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You are here: Home / Archives for caring for a disabled child

Are We Doomed If Our Telomeres Shrink?

August 16, 2015 by Marylee MacDonald

Photo Source

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.
 
early cell division
 
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?

Australia’s Youngcare Movement Helps the Disabled Young

November 20, 2014 by Marylee MacDonald

Do we in the United States have places that meet the physical and psychological needs of the disabled young? We do, but these places are rare and hard to find. For someone with limited means, the search can seem almost impossible.

Australia's Youngcare Housing keeps those with high care needs out of nursing homes.
Australia’s Youngcare Housing keep those with high care needs out of nursing homes.

That’s why, when I ran across Youngcare http://www.youngcare.com.au/, an Australian movement that is building housing for people 65 and younger, I just about fell out of my chair. The organization was founded in 2005, and these are its goals.

“Currently over 7,000 young Australians (under the age of 65) with full-time care needs are living in aged care simply because there are few alternatives (National Disability Agreement 2011-12). There are also 700,000 more young Australians being cared for at home by family and friends, often with limited support (Australian Institute of Health & Welfare 2011).”

Youngcare has a hotline to help people find housing. They raise awareness of the issue of the disabled young. They lobby government on the state and national level to drive legislative changes. They provide at-home grants that help families remodel their homes, buy equipment, or take a breather. Here’s an example of how one of their services works:

Success stories of Youngcare Connect include Robert’s parents David and Mary. In 2005, Robert suffered major spinal and brain injuries after a motorcycle accident, leaving David and Mary as his full-time carers. David rang Youngcare Connect after many failed attempts at finding a respite service for their son. Within two days Youngcare Connect staff found and organised a respite service, allowing David and Mary their first holiday in five years.

“We can’t thank Youngcare enough, they are the reason we have managed to get Robert into respite, as we have been trying for years and no one would accept him,” said David.

Youngcare Housing
To my mind, one of their most outstanding accomplishments is the creation of beautiful, handicapped-accessible living arrangements, places where a young person and their caregiver can truly live an age-appropriate life.

Beautifully designed, fully accessible apartments allow the disabled young and their caregivers to share comfortable spaces.
Beautifully designed, fully accessible apartments allow disabled young people and their caregivers to share comfortable spaces.

They’ve partnered with the Queensland government and the organization MS Queensland to build a housing project at Albany Creek. Right now there are 370 people in Queensland (an Australian state) living in elderly residential care, and the goal is to get them living on their own, but provided with the help they need.

Caregiving in Life and Art

July 2, 2014 by Marylee MacDonald

Angela Lam Turpin at her book signing, 2013
Angela Lam Turpin at her book signing, 2013

By Angela Lam Turpin

I am a caregiver. Not by choice, but by fate.

Nineteen years ago my son was born with multiple disabilities. My husband and I chose to care for him at home. We have struggled over the years to find adequate health care, education, and respite services for him and our family. Most days we are grateful. Some days we are frustrated. A few days we despair. A couple of days we hope.

My short story, “Hope in the Laundry Room,” from my short story collection, THE HUMAN ACT, published by All Things That Matter Press was inspired by the long-term caregiving of my son.

Tracy, the mysterious girl in the black gabardine suit, brings her clothes to the Laundromat during the week while her disabled son is at school. Since she works, she loads the washers on her break at ten-thirty and returns to place them into the dryers at noon and takes them home with her at two-thirty. Her life is circumscribed by a strict routine which creates an artificial order to the chaos of her life.

Although I am not Tracy and Tracy is not me, I understand Tracy’s dilemma of living her life around the edges of her son and his needs. Days are organized around my son Gabriel’s schedule. Job opportunities are accepted or declined based on whether or not the job will provide the necessary income and work hours to accommodate my son’s needs and school schedule.

Vacations are planned with my son’s limitations taken into account. We have to drive, not fly. We have to stay in a hotel in a single room with someone sharing a bed so that he will not get up and wander around during the night. We have to pack and prepare meals to accommodate his gluten-free diet. We have to find family friendly bathrooms to change his diaper. Nothing is spontaneous. Everything must be planned. Any deviation in the plan can result in a disaster.

But that’s where the similarities between Tracy and I end. While Tracy confronts the possibility of romance and companionship with the narrator who is intrigued by Tracy and her son, I am entrenched in the daily life of marriage with a partner who has shared the same struggles as a caregiver from the very beginning. My husband and I take shifts, caring for a young man who seldom sleeps, constantly eats, and only wants to listen to music.

The challenge to keep a romantic, long-term relationship alive and well is complicated as we enter middle age. Who will care for us when we can no longer care for ourselves? Who will take care of our son once we are gone?

Gabriel, our son
Gabriel, our son

By writing fiction, I can explore those possibilities without fear. I can step into another person’s shoes, similar to mine yet different, and take a chance where before I couldn’t. I can find answers to questions I’ve asked but have been afraid to answer. And, ultimately, I can find the hope and the strength to carry on.
Website: http://www.angelalamturpin.com

Audio Book: http://tinyurl.com/khmepfy

Kindle: http://tinyurl.com/k46fs8y

Paperback: http://tinyurl.com/phawuwx

book cover showing two rocking chairs on a porch in the moonlight





A mid-life mom, Colleen Gallagher would do anything to protect her children from harm. When her daughter’s husband falls ill with ALS, Colleen rolls up her sleeves and moves in, juggling the multiple roles of grandma, cook, and caregiver, only to discover that even her superhuman efforts can’t fix what’s wrong.

“A heartrending story of love, loss and the endurance of the human spirit.” – Literary Fiction Book Review

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