check out our latest interviews, reviews, and contests at www.writeradvice.com.

Thanks for this opportunity, Marylee. It’s been a pleasure to answer your questions.
http://www.facebook.com/blynn.goodwin.
http://twitter.com/Lgood67334

Wade Schaming and Caregiving

May 15, 2014 by Marylee MacDonald

Wade Schaming is an artist who works in many mediums: sculpture, photography, and installation. I met Wade at the Vermont Studio Center in February, 2014. Much of Wade’s art centers around his mother, a beautiful woman who lived with frontotemporal dementia that started when Wade was in his teens. Frontotemporal dementia is a neurological disease that is difficult to diagnose, but it changes behavior in ways that profoundly affect a family. Outbursts of anger, hoarding behavior, and eventually the inability to communicate are signposts of the disease’s progression. In visits home, Wade began photographing his mother’s decline.

MM: What were your first attempts at making art in/around your mother’s illness?
WS: After completing my undergraduate degree at the University of Pittsburgh in December 2006, I applied to several MFA programs in and around New York for the next fall. My plan was to use grad school as my ticket out of Pittsburgh and away from the chaos that was my life there. But, that spring I was denied admission to all the programs I applied. Defeated but determined to leave Pittsburgh, I started making outdoor installations in my parents’ backyard knowing that my portfolio of work needed to be stronger and not solely composed of my best projects from undergrad. It was then, the summer and fall of 2007, that these first attempts of making art around my mother happened. She was still undiagnosed and her driving privileges had not been revoked yet so my process was mostly uninterrupted and hidden from her. However, I remember one time using junk mail I took from the house and taping it to the base of a tulip poplar tree. She was home and came outside to see what I was doing. Her speech was already handicapped by then but she made it perfectly clear that she was angry with me for using something she hoarded. She started ripping the piece apart and then I became angry with her. I am sure I yelled at her but it wasn’t about her destroying my work, it was because of my continuing resentment against her. For years she kept our house a mess, and I had to lie for her to my friends as a kid and teenager as to why they couldn’t come over my house to play and visit like I did theirs.

MM: Did bringing your “art self” home reduce the stress of those visits?
WS: After reapplying, I was accepted to the School of Visual Arts’ MFA Fine Arts program in the fall of 2008. I made one installation at home in the summer of 2009 while on break but didn’t resume making work at home until after I was done with my studies in May 2010. I made work that summer and fall and beginning in April 2011, I started scheduling trips home to Pittsburgh every three months. Besides the responsibility I felt to visit my parents, my intention for those trips was to use materials I found in their home to make site-specific installations. Making art and the eventual photographing of my mother gave me purpose to be home but no, it did not reduce the stress. If I didn’t go there to make art I’m not so sure I would have gone as often if at all. I was always uncomfortable being there, it was like what I imagine going to prison as a visitor is like, you’re not the one that is in confinement but your freedom and sense of self is drastically limited. I had to hide my laptop and camera and cell phone from her at all times because if she would find my electronics, she would hide them. She may have lost the ability to do a lot of common things like brushing her teeth and taking a shower, but she never stopped hoarding.

MM: Was there a difference in the way you looked at your mother as an artist compared to how you looked at her as a son? I’m thinking about her various outfits.
WS: Her choice of everyday attire, a nightgown with a sweater or hooded jacket on top, was unusual and definitely added to the composition of the photographs. As an artist she was my muse. I’ve never liked photographing people and I still only like to photograph objects that I have set up. Photographing my mentally ill mother was different though. It felt important, like something I had to do. Every now and then I find myself looking at them and deciding which ones are good and which are bad. When I can say, “this one is good,” I’m an artist sorting out my work. When one is blurry or the composition is inadequate or I get caught up in the sadness and pain of seeing this person who gave me life yet is sick and dying, I’m a son with pictures of my mom.

MM: Did art help you connect with a woman who was no longer able to speak?
WS: I would like to say yes, but that would be a lie. Even though she became something else, she was still my mother, and yet, that mother-son connection was long gone. This contradiction was one of the hardest parts about her being alive and living with dementia. When she died I physically lost her, but I feel that I lost her some 10 years prior. No installation or sculpture or photograph could make up for that void I felt and still feel. I needed a mother in my late teens and early to mid-twenties. I had one, but I didn’t.

MM: When she saw your installations, what do you suppose she thought of them? Was she drawn to them? Puzzled? Intrigued?
WS: She was drawn to the works I made in 2010 and 2011 much differently than in 2007. I remember her pausing and looking. That stillness, which was not usual for her, made me think she might be was responding or understanding something visual. There were times she would try to preëmptively de-install the work for me but it was not as aggressive as in 2007 and when I would stop her she would move on and leave them alone. Her intrigue was what triggered my documentation of her.

MM: You began doing some documentary work around your mother’s illness. Was this to be a record of your mother’s illness or a record of your relationship to it—or both?
WS: It became a record of her illness but that was not my original intention. If you look at all the photographs I took of her in chronological order from 2010 to 2012 you can see her slowly falling apart. You can see the illness changing her. But when I think back to when I was doing it, I don’t think I knew what I was doing. There was even one trip, October 2011, where I didn’t take any photos of her. I’m not sure why I don’t have photographs from that trip, but it clearly shows that I didn’t have a plan. If I had a plan, I would have October 2011 photos. So I guess it was partly my relationship to the illness. I knew she was dying, even though I couldn’t accept that reality and denied it in a way. That childhood belief that your parents will live forever stayed with me until the moment I got that terrible phone call. Even then I was in denial.

MM: After your mom’s death, your art took a much different direction. Talk a little about the immediate aftermath of her death, specifically the couch installation.
WS: The last few months of her life she lost control of her bowels and urinated in her bed and on the couch in the living room. Before I came home from New York for the funeral, my dad threw away the bed but the couch was sitting in the garage for the following week’s garbage day. He let me delay its disposal and after the funeral I used it for an installation, adding sheet rock to where she sat. The weight of the rocks broke the couch and I left the piece in the yard for a couple of days. I guess you could say it was a metaphor for what had happened. The couch represented her life, worn and soiled. The placement of the rocks symbolized the impact of the illness, messy and irreversible. The breaking of the couch finalized the story.

After her death I started taking her things to my studio in New York, specifically Avon products and Tupperware that she hoarded from her days as a saleswoman. This “new” material formed the substance of my sculptures for the next year or so; up until you and I met at Vermont Studio Center in February 2014. However, the sculptures I made in Vermont came from materials I found throughout the town of Johnson, Vermont. This process returned me to my days at School of Visual Arts when I made work from things entirely found on the street. Before the Vermont Studio Center I thought my work needed to have my mother’s possessions in them to justify their creation. Now I can see that’s not so. That residency in Vermont definitely served its purpose by allowing me to free myself of my own rules.

MM: When did you see the possibilities of using objects your mom had collected? How much stuff was there down in the basement and out in the storage shed?
WS: There is still stuff in the basement and storage shed! My father has had a hard time moving on. It’s very frustrating for me to see him stuck, but I can’t imagine what it is like to lose the love of your life, especially the way he did. However, he has been very helpful with transporting her things from Pittsburgh to my studio in New York. I think the possibility of using these specific objects has always been on my mind but the timing was never right. Now that she’s gone, it’s now or never.

MM: Do you view your sculptures as ephemeral or permanent?
WS: I would suggest somewhere in between. My installations are definitely ephemeral–they don’t exist after I photograph them. My sculptures are tricky; the best they ever look are right after I am done building them in my studio. When I take them apart and reassemble them in a museum or gallery or exhibition space they are not quite the same, to my eye at least. Bonding the materials together with some kind of adhesive and making them more permanent would violate my process and just not feel right. They exist because of their internal struggle with balance. They are sculptures made up of objects with past lives that no longer function. To not allow them to defy gravity on their own would take away from what they are–assembled objects with a new purpose.

MM: Did you ever try to make art with your mom or dad during this long care-giving period?
WS: When I was home for Christmas in 2008 I tried drawing with her as I did when I was a child. We had always drawn Christmas trees together when I was young and at any time of the year. I remember her leading the way as my childish marks followed. In 2008, it was reversed. She would only mimic what I drew on the paper. So, I would draw one side of a tree and she would complete the other, before hiding the pen somewhere. That’s the last time I can remember drawing with her.

MM: Do you think making art could help people who are caregivers? Do you have to know how to draw to make art?
WS: Of course art making would help caregivers, the problem is there is no down time to do so. Caregivers are giving care 24/7, what they need is someone to care for them. If my dad had more help when my mom was sick, I think it would have relieved a lot of his stress. Ideally, I think if people who have first-hand experience caring for people with dementia could organize and help others in the same situation, current caregivers wouldn’t feel so isolated and alone. Anyone can make art, most people just choose not to. Drawing a portrait or landscape or some kind of representative thing from this world isn’t the only way to make art. I think people who go through these kinds of traumatic experiences have the most to offer us in some form of expression, especially through the visual language.

MM: Have you reached a point where you think, “I’m pretty much done with that,” or can you imagine a day when you might want to revisit the issue of your mother’s illness, its long duration, and the impact it had on your family?
WS: I don’t think I can ever escape her or the impact of her illness, even if I wanted to.

For more, see Wade Schaming’s website.
http://wadeschaming.com/home.html
http://wadeschaming.com/home.html

When Wade Schaming went home, he made art to document, and try to deal with, his mother's frontotemporal dementia. — When Wade Schaming went home, he made art to document, and try to deal with, his mother’s frontotemporal dementia.

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