Family Survey for Diagnosing Periodic Paralysis

 

Family Survey for Diagnosing Periodic Paralysis

This was taken from our first book about Periodic Paralysis: Living With Periodic Paralysis: The Mystery Unraveled

This was geared for Andersen-Tawil Syndrome which is the most severe form and has physical and other characteristics that accompany the symptoms that most of us are familiar with. (I, and other family members, are diagnosed with this)

I was able to gather the needed information by contacting family members by email and the phone with a survey asking several questions and made a video available for them to see me during paralytic episodes. The following is the note and the questions I sent:

 

“Hello, family members,

 

Please bear with me. This email may be a little strange and is not meant to scare you. However, the doctors are very close to a final diagnosis for me, which appears to be hereditary. I need to know if other family members have these issues for the medical records. I need to ask a few rather odd questions. I hope you will help me with this. If I get this diagnosis, you will need to know about it. It is a very, very, rare and serious disease and will need to be treated if anyone in your family has it. Even if they have some of the symptoms, they may not have it get serious, but they will need to be evaluated to make sure, due to the heart issues. And, hopefully, to avoid going through what I went through if they can get proper treatment.

 

Do you have a problem with low or high potassium?

 

Do you have scoliosis?  

 

Do you have webbed or barely webbed 2nd-3rd toes? (Some of us have it; in fact, Shari's son was born with them fully webbed.)

 

 Do you have curved toes?

 

 Do you have a pinkie finger that curves toward the ring finger?

 

Do you have unusually short fingers?

 

Do you have a small mouth with crowded teeth?

 

Do you have small lower jaw?

 

Do you have teeth missing (born without them or never came in after the baby teeth fell out? (i.e., I never had wisdom teeth and after my eye teeth fell out there were not permanent ones to replace them...so I am missing 6 teeth)

 

Do you have heart palpitations, fast heartbeat or any kind of heart problem?

 

Do you have "clubbed" thumbs?

 

Do you have problems doing things with their hands and arms above their heads?

 

Do you have periodic muscle weakness or paralysis? (May be just a feeling of a limb going to sleep, especially after sitting for a while.) (May wake up at night with hands numb or trouble walking upon getting up in the morning.)

 

Do you have periodic extreme, muscle weakness after eating large meals with a large amount of carbohydrates, or sugar, stress, heat or cold, taking medications, exercise or exertion (can be delayed to the next day)?

 

Do you have problems walking upstairs or uphill?

 

Do you have weakness, dizziness etc. after fasting?

 

Do you have episodes of passing out?

 

Do you have problems with side effects or opposite effects of prescription medications or over-the-counter medications?

 

Do you have problems with anesthesia or lidocaine?

 

These things may be very subtle...not real obvious...

 

I know this all sounds a little crazy, but it is very important to our family and me. If I get this diagnosis, you will need to know about it. It is a very, very, very, rare and serious disease and will need to be treated. 

 

I hope none of these things are a problem for you. That would be great news.

 

If you want you may call to talk about this.

Love you, Mom, Grandma, Susie, Aunt Susie”

 

Many of my family members responded. The answers amazed me and confirmed for me that we did indeed have a larger problem in my family than I had even realized. Much of my extended family also had similar problems. 

Our books are available at:
PPN Books
www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1

Communicating Needs and Managing Relationships with Family and Friends Regarding Periodic Paralysis

Communicating Needs and Managing Relationships with Family and Friends Regarding Periodic Paralysis (PP)

Managing relationships with family and friends when living with Periodic Paralysis (PP) can be challenging, especially when they may not fully understand the condition. Here are some strategies and tips to effectively communicate your needs and manage these relationships:

1. Educate Your Loved Ones

• Informational Sessions: Organize informal sessions where you can share information about PP. Use reliable sources to explain the condition, its symptoms, and how it affects your daily life.
• Written Materials: Provide pamphlets, articles, or books that explain PP in detail (our PPN books). Websites like the National Organization for Rare Disorders (NORD) or academic journals can be good resources.

2. Open and Honest Communication

• Express Your Feelings: Share your feelings and experiences openly. Let your loved ones know how PP impacts you emotionally and physically.
• Be Specific About Needs: Clearly articulate what you need from your family and friends. Whether it’s help with daily tasks, emotional support, or simply understanding your limitations, being specific can help.

3. Set Boundaries and Expectations

• Define Boundaries: Clearly define what you can and cannot do. This helps manage expectations and reduce frustration on both sides.
• Consistent Communication: Keep communication consistent. Regularly updating your loved ones about your condition and any changes can help them stay informed and supportive.

4. Involve Them in Your Care

• Care Team: Involve family and friends in your care routine where possible. This could include attending medical appointments or helping with specific tasks.
• Shared Responsibilities: Delegate tasks that you cannot perform during an episode. This not only helps you but also allows them to contribute and understand your condition better.

5. Use Support Groups and Resources

• Support Groups: Encourage your family and friends to attend support group meetings or online forums with you. Hearing from others who have similar experiences can be enlightening.
• Professional Counseling: Sometimes, professional help can bridge the understanding gap. Family therapy or counseling sessions can be beneficial.

6. Utilize Communication Tools

• Medical Alerts: Use medical alert bracelets or apps that can quickly inform others about your condition in case of an emergency.
• Action Plans: Create and share an action plan for what to do during a PP episode. Ensure that your family and friends know how to respond appropriately.

7. Practice Patience and Empathy

• Understand Their Perspective: Acknowledge that it might be difficult for them to fully grasp what you are going through. Patience and empathy can go a long way in fostering mutual understanding.
• Celebrate Small Victories: Recognize and celebrate their efforts to understand and support you, no matter how small. Positive reinforcement can encourage more supportive behavior.

8. Adapt Communication Styles

• Tailor Your Approach: Different people respond to different communication styles. Tailor your approach based on whether your loved one prefers detailed information, emotional conversations, or visual aids.

By implementing these strategies, you can foster better understanding and support from your family and friends, ultimately improving your relationships and quality of life. Remember, effective communication is a two-way street and requires effort from both sides to be truly successful.

References

1. National Organization for Rare Disorders (NORD). (n.d.). Primary Periodic Paralysis. Retrieved from https://rarediseases.org/rare-diseases/primary-periodic-paralysis/
2. Mayo Clinic Staff. (2022). Periodic Paralysis. Mayo Clinic. Retrieved from https://www.mayoclinic.org/diseases-conditions/periodic-paralysis/symptoms-causes/syc-20355591
3. Office of Rare Diseases Research (ORDR-NCATS). (n.d.). Periodic Paralysis. Genetic and Rare Diseases Information Center (GARD). Retrieved from https://rarediseases.info.nih.gov/diseases/7422/periodic-paralysis

 

Image depicts a warm and supportive scene, emphasizing empathy and understanding for a person with Periodic Paralysis during a heartfelt conversation with family and friends

 

Managing Stress Using Natural Techniques

Managing Stress Using Natural Techniques

Managing stress naturally is crucial for individuals with varying forms of Periodic Paralysis, as stress can trigger episodes. Here are several natural techniques to help manage stress:

1. Mindfulness and Meditation

• Mindfulness Meditation: Practicing mindfulness can help you stay present and reduce anxiety. Techniques such as focusing on your breath and observing your thoughts without judgment can be very beneficial.
• Reference: Kabat-Zinn, J. (2003). Mindfulness-based interventions in context: past, present, and future. Clinical Psychology: Science and Practice, 10(2), 144-156.

2. Yoga

• Gentle Yoga: Yoga combines physical postures, breathing exercises, and meditation. Gentle yoga specifically can help reduce stress without putting too much strain on the body.
• Reference: Ross, A., & Thomas, S. (2010). The health benefits of yoga and exercise: a review of comparison studies. Journal of Alternative and Complementary Medicine, 16(1), 3-12.

3. Deep Breathing Exercises

• Deep Breathing: Techniques such as diaphragmatic breathing can activate the body's relaxation response, reducing stress and anxiety.
• Reference: Jerath, R., Edry, J. W., Barnes, V. A., & Jerath, V. (2006). Physiology of long pranayamic breathing: neural respiratory elements may provide a mechanism that explains how slow deep breathing shifts the autonomic nervous system. Medical Hypotheses, 67(3), 566-571.

4. Progressive Muscle Relaxation (PMR)

• PMR: This technique involves tensing and then slowly relaxing each muscle group in the body, which can help reduce physical tension and stress.
• Reference: Conrad, A., & Roth, W. T. (2007). Muscle relaxation therapy for anxiety disorders: It works but how?. Journal of Anxiety Disorders, 21(3), 243-264.

5. Nature and Outdoor Activities

• Spending Time in Nature: Activities such as walking in the park or gardening can have a calming effect and reduce stress levels.
• Reference: Bowler, D. E., Buyung-Ali, L. M., Knight, T. M., & Pullin, A. S. (2010). A systematic review of evidence for the added benefits to health of exposure to natural environments. BMC Public Health, 10(1), 456.

6. Art and Music Therapy

• Creative Arts: Engaging in creative activities like drawing, painting, or listening to music can be a great way to manage stress and express emotions.
• Reference: Stuckey, H. L., & Nobel, J. (2010). The connection between art, healing, and public health: A review of current literature. American Journal of Public Health, 100(2), 254-263.

7. Adequate Sleep

• Sleep Hygiene: Ensuring regular, good-quality sleep can significantly reduce stress levels. Techniques include maintaining a consistent sleep schedule, creating a restful environment, and avoiding stimulants before bedtime.
• Reference: Banks, S., & Dinges, D. F. (2007). Behavioral and physiological consequences of sleep restriction. Journal of Clinical Sleep Medicine, 3(5), 519-528.

8. Diet and Nutrition

• Balanced Diet: Consuming a diet rich in whole foods, including fruits, vegetables, lean proteins, and whole grains, based on the individuals form of PP can help stabilize mood and reduce stress.
• Reference: Jacka, F. N., Mykletun, A., Berk, M., Bjelland, I., & Tell, G. S. (2011). The association between habitual diet quality and the common mental disorders in community-dwelling adults: the Hordaland Health Study. Psychosomatic Medicine, 73(6), 483-490.

9. Herbal Supplements

• Herbal Remedies: Certain herbs such as valerian root, chamomile, and lavender have been traditionally used to reduce anxiety and stress. However, it's essential to consult a healthcare provider before using them.
• Reference: Lakhan, S. E., & Vieira, K. F. (2010). Nutritional and herbal supplements for anxiety and anxiety-related disorders: systematic review. Nutrition Journal, 9(1), 42.

Implementing these natural stress management techniques can help individuals with Periodic Paralysis maintain a more balanced and healthy life. Always consult with a healthcare professional before starting any new regimen.

The image demonstrates several ways to manage stress naturally, including yoga, meditation, enjoying nature and art.

 

Diet for a Young Man with Hyperkalemic Periodic Paralysis

Diet for a Young Man with Hyperkalemic Periodic Paralysis

Maintaining a balanced diet is crucial for managing Hyperkalemic Periodic Paralysis (HyperKPP) and building strength while staying lean. A pH-balanced diet, also known as an alkaline diet, can help achieve this balance. Here's a guide tailored for a young man looking to build muscle and eat well:

Understanding pH Balance

Our bodies should ideally be 30% acidic and 70% alkaline. Many individuals with HyperKPP suffer from chronic metabolic acidosis, meaning their bodies are too acidic. To counteract this, consuming more alkaline foods is essential. A few may experience metabolic alkalosis (too much alkalinity), but the 70/30 balance still applies.

Potassium Intake

Managing potassium intake is critical for those with HyperKPP. While the specific potassium needs may vary, it’s essential to monitor and adjust your diet to maintain the appropriate levels. This will help prevent episodes of muscle weakness and other symptoms.

Meal Frequency

Like those with diabetes, it’s beneficial to eat smaller, more frequent meals rather than three large ones. This helps maintain stable glucose levels and prevents large spikes in blood sugar, which can trigger symptoms.

Foods to Avoid

• Processed Foods: These are often loaded with white sugar, fillers, additives, hormones, antibiotics, white flour, and artificial colorings. All these can be significant triggers for symptoms.
• Gluten: Opting for a gluten-free diet can be beneficial for many with HyperKPP, as gluten can sometimes exacerbate symptoms.

Foods to Include (Make sure to check for low potassium and low sugar foods)

• Lean Proteins: Chicken, turkey, fish, and plant-based proteins can help build muscle without adding excess fat.
• Alkaline Foods: Vegetables, especially leafy greens, fruits, nuts, seeds, and legumes help maintain the pH balance.
• Whole Grains: Rice, bulger, and barley provide essential nutrients and sustained energy.
• Healthy Fats: Olive oil, some margarines and some nuts are great sources of healthy fats that support muscle growth and overall health.

Example Meal Plan

Breakfast:

• Scrambled egg whites with mushrooms and a side of blueberries
• A small bowl of white rice with almond milk and strawberries

Mid-Morning Snack:

• A handful of unsalted macadamia nuts or pecans and an apple (check potassium content)

Lunch:

• Grilled chicken breast with a mixed green salad, including lettuce, cucumber, and bell peppers, dressed with olive oil and lemon juice
• A serving of white rice or barley

Afternoon Snack:

• Greek yogurt with chia seeds and a few bites of pineapple

Dinner:

• Baked cod with steamed green beans
• A side of mixed greens with a light vinaigrette

Evening Snack:

• A smoothie made with almond milk, a small amount of carrot, a scoop of protein powder, and a handful of blueberries

Hydration

Staying hydrated is crucial. Drink plenty of water throughout the day, and consider herbal teas or water infused with lemon for added alkalinity.

Supplements

Consult with a healthcare provider, who understands Periodic Paralysis, about supplements that might be beneficial, such as magnesium, calcium, or other vitamins and minerals that support muscle function and overall health.

By following these guidelines, a young man with Hyperkalemic Periodic Paralysis can build strength, maintain a healthy weight, and manage his condition effectively. Always consult with a healthcare professional before making significant changes to your diet or exercise routine.

References

1. National Institutes of Health (NIH): Periodic Paralysis Information Page. Available at: NIH Periodic Paralysis
2. Mayo Clinic: Periodic Paralysis Overview. Available at: Mayo Clinic Periodic Paralysis
3. Johns Hopkins Medicine: Periodic Paralysis. Available at: Johns Hopkins Periodic Paralysis
4. Academy of Nutrition and Dietetics: The Alkaline Diet: Is There Evidence That an Alkaline pH Diet Benefits Health? Available at: Alkaline Diet
5. American Dietetic Association: Nutrition Care Manual. Available at: Nutrition Care Manual
6. Journal of Clinical Endocrinology and Metabolism: The Role of Nutrition in Muscle Function. Available at: Role of Nutrition in Muscle Function
7. British Medical Journal (BMJ): Dietary Management in Periodic Paralysis. Available at: BMJ Dietary Management

These references provide comprehensive information and guidance on managing Hyperkalemic Periodic Paralysis through diet and nutrition. Always consult healthcare professionals for personalized advice.

Image of a young man with Hyperkalemic Periodic Paralysis preparing a meal based on a low potassium and pH balanced diet.

Low Potassium Diet:
https://www.kidney.org/sites/default/files/NKF_Guide_to_Low_Potassium_Diet_Final_0.pdf

pH Balanced Diet:
https://greenopedia.com/alkaline-acid-food-chart/


 

Understanding the Impact of Periodic Paralysis on Vision and Eye Health

Understanding the Impact of Periodic Paralysis on Vision and Eye Health

Periodic Paralysis (PP) is primarily known for its effects on muscle function due to disruptions in electrolyte balances, particularly potassium. While its impact on limbs and sometimes respiratory muscles is well-documented, its effect on ocular muscles and overall vision is less commonly discussed but equally significant. This article delves into how PP can affect vision, the implications of certain eye exam procedures, and natural ways to manage these ocular symptoms.

Periodic Paralysis and Vision

The muscles controlling eye movements are not immune to the effects of PP. Episodes of muscle weakness can extend to the ocular muscles, leading to symptoms such as:

1.   Diplopia (Double Vision): This occurs when the muscles that align the eyes fail to coordinate properly, causing the eyes to look in different directions and send mismatched images to the brain.

2.   Ptosis (Drooping Eyelids): Weakening of the muscles that lift the eyelids can result in ptosis, which can cover part or all of the pupil, obstructing normal vision.

3.   Ophthalmoplegia (Eye Movement Weakness): This involves paralysis or weakness of the eye muscles, impairing the ability to move the eyes in one or more directions.

Eye Drops Used in Eye Exams

During routine eye examinations, ophthalmologists often use diagnostic eye drops. Two common types include:

• Mydriatics: These are used to dilate the pupils, allowing a better view of the internal structures of the eye. However, they can affect vision by causing light sensitivity and blurred vision for hours after their application.
• Cycloplegics: These not only dilate the pupil but also temporarily paralyze the ciliary muscle of the eye, which is responsible for focusing. This can result in prolonged blurred vision, particularly in close vision.

For individuals with PP, the use of these drops can pose additional challenges:

• Increased Sensitivity: People with PP may experience heightened sensitivity to the active ingredients in these drops, potentially triggering muscle weakness.
• Recovery Time: The temporary paralysis induced by cycloplegics might exacerbate existing muscle weakness symptoms, prolonging recovery from an episode.

Natural Management of Ocular Symptoms in PP

Managing the ocular symptoms of PP naturally involves strategies aimed at overall health and specific eye care:

1.   Nutrition: Consuming a diet rich in vitamins A, C, E, and minerals like zinc and selenium can support eye health. Foods high in these nutrients include carrots, leafy greens, nuts, and seeds.

2.   Sunglasses: To manage light sensitivity, especially after eye exams involving mydriatic drops, wearing sunglasses with full UV protection can help protect the eyes from harsh light and discomfort.

3.   Eye Exercises: While not a substitute for medical treatment, regular eye exercises can help strengthen the ocular muscles and improve coordination, which may reduce the severity of diplopia and ophthalmoplegia during remission periods.

4.   Adequate Rest: Ensuring sufficient rest and sleep can help in the recovery of muscle strength, including the muscles around the eyes, potentially reducing the frequency and severity of ocular symptoms.

5.   Stress Management: Techniques such as yoga and meditation can reduce overall stress, which may indirectly help in managing the triggers for PP episodes that could affect eye muscles.

Conclusion

While PP is primarily a mineral metabolic disorder, its impact on eye health can significantly affect quality of life. Understanding how to manage these symptoms naturally, alongside regular consultations with healthcare professionals, is crucial for maintaining not only general health but also optimal eye health. As with any condition affecting the eyes, regular check-ups with an ophthalmologist are recommended to monitor the condition's progression and adjust care plans accordingly.

The image is of a young woman with Periodic Paralysis getting her eyes examined and new glasses.

References:

References for "Understanding the Impact of Periodic Paralysis on Vision and Eye Health"

1. Johns Hopkins Medicine, Wilmer Eye Institute.
• Source: Wilmer Eye Institute publications and patient education materials.
• Relevant Information: Detailed explanation of ocular muscle involvement in systemic muscle disorders.
• Usage: Provided background on the ocular effects of muscle-related disorders.
2. American Academy of Ophthalmology (AAO).
• Source: AAO's clinical guidelines and educational materials on eye health.
• Relevant Information: Effects of diagnostic eye drops like mydriatics and cycloplegics on vision.
• Usage: Explained the implications of eye drops used during eye exams.
3. National Eye Institute (NEI), National Institutes of Health (NIH).
• Source: NEI's research publications and health information on eye diseases and conditions.
• Relevant Information: Nutritional guidelines for maintaining eye health and managing ocular symptoms.
• Usage: Provided natural management strategies for eye health.
4. Mayo Clinic, Department of Ophthalmology.
• Source: Mayo Clinic's patient care resources and expert opinions on vision problems.
• Relevant Information: Symptoms and management of ptosis, diplopia, and ophthalmoplegia.
• Usage: Described the ocular symptoms associated with PP and natural management techniques.
5. Harvard Medical School, Harvard Health Publications.
• Source: Harvard Health's articles on eye health and nutrition.
• Relevant Information: Benefits of vitamins and minerals in supporting eye health.
• Usage: Supported the section on nutritional management of ocular symptoms.
6. University of California, Berkeley School of Optometry.
• Source: Berkeley Optometry's educational materials on eye exercises and their benefits.
• Relevant Information: Role of eye exercises in maintaining ocular muscle strength.
• Usage: Provided information on eye exercises for managing diplopia and ophthalmoplegia.
7. Cleveland Clinic, Cole Eye Institute.
• Source: Cole Eye Institute's patient education resources.
• Relevant Information: Management of light sensitivity and recovery from eye drops.
• Usage: Discussed the use of sunglasses and the impact of diagnostic drops on individuals with PP.
8. University of Michigan Kellogg Eye Center.
• Source: Kellogg Eye Center's research on ocular symptoms in systemic diseases.
• Relevant Information: Connection between systemic muscle disorders and eye movement issues.
• Usage: Explained how PP affects ocular muscles and vision.

By consulting these comprehensive and reputable sources, the article ensures accuracy and reliability while providing a thorough understanding of the impact of Periodic Paralysis on vision and eye health, along with natural management strategies.