In this ARC TALKS webinar, Briana Pineau, MS, RD, LDN, a registered dietician at Boston Medical Center, discusses the role nutrition can play in the management of amyloidosis symptoms. In addition to covering gastrointestinal involvement associated with various types of amyloidosis, Briana covers the broader health benefits of a balanced diet.
Many types of amyloidosis can affect patients’ gastrointestinal (GI) tract, causing painful, annoying, or even debilitating symptoms. It is common for patients with amyloidosis to experience GI involvement and in fact, some patients may have GI-related symptoms as their most predominant sign or chief complaint.
In this ARC Talks, Dr. Kevin Alexander, a cardiac amyloidosis specialist from Stanford University, discusses the cardiac signs and symptoms to recognize, treatment and management options for each type of Amyloidosis and the future direction of research in the field.
In this webinar Isabelle Lousada shares her experiences with amyloidosis and the lessons learnt on how to become an empowered and informed patient. Lisa Mendelson, nurse practitioner from Boston University’s Amyloidosis Program provides a valuable medical perspective about how to build a successful relationship with your care team. Original presentation date June 23, 2022.
Many types of amyloidosis can affect patients’ nerves, causing painful, annoying, or even debilitating symptoms. It is common for patients with amyloidosis to experience neuropathy and in fact, some patients may have nerve-related symptoms as their most predominant sign or chief complaint.
In this ARC Talks presentation, Mental Health Matters: Caring for Your Wellbeing, rare disease mental health expert Kym Winter will equip you with the resources and tools you need to take care of your mental health.
In this interactive session, you will be introduced to the Stress Bucket Approach, which is a simple way of thinking about and looking after your own - and others’ - emotional wellbeing in order to live well with the impacts of a rare disease such as amyloidosis. Original presentation date February 23, 2022
In this ARC Talks special presentation, Coffee with ARC, some members of the ARC team will provide an overview of ARC's history and areas of focus, as well as our plans for 2022 and beyond. Original presentation date December 9, 2021
In amyloidosis, common symptoms such as gastrointestinal manifestations and neuropathy are often the most troublesome for patients. In our ARC Talks Webinar for patients and caregivers, amyloidosis experts from across multiple specialties explain approaches for symptom management. Our experts provide you with the knowledge you need to live well with amyloidosis. Original presentation date October 26, 2021
In this ARC Talks webinar, Dr. Kelsey Barrell from the University of Utah explains what causes neuropathy and other neurological symptoms in amyloidosis patients and offers suggestions to help manage these symptoms.
Nancy Verel, a nurse at the Cleveland Clinic, shares her story about her family's journey through her husband's AL amyloidosis diagnosis and treatment. Robert David from BMC Cancer Support Programs provides coping and support strategies for caregivers.
Physical and Occupational Therapy – Managing Your Amyloidosis
In this patient webinar, Mayo Clinic's occupational therapist Sarah Dahlhauser, OTD, OTR/L, and physical therapist Sarah Boyd, PT, DPT, discuss exercise principles for maintaining mobility and function, and home modifications for improved safety for amyloidosis patients.
This webinar covers access to innovative new therapies through expanded access programs with guest speakers Jennifer Miller, PhD, Assistant Professor at Yale University School of Medicine and Alison Bateman-House, PhD, MPH, Assistant Professor at NYU School of Medicine.
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In this ARC TALKS webinar, Briana Pineau, MS, RD, LDN, a registered dietician at Boston Medical Center, discusses the role nutrition can play in the management of amyloidosis symptoms. In addition to covering gastrointestinal involvement associated with various types of amyloidosis, Briana covers the broader health benefits of a balanced diet. Watch to learn more about nutrition and how adding a dietitian to your care team may be valuable for your overall health and wellness journey.
Original Presentation Date:
World Amyloidosis Day, October 26, 2022.
After the webinar, Briana spent time following up on your questions.
For those struggling with fatigue, what are some exercise recommendations?
I always recommend talking with your doctor before starting any exercise regimen. It may be helpful to request a physical therapy consult if safety is a concern. However, if you are steady on your feet, walking, yoga, and light weights under medical supervision may be a good place to start.
How many grams of protein should I eat per day? And what are considered healthy protein sources?
I wouldn’t be able to tell you how much protein to eat each day without knowing your weight and more about you (labs, diagnosis etc.).
Protein is found in foods such as chicken, fish, turkey, eggs, red meat (pork, beef), quinoa, beans, lentils, nuts/nut butter, soy, dairy, peas and whole grains. It is recommended to eat a variety of proteins. Ideally a person’s diet is high in lean (chicken/fish) and plant based (nuts/seed/soy/beans/lentils) protein. It is best to limit intake of red meat and avoid processed meats.
Do you have any recommendations for constipation over the counter laxatives? Foods?
You should speak with your medical provider if you are requiring the use of chronic medications to help with bowel regularity.
Foods that are high in fiber can help with constipation however you also want to make sure that you are consuming enough water. Dehydration and a high fiber diet can make constipation worse.
Prunes/warm prune juice can help improve constipation. Some people feel that a cup of warm water and lemon first thing in the morning on am empty stomach is helpful too.
Benefiber mixed in water (start with 1 tsp), coffee, or tea can also help. Recommend starting with one serving daily and can increase up to 3-4x/day as needed.
The key to improve constipation is to have enough fiber in your diet, drink enough fluid, and get enough movement.
Any diet recommendations for those who alternate between diarrhea and constipation?
I would start by including more soluble fiber into your diet. Also, you will want to assure adequate hydration.
Are there any recommendations for amyloidosis patients who are plant based? Is a B12 supplement a good idea?
You will want to make sure that you are incorporating the correct amount of protein in your diet.
Adding a Vitamin B12 supplement will depend if you are plant based or completely vegan.
It would be best to speak with your doctor or a dietitian about your specific situation in more depth.
You could request your doctor draw a Vitamin B12 lab and start from there.
Edema with stomach bloating sometimes prevents interest in eating much. Do you have any recommendations for those trying to gain weight? Any thoughts on drinks such as Ensure?
It can be very hard to consume enough calories when you aren’t interested in eating and your get full very quickly. I recommend eating every 2-3 hours even if it is just 2-3 bites of food. Consider setting an alarm as a reminder that it is time to eat. Initially, don’t worry about the portion, allow for small portions, and focus on the regularity of eating.
You will also want to include nutrient dense foods at are high in calories such as avocado, oils, nuts/nut butter, full fat dairy etc.
Ensure and other oral nutrition supplements can be helpful. I try and encourage my patients to use them as “snacks” and try not to replace their meals with these products. However, they are a convenient way to get in added nutrition when you are busy at appointments or very fatigue and have limited energy to prepare a snack. You should always speak with a Dietitian about which supplement is most appropriate for you.
Is a low sugar diet recommended for amyloidosis patients?
Not generally. It will depend on if the patient has Diabetes. If so, they would require a carbohydrate-controlled diet.
What is gastroparesis, can it cause constipation?
Gastroparesis is the slowing of the stomach muscles. This means that food is digested and moves out of your stomach more slowly. The most common symptoms are feeling full, bloating, nausea, and vomiting.
Why are so many amyloidosis patients malnourished?
There are a lot of symptoms of amyloidosis that make it challenging to get in adequate nutrition (nausea, vomiting, gastroparesis, poor appetite, fatigue, diarrhea, and malabsorption). Poor nutrition paired with a hyper metabolic disease can cause malnutrition quickly.