Monthly Archives for May 2013

Alzheimer’s Takes a Toll on Middle-Aged Adults, Too

Published in Pawtucket Times, May 10, 2013

While many view Alzheimer’s Dementia as a devastating disease afflicting persons well into their later retirement years, Jacob Vinton (“Jake”) knows better than that. The 57-year-old is one of an estimated 200,000 persons (out of five million Americans) who today have been diagnosed with early onset Alzheimer’s.

Discovering the Truth

Jake’s physical deterioration derailed any plans to reenter the workforce, forcing him into early retirement. Because of his age, he will not be eligible for the full range of federal retirement and pension benefits that he could be eligible to receive if he waited to retire at age 65.

In his mid-50s, the middle-aged man experienced early signs of cognitive impairment that included memory loss, specifically not remembering conversations or previous events, or the names of people and things. As the disease progressed, Jake gave up his car keys.

In 2006, Jake, chose to became a stay-at-home father, taking care of his two teenage sons, while his wife, Karen, a clinical psychologist, became the family breadwinner, working as a public health researcher for a national nonprofit consulting firm.

Before making this decision, Jake, an electrical engineer who graduated from Trinity College in Hartford, Connecticut, had decided not to reenter the job market, or even to apply for graduate school. Looking back his wife believes that his declining “planning and organizational” skills played a key role in his decision.

Karen, 54, never attributed her husband’s occasional loss of words to be due to a very serious, devastating cognitive condition. Warning signs became obvious to her when Jake could not remember a conversation that had taken place 15 minutes earlier.

For Jake, a daily walk with the family’s rescue golden doodle, down a very familiar walking path, gave him a startling “wake up call,” that something was definitely wrong. He broke down, crying when he realized that he was lost and did not recognize his surrounding neighborhood. The emotionally distraught man would ultimately get home through the assistance of others in the neighborhood.

Being a professional researcher, Karen tiressley sought out answers to explain her husband’s cognitive decline through professional contacts in the medical field. After a year medical appointments that included multiple diagnostic tests (there is no one definitive test) by a neuropsychologist and a neurologist who specialized in Alzheimer’s disease, his wife’s worst fears were positively confirmed – Jake definitely had early onset Alzheimer’s Dementia.

Karen was not shocked by the medical findings. Alzheimer’s Dementia has limited pharmacological treatments that slow but do not stop the disease’s progression. Although Jake was not happy with his medical diagnosis, he strangely felt relieved now knowing the cause of his memory slips and why he was so “loopy,” as he put it.

Following the 2011 medical diagnosis, the Foxboro couple made a joint decision to relocate to the City of Providence. “Providence offered more medical and support services and also allowed him to walk to his volunteer activities and classes,” Karen said.

Loving Friends at Hamilton House

Jake also began taking Aricept and Namenda, prescription medications used to treat mild, moderate, even severe Alzheimer’s disease. Over time with adjustments to the dose, “it has made a big different in my thinking,” Jake remarked.

But, every morning has become time-consuming when Jake needs to be oriented to the days activities, reports his wife. “He can be told that he has an art class at Hamilton House but he’ll forget it,” she says, adding that even if you write that down he might just loose that piece of paper.

Even before his symptoms of Alzheimer’s intensified, Jake did a little carpentry and painting at Hamilton House, a center for active adults age 55 and over on Providence’s East Side, located very close to his home. Today, still does his maintenance chores, but attends art classes and other activities at the French Chateau-style home.

“I am just the kid here,” jokes Jake, noting that “everyone keeps an eye on me” during his three daily visits each week.

Director Jessica Haley, of Hamilton House, says that Jake is the only person with early onset Alzheimer’s among its 300 members. “He’s comfortable here because we’re not a senior center but an adult learning exchange,” she says.

“People love his sense of humor, and he just hugs everybody, says Haley.

When not at Hamilton House, Jake also spends time at the Eastside Mount Hope YMCA. “It’s like playtime,” he says, a place where he can lift weights and exercise. He also regularly attends Live & Learn, a weekly social engagement program held at this YMCA, run by the Alzheimer’s Association, Rhode Island Chapter. This program is offered in five different locations through out (at the Woonsocket Harris Library).

But as the disease progresses, forgetting little details and names continues to frustrate Jake. As to coping, “He rolls with the punches and goes with the flow,” says his supportive wife, noting that “he really is an easygoing person.” However, Jake believes that his daily walking helps him to think more clearly. “I try to do the best I can, not wanting to be a burden on my wife and family,” he say.

So far he seems not to be a burden to anyone.

Finding Needed Support and Resources

Karen keeps tabs on her spouse, making sure he does not get lost when he walks their dog. “This has not happened in a long time,” he says. She also has taken over the household finances and has power of attorney over his legal issues. All of these changes took an enormous amount of time and effort.

She has turned to a very large network of friends who could help. “You should be not shy in asking for assistance when you need it,” she adds.

According to Annie Murphy, Outreach Coordinator for the Live & Learn Program, at the Alzheimer’s Association-RI Chapter, out of 24,000 people in the Ocean State with Alzheimer’s disease, there is about 900 diagnosed under the age 65.

Early intervention is extremely important for those afflicted with early onset Alzheimer’s, says Annie, noting that a formal diagnosis can allow for earlier treatment.
“We know that medications approved to manage the symptoms of Alzheimer’s are more effective if they are given in the earlier stages of the disease,” she says.

Once diagnosed, a person has an opportunity to participate in their future care planning, states Annie. “This gives them an opportunity to be able to learn what they are living with and to be able to personally manage this disease along with their care partners,” she adds.

A “healthy, active, lifestyle combined with proper nutrition and appropriate medication treatment” is important for those living with this disease, notes Annie. “It won’t slow down the progression, but improves the quality of life.”

The Alzheimers Association, Rhode Island Chapter, offers a new education series, “Living with Alzheimer’s,” geared to persons who are in their early stages of this disease and their care partners. The nonprofit’s website ( http://www.alz.org/ri/ ) also provides information about the debilitating Alzheimer’s and other related dementias, available resources, services and support groups, that are offered free to person with Alzheimer’s and their families.

In addition, she notes the offering of a new support group for people in the early stages of Alzheimer’s at her office in Providence.

Annie also notes that information related to the nonprofit’s annual caregiver’s conference at the Crown Plaza, in Warwick, on June 25, 2013, is also posted on the nonprofit group’s website. There is no registration fee and one of the workshops specifically addresses younger onset Alzheimer’s issues.

Herb Weiss, LRI ’12, is a Pawtucket-based writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.

E-cigarette Legislation to Get Make Over

Published in Pawtucket Times, May 3, 2013

Just weeks ago, health advocacy organizations found themselves in an awkward, uncomfortable situation at the Rhode Island General Assembly. Although they supported the stated intent of House and Senate bills (H 5876 and S 622) that blocked the sale of electronic cigarettes (or e-cigarettes) to minors, they were forced to oppose these legislative proposals because of troubling provisions they believe were embedded within these bills.

When introducing his Senate proposal, e-cigarettes, says Senate Majority Leader Dominick J. Ruggerio, are proof that not all technological advances are good things. This led the Senator, representing Providence and North Providence, to become the Senate’s lead sponsor. House Finance Committee Chair Helio Melo, whose legislative district covers East Providence, jumped in as prime sponsor in his chamber, because of his desire to get the debate started on this relatively new public health issue.

E-cigarettes contain nicotine, a highly addictive substance. According to the U.S. Federal Drug Administration, the safety and efficacy of e-cigarettes have not been fully studied, consumers of e-cigarette products currently have no way of knowing whether e-cigarettes are safe for their intended use, how much nicotine or other potentially harmful chemicals are being inhaled during use, or if there are any benefits associated with using these products.

Additionally, it is not known if e-cigarettes may lead young people to try other tobacco products, including conventional cigarettes, which are known to cause disease and lead to premature death.

The FDA warns that more research needs to be done on the health risks of inhaling liquid nicotine, and has announced its intent to assert regulatory authority over electronic cigarettes.

New Technology in Smoking

Although the first patent on e-cigarettes was filed in 1963, the smoking device became readily available in the United States by 2007. E-cigarettes are electronic nicotine delivery systems. Often shaped like cigarettes or cigars, they deliver nicotine to a user in the form of vapor. E-cigarettes ordinarily consist of battery-operated heating elements and replaceable cartridges that contain nicotine or other substances, and an atomizer that, when heated, converts the contents of the cartridge into a vapor that a user inhales. The nicotine in these products is derived from tobacco, but unlike cigarettes and cigars, there is no tobacco in e-cigarettes, and hence no smoke.

Ruggerio noted that his legislative proposal would prohibit the sale of e-cigarettes to minors, along with expanding the statutory definition of “tobacco products” to include “tobacco-derived products” and “vapor products.” “Vapor products,” as included in these bills, would refer to any non-combustible tobacco-derived product containing nicotine, such as an electronic cigarette, that employs a mechanical heating element, battery or electronic circuit, regardless of shape or size that can be used to heat a liquid nicotine solution contained in a vapor cartridge. The term would not include any product regulated by the U.S. Food and Drug Administration under the Food, Drug and Cosmetic Act.

“Those who say these products are designed for adults who want to quit smoking real tobacco products are ignoring the fact they are marketed to be appealing to youngsters, offered in flavors such as bubblegum and chocolate,” observed Ruggerio. “Kids may see these as fun things, but as adults, we should know better and take action to keep our children safe.”

Health Advocates Rally to Oppose E-cigarette Proposal

At a first read, Director Karina Holyoak Wood, of the Rhode Island Tobacco Control Network (RITCN), saw the e-cigarette legislation proposal as positive step toward keeping the new smoking technology out of the hands of minors. However, once Wood, whose anti-smoking network includes 55 groups (including the American Lung Association, American Cancer Society, American Heart Association and the Campaign for Tobacco Free Kids), looked over the bills she found it embedded with provisions that could potentially undermine future regulation of e-cigarettes and create regulatory loopholes.

Wood and colleagues discovered that the e-cigarette bill was being promoted by RJ Reynolds, a major tobacco company. She believed that while the legislative sponsors’ intent was to prohibit youth access to e-cigarettes, a laudable goal, she feared that RJ Reynolds might be utilizing the bill as “a Trojan horse to establish their own business agenda for this emerging and currently unregulated smoking device.”

Suspicions were confirmed, says Wood, when a lobbyist from R.J. Reynolds Tobacco company came to the Ocean State to support Ruggerio’s and Melo’s e-cigarette bills at the Senate and House Finance Committee hearings on April 9 and April 23, respectively. She also became aware that similar legislative proposals were popping up all over the country, with the Winston-Salem, North Carolina tobacco company lobbying for their passage.

Wood, and 17 health advocacy organizations gave the bills the thumbs down at both panel hearings, while the tobacco industry endorsed the measure wholeheartedly.

In her written statement, Dr. Patricia Nolan, former director for the RI Health Department, who now co-chairs the RITCN’s Policy Committee, warned the Senate Finance Committee members that the bill would define “a ‘new’ tobacco product and exempt it from some of the controls that currently apply to all tobacco products. She charged that it would define these products in ways that actually might undermine Rhode Island’s ability to effectively regulate and control them.

According to Nolan, the bill’s definition of tobacco products may not include all e-cigarette and vapor products, leading to confusion. The new products regulated by laws concerning indoor air pollution and worker safety, she charged. “The safety of e-cigarettes and vapor devices for users or for indoor air quality is not known,” she said.

With the State scrambling for tax revenue, S 622 and H 5876 are silent on the issue of taxation of the e-cigarette product. “Having the definition in the tax section of the law could facilitate either taxing or exempting these ‘new’ products,” she told the House panel.

Nolan also noted that the bills create obstacles to enforcing penalties against merchants which violate the Youth Access Law by eliminating the requirement for courts to maintain records of penalties and fines imposed for violations not requiring that the Division of Taxation be notified about the disposition of the violation.

Other opponents and critics included the RI Department of Health’s Tobacco Control Program, the City of Providence and East Providence Prevention Coalition, and several local retailers, including Barrington-based, Ecig Shed came and Cigotine, LLC, in Providence, who came to share their concerns, both owners threatening to leave the Ocean State if the measure was enacted. Melo’s e-cigarette bill would greatly reduce their sales by restricting online sales of nicotine-containing products by treating the smoking device the same as traditional tobacco products, noted the business owners..

Specifically, e-cigarette bills would require a retailer conducting an online sale to obtain a copy of the buyer’s driver’s license along with a statement from the buyer affirming that they are the person pictured. The purchased product must be sent through a service that checks the ID of the buyer at delivery. Retailers would be required to perform this check every time a consumer places an order.

Finally, e-cigarette retailers in Rhode Island would be required to obtain a tobacco license and only buy their e-cigarettes from licensed wholesalers or distributors.

At the hearing, Lobbyist Jack Hogan, of R.J. Reynolds’s Tobacco Company, noted that his company’s support of the General Assembly’s cigarette legislation, and proposals being considered by other state legislatures, was to keep tobacco, including e-cigarette products out of the hands of minors under age 18. In countering the concerns of the health advocates, “there is no hidden agenda [in supporting the e-cigarette legislation]. It is the right thing to do,” he said.

Voices Heard

With the effective mobilization of health advocacy organizations to oppose H 5678 at the April 23 House Finance Committee, Wood and some of her network partners and the Health Department would meet one week later with Melo to discuss their strong opposition to his e-cigarette bill. As a result, he offered to withdraw his bill for further study, effectively killing it. He invited the health advocates to work with him on a new bill, comprehensively defining e-cigarettes and vapor products and prohibiting their sale to minors, will be reintroduced next year, he says.

The saga of the e-cigarette legislative proposal is a good example that participating in the legislative process can go a long way especially for those who put the energy and effort into it. Sound testimony combined with bringing in your supporters to the table will most certainly get the attention of lawmakers. Yes, that’s Democracy in action.

Herb Weiss, LRI ’12, is a Pawtucket-based freelance writer who covers aging, health care and medical issues. He can be reached at hweissri@aol.com.