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Saturday, June 28, 2014

New Info about Fatigue in Multiple Sclerosis

Fatigue in Multiple Sclerosis Linked to Regional Brain Damage

fatigue in msFatigue, a common symptom of multiple sclerosis, could be a result of regional damage in the brain.A study published in Radiology by a group in Italy led by Massimo Filippi, MD, from Vita-Salute San Raffaele University showed that local, rather than global, atrophy is associated with fatigue.
Sixty five patients with multiple sclerosis, 31 fatigued and 32 non-fatigued, and 35 control participants were analyzed with a specialized type of brain scan: dual-echo, double inversion-recovery, high-resolution T1-weighted and diffusion-tensor magnetic resonance imaging. The degree of atrophy and damage to lesions, normal-appearing white matter, and gray matter were compared among groups.
Between both types of multiple sclerosis patients and control participants, there was more global damage to gray and white matter in multiple sclerosis patients. But compared to nonfatigued patients and control participants, fatigued multiple sclerosis patients had remarkable changes in specific regions of the brain. Regional atrophy in the right nucleus accumbens, right inferior temporal gyrus, and left frontal gyrus was associated with fatigue, measured by the Fatigue Severity Scale. Furthermore, the fatigued patients showed greater evidence of damage to the forceps major, left inferior frontoccipital fasciculus, and right anterior thalamic radiation.


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MS patients in B.C. now have access to two oral treatments subsidized by the provincially funded drug program Pharmacare.

New oral treatments available to multiple sclerosis patients

They mark an advance over injections and IV, says advocate
BY ERIN ELLIS, VANCOUVER SUN JUNE 27, 2014

Stock photo of pills spilling from a bottle. 

Stock photo of pills spilling from a bottle.
Photograph by: Ingram Publishing , Getty Images/Ingram Publishing


More than 12,000 multiple sclerosis patients in B.C. now have access to two oral treatments subsidized by the provincially funded drug program Pharmacare.

The latest entry approved this week for reimbursement is dimethyl fumarate (trade name Tecfidera), a drug that can be used on adults with relapsing-remitting multiple sclerosis, by far the most common sub-type of the disease.

Last spring, fingolimod (trade name Gilenya) was also approved by the province. If taken twice a day, the full cost of Tecfidera would be about $25,000 a year; Gilenya about $33,000, according to Pharmacare’s background information on the drugs.

“I think it’s significant because the other treatments thus far are injections or infusions (delivered intravenously) which are very invasive,” said Suzanne Jay, communications director for the MS Society of Canada, B.C. region. “It’s a tremendous relief to people to have the option of a pill.”

Canada has one of the highest rates of MS in the world with about 100,000 patients across the country.

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Friday, June 27, 2014

When You Want to Help But Don't Know How

Article Provided by:  Cherie C. Binns RN BS MSCN

A writer with MS shares what she has learned from others as she gathers stories about supporting someone with a chronic illness.

By: Jan Goben 
When you find out someone you care about has multiple sclerosis, there are ways you can help them, and things you may want to avoid doing.

Of course, everyone is different and you will need to use your discretion with each person. But when you approach someone with tears in your eyes and say, “I’m praying for you,” it can leave him or her surprised – shocked, even. When this happens to me, I wonder if this person has heard something that I don’t know: Am I dying? Well, no, I’m not.

Whether someone is dealing with MS or another disease, there are many ways to express your support. Go ahead and pray for your friends if you choose, but when you see them, usually a smile would be a good way to greet them. Here are some other ways you might help make your friend feel better:

Get in the Driver’s Seat
Offer to take your friend on a drive somewhere. One day, go to the farmers’ market to buy some oranges. Another day, your friend may say, “No, let’s go to the river.” Flexibility is precious. Go ahead, drive to the river and walk along the walkway, where he or she can hold the railing, or the fence – someone with MS can feel strong as they hold onto a railing that gives balance and allows them to take good strides.

Or maybe your friend wants to just sit in the car, windows open, and breathe in the fresh air. And listen to the radio. Or sing songs! Nurturing someone's soul can go a long way toward making them feel better. Bring a good book you've read recently.

Say Something Nice
Tell your friend how good they look, but remember that doesn’t mean they aren't feeling weak or sick, or don’t wish they had the strength they used to have. Go ahead and say, “You look great!” But add, “I know it's hard, but I'm proud of you for working so hard to keep your spirits up when it can be a depressing time.” You are telling your friend that they look great, but you're not dismissing the fact that they don't always feel so great.
#@*#&!?#!

“Sometimes you just have to swear!” This comes from a woman who was helping her friend through her MS diagnosis. Strong language has a way of releasing some of the energy that has been held in because of the build-up of pain in the body. While they may not need to swear, the idea here is to allow your friend to express emotions vigorously while they are with you.

Run a Bath
Soaking in warm water can help the muscles relax and lets the mind float away. Every person with MS has different experiences, and to some, warm water can aggravate symptoms and is unwelcome. But other people say they love the idea of a close friend helping them into a tub, so that they don't have to worry about feeling modest. For some, there is nothing as heavenly as floating in warm water and staring up at the blue sky (or at least the bathroom ceiling.)

Pick up the Phone
Don't be afraid to call. Many people have said that once their friends heard about their diagnosis, they suddenly disappeared. A simple phone call shouldn't be scary – nothing is expected other than, “Hello! How are you doing? I was just thinking of you and wanted to say hi.

Do a Chore or Two 
Cook and clean for the person you care about. What does that person love to eat? Chocolate chip cookies? Cornbread? Make a treat for someone special and you will always be thought of fondly.

Help someone in their garden. Bring some tulip bulbs to plant along the fence. Maybe sunflower seeds – something he or she can watch as it grows.

Or help your friend paint that table they've been planning to paint for quite a while now – it’s not a huge project. When someone feels so sick and weak and low-energy, it can mean so much when you show up and spend some effort to help with something. That project probably doesn't feel like a huge project to you, but may be a huge project to someone else

Help Maintain Status Quo 
This is something I’ve heard from different people with different diseases, to different degrees, and in different ways: “Most of all what helped was normalcy. I kept working through my treatments. My husband worked and my children kept on going to school. I kept routines. My husband and I walked daily. I consciously closed the door on fear every single day by reminding myself of the positives. I did things that made me happy – listening to favorite music, repeating (to myself) favorite quotes, taking photographs, spending time outdoors.” Helping your friend keep things as normal as possible is a great gift.

And finally, don’t be afraid to ask that someone you care about, “How can I help?” It’s the best way to find out what he or she really needs.

Jan Goben is writing a book about ways people can help out those with MS and other diseases. If you would like to tell about the best help you have received or other ways to help, please email her at jangoben@hotmail.com.  (Last reviewed 7/2010)



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Cooling Vest Programs for those with Multiple Sclerosis



The cooling vest program for the MS Foundation (MSF) has ended, but the MSAA (MS Association of America) still has there free cooling vest program going on.  

Check their website at http://mymsaa.org/msaa-help/cooling/







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Thursday, June 26, 2014

MS: Then and Now

By Cherie C. Binns RN BS MSCN

I have been a nurse since the early 1970s.  In one of my Medical/Surgical nursing courses, I vaguely remember hearing about neuromuscular diseases such as MS, MD and ALS and the special nursing care needs these patients presented.   I even saw a few of them in clinical settings prior to graduation.   However, it was not until 1992 when I became a Home Care Case Manager, that I really began to understand the implications of untreated MS that had run its course! 

Of my 30 patient case load, there were three who were receiving regular care as a result of complications of MS.   One needed a monthly catheter change and had huge bed sores that were larger than my fist.  He was 41 years old and had uncontrollable tremors and spasticity and what time he was not in bed was spent in a motorized wheelchair in a ground floor apartment essentially alone except when the aid came in morning and night to bathe, dress and transfer him from bed to wheelchair or back or when I came in to do wound or catheter care. His wife had left him because the care needs were too great and the resources too small.
The next was a retired RN (early 60s) who was in a hospital bed and never got out of it.   Again, monthly catheter changes were required and there was depression!  This depression seemed to have no rhyme or reason and was not responding to any treatment offered by her physicians.  I started bringing her printed out nursing continuing education programs and her days brightened. Ultimately, she would have post-tests completed when I walked in and, as I was doing her care, we talked about the complexities of caring for the cardiac patient (her field of expertise) and the depression began to lift.


The third was a morbidly obese woman who took three of us just to change her soiled linens and cleanse and re-position her.   She was angry, hostile, and had one of the most difficult personalities I had encountered in all of my career.  And yet, she had a sense of humor!   I would walk in the door with a joke and the whole tenor of the atmosphere would change as we bantered back and forth while care was done.

Continue reading


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MEDICAL MARIJUANA GAVE ME MY LIFE BACK! - an MS patient's story

MEDICAL MARIJUANA GAVE ME MY LIFE BACK!

April Barbosa, Columnist & Poet, MSnewsChannel.com
When I was 19 I smoked marijuana for the first time. I remember cruising with my primo and some homies and they said they were going to get high. I was scared I had never tried it and didn’t know what it would do to me, but I didn’t want them to know this so I asked if I could try. When it was my turn to hit the joint I inhaled but not into my lungs just into my cheeks. One of my homeboys laughed at me and showed me the proper way to inhale. I started coughing and thought I was going to suffocate. But lo and behold I survived. We sat there in the car smoking it out. When the joint was gone I sat there waiting for something to happen. I was more talkative while everyone else was quiet.

Weed made me talkative and not only that, it relaxed my body. I had never felt better. The pain that I was already used to slowly went away. That day was one of the best days of my life I had no pain. I became a pot head. My family disapproved so I kept it hidden. For years I smoked the only thing I didn’t like was it sometimes gave me a headache.

When I turned 20 I became pregnant with my 3rd child and decided it was time to “grow up” and quit smoking. I had a well-paying job and my husband and I had just bought our first house. Even though life was going good I was constantly in pain. I kept going to my doctor over and over only to be told it may be psychosomatic systems caused by stress. Then I was finally diagnosed with Multiple Sclerosis after years of testing. The doctors started me out on so many medications I can’t even remember half of the names but I do know most of them were for opiates for pain.
I had to go on medical leave and eventually quit my job because the opiates left me out of it and not taking them left me in constant pain. Each job I had would follow the same suit. Finally I was approved for disability. I read somewhere that Medical marijuana could be used for Multiple Sclerosis. I had “grown up” from that lifestyle and was kind of embarrassed to even think about getting high again. I was at a crossroads.

One day I woke up with one of the worst pains MS can bring trigeminal neuralgia. My husband saw how much pain I was in and remembered me telling him how marijuana had helped when I was younger. He went out and got me some. Yes it was illegal but it was something I really needed at that moment. I was in so much pain I couldn’t even think, let alone smoke by myself. So Joe helped me by giving me a shotgun hit, this means he took a hit and put his lips on mine and blew it into my lungs, all I had to do was hold it in.

After a few hits I slowly felt my face begin to loosen up. My muscles were no longer as tense and the pain was become bearable. That was the day my old views on marijuana being a drug that only hippies and teens used changed. I was ready to apply for my medical marijuana card. The process was difficult for me at first because I lived in a very very small town where all the doctors had agreed that they would not allow their patients to use marijuana medically. I felt so depressed. The doctor I asked to help me get certified instead offered to prescribe zanax and Oxycoton. I was disgusted by the fact that he felt it was ok to put me on addictive medications instead of this wonderful gift created by God.

I began researching ways I could get certified without including my family doctor. I found a new doctor at www.azmmjcc.com this wonderful clinic helped me by getting all my records from all the doctors I had been to. They then evaluated me themselves and determined I met the qualifications and approved my card.

It cost $150 for all the fees but it was very worth it. The first time I smoked medical marijuana I expected it to be exactly like the “black market” (lol) variety, but it wasn’t it was 20 times better! It took one hit to get me high. Just that one toke made my muscles relax and all the pain leave my body. I had bought Super Silver Haze a strain specifically for MS. It gave me energy and made me be able to think clearly. After that first high I knew I wanted to be an advocate for medical marijuana. I no longer was tired, groggy with medicine head all the time, now I was alert, energetic and pain free. That is why I say Medical marijuana gave me my life back.

Another positive thing about medical marijuana is it has a clean taste and doesn’t make me cough. The buds are bigger than regular buds and rarely have seeds. The leaves are sticky and flaky and very potent. I never get a headache with medical marijuana. The downside of medical marijuana is it is expensive what I get for $20 at a dispensary I could get for $10 on the street (Reggie aka black-market weed) but I guess if I really think about it, it’s not bad because it is way better than the strains on the street. I love my medical marijuana. © 2013 April M. Barbosa

Source: MS NewsChannel



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Wednesday, June 25, 2014

Falling for MS

Written by: 


Let’s cut right to the chase. If the nursery rhyme “Ring Around the Rosie” were to ever become an Olympic sport, folks with multiple sclerosis would be destined for glory. Not only do we “all fall down,” we fall down with such regularity that people might mistake us for soccer players. How to tell the difference? When we are writhing in pain, we’re typically not feigning injury (unless the cooler full of beer is just too long of a walk and you are trying to enlist spousal sympathy—a tactic that rarely works and I speak from experience).

It might seem obvious that researchers, in a large meta-analysis of nearly 600 MSers in four countries, concluded that folks with this disease are at a “high risk of falls and there are important associations between falls and MS-associated disability, gender and age.” Duh. Numb feet, wonky balance, rubber legs, bad eyesight, and a bumbly brain tend to influence such things. But if you read the full study, a more interesting picture appears. Permit me not to mince words: we largely are a stubborn group, with easily bruised egos, intent on not looking disabled.

Looking through the data, researchers zeroed in on one group in particular: the tweeners, those who are starting to need walking assistance but technically can go without. "It suggests that fall risk peaks at an EDSS score of 4.0 (when quantifiable mobility limitations are first acknowledged) and 6.0 (when a walking aid is required)." Do you wall and furniture surf, smudging up the house like a three-year-old? You are a tweener. Do you avoid taking a cane to work to so you won’t be known as the token disabled person? Yup, you are a tweener. Does the thought of using a walker mortify you, yet deep down you know it would probably help? Bingo: tweener.

And parsing the data further only reinforces what we already know. Ego plays a large role in our will to appear healthy and able-bodied. It's not the old geezers who are concerned about how they look in public (most already crossed that hurdle when they started wearing black socks with shorts), it’s the youngins. "Sustaining multiple falls was associated with younger age and the relative rate of falls was higher for younger participants." Predictably, gender matters, too. Who traditionally has the most easily bruised ego? Dudes. "In our sample the men had a significantly higher fall rate than the women, suggesting that men with MS who fall are at risk for frequent falls."






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Striking a Nerve: Brain Exercise and Cognitive Decline

This article looks at “brain games” and their reported help in preventing cognitive decline.   The implied finding is that people who are used to mental stimulation throughout their lives tend to continue to seek out mental stimulation (brain games, etc) in later years.   That group of people tend to cognitively decline at a slower rate than those with lower levels of education who have never sought to stimulate their brains with challenging games or activities.
Click
http://www.medpagetoday.com/Neurology/Dementia/46486  for the full story:



Provided by: Cherie C. Binns RN BS MSCN


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The Benefits of Aquatic Exercise and MS

By: Matt Cavallo

Walking was always something that I took for granted until that one day that I couldn’t do it anymore. Then, as I watched the world walk by me, I yearned to be up on my feet ambling about. The problem was that no matter how strong my mind and determination were, my legs would simply not respond. It was hard for me to understand that the problem was in my spine and no amount of mental fortitude could overcome the spinal lesions caused by multiple sclerosis.
I was confined to small, assisted steps. I was able to travel only from my bed or couch to the bathroom and back. My wife brought food and drinks to me when she was home but when she was at work, I usually didn’t eat or drink. I was ashamed that I lost functionality the way I did. I didn’t want people to take pity upon me. I had always been this big, strong athletic guy and now I couldn’t even walk down three steps to get out of my house.
My doctor was confident that I could regain functionality and learn how to walk again. I wasn’t so sure. He said that the Solu-medrol would act to reduce the swelling in my spine, and little by little sensation would return to my legs. He did caution me that I would have to relearn how to walk and ordered me to have aquatic therapy. I was skeptical, but I gave it a shot.
The results were truly amazing. When I started exercising in the pool, my legs felt lighter and easier to move. The exercises really help to strengthen and balance me on my feet. While I was in the water, I felt free again. After three weeks of aquatic therapy, I was walking with a cane for short distances. I was not negotiating steps or hills, but I could get around the house on my own. More importantly, I was able to go to the bathroom again by myself. I was amazed at my progress. In just three short weeks, I was completely independent with walking.

Today, if you saw me in the street you wouldn’t think that I ever lost function of my legs. One of my secrets is that I continue to work out in the pool. I live in Arizona and can use my pool most of the year.

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REALLY? – But You Look SO GOOD! - a New MS Education program scheduled for August 9th in Pensacola, Florida


Pensacola Florida - August 9, 2014

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The MS Views and News organization invites you to an informative MS education program

REALLY? – But You Look SO GOOD!

A Look at the Invisible Symptoms of MS

Treatment Options, Adherence, Compliance,
and Primary Symptoms that cause dysfunction
                                                                                           
Presented By:
Brian Steingo MD - Neurology
 Adherence, Compliance, Switching Meds, Treatment Options and MS Relapse
PLUS Dietary & Self Aspects


Date: Saturday, August 9, 2014
10:50am – Registration
11:25am – Program Begins
With Complimentary Luncheon

Program Location:  Crowne Plaza Pensacola
200 East Gregory Street - Pensacola, Florida 32501  

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R.S.V.P. Required
RSVP online at: www.events.msvn.org
If No Internet, call: (203) 550-7703
(No Children under 16 will be permitted unless the pediatric child has Multiple Sclerosis)



This Education Program is Provided with a Charitable Sponsorship from





Tuesday, June 24, 2014

Evolution of multiple sclerosis treatments

Evolution of multiple sclerosis treatments: an interview with Mike Panzara, Head of MS & Neurology Clinical Development, Genzyme


Interview conducted by , BA Hons (Cantab)
insights from industryDr. Michael PANZARAGroup VP and Therapeutic Area Head, Multiple Sclerosis
​and Neurology, Genzyme




Please can you give a brief history of multiple sclerosis (MS) treatments? 

The last 20 years have been defined by progress and innovation in the multiple sclerosis (MS) field, with now 10 approved treatment options available for people living with relapsing MS, the most common form of the disease.

Though none of these treatments are a cure, they do offer people living with MS and the physicians who treat them a wide range of different therapy options, each that carries its own unique benefits and risks in terms of efficacy, safety and convenience. 

Finally having a variety of treatment options to choose from has changed the lives of many of those with this disease but has added complexity, making it that much more important for people living with MS and their physicians to take the time to discuss the benefits and risks associated with each treatment. 

The selection of treatment is highly individualized and is ultimately based upon the combination of expected benefits, risks, tolerability, and convenience that offer the best chance for a favorable outcome and an improved quality of life.

Despite periods in which people afflicted by MS may appear free of physical signs of the disease, it is progressive, and research tells us that the disease is silently worsening, even from its earliest stages, in most cases leading to a more overtly progressive disease course resistant to treatment.  Therefore, it has become increasingly common to start treatment as early as possible following diagnosis in the hopes of slowing the accumulation of permanent disability. 

When I first began working in the MS area nearly 20 years ago, these kind of treatment options just did not exist, so it’s exciting to see how this landscape has evolved with continued innovation. 

Genzyme has one treatment on the market in the U.S. (AUBAGIO), with another under FDA review (LEMTRADA), and is building a pipeline not just focused on treating relapsing MS, but also progressive forms of the disease where the unmet need for new treatments is greatest.   

How has our understanding of the causes of MS changed over this time and what impact has this had on MS management?

Despite significant progress in our understanding of the causes of MS, there is still much that is unknown.  MS is an autoimmune disease where the body’s immune system attacks cells in the brain and spinal cord.  These cells are unable to function properly and eventually die, leading to the clinical signs and symptoms people with MS experience.

It is clear that both genetic and environmental factors play important roles in the onset and progression of the disease.  An understanding of the details of this process has grown over the past many years, and these insights have led to many of the treatments for relapsing MS that we have today.

However, while we have many options available to treat relapsing MS, lack of understanding of the mechanisms of disease progression has been a barrier to the development of treatments for progressive forms of the disease. 

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Understanding Dysphagia

By Jeri Logemann, Ph.D., Charles A. Stewart, M.D., Jane Hurd, MPA,
Diane J. Aschman, MS, Nancy L. Matthews, MA


 
At the age of 78, Maxine was a poster girl for an active senior lifestyle. She loved being the unofficial social director of her assisted living community in the Texas Hill Country, organizing shopping trips to San Antonio and calling the numbers at the daily bingo game. Physically, Maxine was in great shape. She took a brisk walk every morning and had a regular annual physical exam. Her only chronic health problem was mild Parkinson’s, which she controls with daily medication.

Since Maxine especially enjoyed sitting with her special friends at dinner, she was very concerned when she began to experience prolonged coughing fits at the table. At first she thought the problem might be simply trying to talk, eat, and breathe at the same time – so she decided to listen more and speak less. Things got better for a while, though her friends did notice how quiet and subdued she seemed.

Eventually, Maxine began to skip going to dinner and ate in her room instead. She also began to have difficulty swallowing her medication and vitamins. Sometimes she needed a whole glass of water to get them down. Worried, she began to have trouble going to sleep, which made her look tired. This change was very apparent to Maxine’s daughter when she came to visit from out-of-state. Maxine had always been so upbeat and positive. Now, for the first time, she seemed confused and depressed.

Dysphagia:
What we don’t know can hurt us.

Dysphagia is the medical term for difficulty or inability to swallow. Although it’s rarely talked about, dysphagia can have an immediate negative impact on quality of life. Eating, after all, is a pleasurable group activity. A good meal satisfies more than just the appetite. This may be especially true for residents of independent or assisted living communities, for whom mealtimes are a highlight of the day. Beyond the social issues, dysphagia can also have serious health-related consequences, including malnutrition, dehydration, and aspiration pneumonia.

Yet difficulties in swallowing are not a natural result of aging. They are treatable and preventable, with recognition of the problem as the first step. However, there is evidence that dysphagia is often undiagnosed or untreated: a recent study in Los Angeles County found incidence of swallowing issues in approximately 11 percent of seniors in assisted or independent living facilities. Administrators in these facilities confirm that residents’ swallowing disorders are often unnoticed until the condition has become fully established. At that point, a feeding tube may become necessary. As a result, the resident may need to be transferred to a skilled care environment where appropriate support can be provided. Ignored or unidentified, dysphagia can lead to a basic loss of independence and self-sufficiency.

Recognition, Education, Control
Dysphagia has a variety of causes and can manifest in a variety of ways. To identify the problem, the right questions need to be asked in easily understood language. It may also be necessary to eliminate some common myths and misunderstandings. Education, therefore, is a key element in bringing dysphagia under control. This can begin with an understanding of the swallowing process itself.

dysphagia

In Picture A, a morsel of food has been chewed and is ready to enter the throat.
The food then pushed toward the back part of the mouth, against the muscles of the pharyngeal wall as seen in Pictures B and C.

In Pictures D and E, the airway lifts and closes off when the soft pallet closes, protecting the entrance to the nose. Then the entrance to the esophagus opens, allowing food to bypass the airway and enter the esophagus.

Finally, in Picture F the food passes down the esophagus. The airways reopen to allow continued breathing.

When this sequence is disrupted at any point, dysphagia can result. Because individuals may seek to avoid the embarrassment of coughing or choking during meals, they isolate themselves to the extent that early signs go unrecognized. In making the diagnosis, it’s important to be aware of conditions such as Parkinson’s or gastro-esophageal reflux (GERD), which can heighten vulnerability. Dysphagia may also arise as a side effect of medication often used for arthritis, Parkinson’s disease, depression and other common conditions.

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