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The following links go to other web sites or e-mail contacts that may have useful
information:
This link is to a podcast from KUCI radio program "Ask a Leader" on 3 February 2015, hosted by Claudia Shambaugh, containing several interviews, primarily with Dr. Virginia Kimonis:
The Muscular Dystrophy Association is a prime place to locate information for a variety of issues regarding neuro-muscular disorders.
NIH (National Institute of Health) provides some information at The hIBM/ARM web site contains information about a similar mutation, with similar symptoms to IBMPFD. The http://www.1800wheelchair.ca/news/post/muscular-dystrophy-information.aspx contains information about various inherited "muscular dystrophies" (not including IBMPFD), with links to various other sources of information. The 215th ENMC International Workshop produced a lay person report on the meeting and intended actions. The World Community Grid allows you to donate your idle computer time to create the largest volunteer computing grid benefiting humanity. I have been participating, with no problems, for the Help Cure Muscular Dystrophy project, which may have some research benefits for IBMPFD. Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations. To Eliminate the Challenges of Rare Disease, we build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease. There are a number of universities that are performing research into various genetic diseases, as well as the basics of what and how DNA works. In some cases, one can participate in the research, e.g., provide DNA, muscle samples, which helps facilitate the research. Go to the research page for more information. Dr. Virginia Kimonis, University of California (Irvine): vkimonis@uci.edu The web site for Dr. Kimonis is: http://www.ucihs.uci.edu/pediatrics/drkimonis/index.shtml Drs. Kimonis and Watts have posted a paper that is a very comprehensive overview of IBMPFD: https://www.genetests.org/search/search.php?search=ibmpfd&submit=Search&start=0 Dr. Chris Weihl, Washington University (St. Louis): weihlc@neuro.wustl.edu The associated web site is http://www.neuro.wustl.edu/neuromuscular/index.html A link to the NEUROMUSCULAR DISEASE CENTER at Washington University, St. Louis, MO USA The University of California, Davis is doing research I had a brain MRI performed at UK regarding the frontotemporal dementia aspect; UC Davis performed some checks on my heart. The following link ranks and rates the 50 states for topics such as community accessibility, economic independence, access to specialized healthcare, independent home living, and availability of disability benefits. http://www.rankings.com/best-states-disabilities/ The following links are to sites on the web that contain educational information. In many cases the initial link will connect to other sites that contain additional information. The Structure of DNA Watson & Crick http://www.jamesbootcamp.com/articles/an-overview-of-dna.html A nice overview of DNA and associated structures, mechanisms, and engineering. http://molvis.sdsc.edu/dna/index.htm An animated tutorial (high school level) on DNA structure. http://www.biology.arizona.edu/biochemistry/activities/DNA/DNA_intro.html An introductory to DNA structure part of an introductory biology course. http://www.johnkyrk.com/DNAanatomy.html An animated outline of DNA structure. http://www.accessexcellence.org/RC/VL/GG/structure.html An illustration of the double helical structure of the DNA molecule. http://www.russell.embl.de/aas/ A description of amino acid properties. http://web.indstate.edu/thcme/mwking/amino-acids.html A description chemical nature of amino acids with some illustration amino acid properties and functions. http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=167320 The OnLine Mendelian Inheritance in Man data base from John Hopkins University for IBMPFD. http://genetests.org/ A publicly funded (NIH) medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons. The following links contain information regarding Paget's Disease of Bone: http://arthritis.about.com/od/pagets/Pagets_Disease_of_Bone_Cause_Diagnosis_Symptoms_Treament.htm; http://adam.about.com/encyclopedia/infectiousdiseases/Pagets-disease.htm; http://arthritis.about.com/od/pagets/p/paget.htm. The following links are for aging and how to deal with the varieties of problems: Medical alert systems: http://backgroundchecks.org/home-security/medical-alert-systems; https://www.alarms.org/guides-medical-alert-system/ Medical alert system reviews: https://www.reviews.com/research/senior-friendly-guide-medical-alert-systems/ Summary of drug side effects, recalls, alerts, health info: https://www.recallreport.org/ Assistance for the disabled with mental health issues: http://sunrisehouse.com/addiction-demographics/physically-disabled/
Understanding Social Security Disability and a benefits calculator http://www.thesimpledollar.com/disability-benefits-guide/
Guide to Disability Claims, Insurance, and Benefits: www.disabilitydenials.com/guide-to-disability-claims/
The Boomer’s Roadmap for Aging in Place: How to Prepare Today for your Senior Years: https://www.homecity.com/how-to-prepare-for-senior-years 9 Ways to Prevent Falling at Home: http://www.everydayhealth.com/longevity/future-planning/prevent-falls-at-home.aspx Dealing with dementia (Alzheimer's): http://www.seniorlivingspecialists.com/alzheimers-dementia-care/guide-caring-loved-one-alzheimers-disease/ The Benefits of Cooking with Alzheimer’s: A Caregiver’s Guide: http://www.culinaryschools.org/blog/cooking-with-alzheimers/ Fire Safety Reference Guide: https://www.homesecuritylist.com/fire-safety-disabilities/ Cats and Seniors http://www.americanhumane.org/animals/adoption-pet-care/cat-behavior/cats-and-seniors.html Canine Caregivers for Alzheimer’s and Dementia Patients https://www.rover.com/canine-caregivers-dementia-alzheimers/ Pets for the Elderly Foundation http://www.petsfortheelderly.org/ Older Adults & Anxiety http://www.adaa.org/living-with-anxiety/older-adults A guide explaining the link between anxiety and addiction: http://oceanrecoverycentre.com/mental-health/anxiety-and-addiction-guide/ Heart Attack Quiz https://www.acls.net/heart-attack.htm Alcohol Rehab and Recovery https://alcorehab.org/ Alcohol Treatment: https://www.alcoholtreatment.net/ Alcohol Addiction Treatment: https://www.rehab4alcoholism.com/ Periodic Table of Substance Abuse Drugs http://www.detoxlocal.com/resources/periodic-table-drug-addiction/ Substance Addiction Rehabilitation https://www.drugrehab.com/support/ https://www.drugrehabconnections.com/ Drug Rehabilitation (UK): https://www.uk-rehab.com/ Costs of rehab & treatment: https://www.drugrehabconnections.com/rehab-education/cost-of-treatment/ Prescription Medication Problems: https://www.drugrehab.com/addiction/prescription-drugs/ Prescription Drug Abuse & Addiction: https://www.therecoveryvillage.com/prescription-drug-addiction/ Addiction Rehabilitation for the Deaf/Blind: http://www.rehabcenter.net/rehab-for-deaf-and-blind/ Warning Signs of Prescription Drug Abuse: http://www.drugrehab.org/the-45-warning-signs-of-prescription-drug-abuse/ How to get Better Sleep (when recovering from addiction): https://www.nestmaven.com/sleep/disorders/addiction-recovery/ Data base on prescription and over-the-counter drug issues: www.rxdangers.com UK Addiction help: https://www.addictionhelper.com/ Program costs, how to pay for care including insurance options: https://www.thesimpledollar.com/financial-wellness/how-to-pay-for-addiction-treatment/ Information of medications and medical devices with serious complications: www.drugdangers.com Source of information for persons seeking treatment facilities: https://findtreatment.samhsa.gov/ Information of medical and consumer safety issues: www.consumerdangers.com Ultimate Guide to Rehab & Medicare https://www.discoveryplace.info/rehab-medicare-ultimate-guide Assisted Living Regulation and Laws http://www.alfa.org/alfa/ALFA_in_Your_State.asp Senior Guidance (senior living assistance): https://www.seniorguidance.org/ Business Ideas For People With Disabilities: https://www.commercialcapitaltraining.com/business-resources/business-ideas/business-ideas-people-disabilities/ Learn about what the meaning to age in place and how planning now, regardless of your age: http://ageinplace.com/ Insomnia and other sleep disorders: Depression and Sleep Disorders Anxiety’s Effects On Sleep Cognitive Behavioral Therapy for Insomnia Sleep deprivation: https://www.nectarsleep.com/p/sleep-deprivation/ Simplifying online shopping for people with disabilities: https://wikibuy.com/blog/online-shopping-for-consumers-with-disabilities-f45fffeeb5c2 Consumer Safety Guide (equipment, food, supplements, etc.): https://www.consumersafetyguide.com/ Toilet Reviews: http://toiletadvisors.com/ Reviews and Tips for Using Tools: http://www.toolversed.com/ Sewing Machine Buyer's Guide: http://www.sewingauthority.com/ Manual wheelchair Reviews: https://thoroughlyreviewed.com/health-beauty/best-wheel-chair/ Mattress and Bedding Guide for People with Disabilities: https://www.bestmattressreviews.com/mattress-and-bedding-guide-disabilities/ Bed Sheets Reviews: http://bedsheetadvisor.com/ Stop Fraud http://www.stopfraud.gov/protect-yourself.html How to Prevent Credit Card Fraud National Center on Elder Abuse: https://ncea.acl.gov/ Guide to Taking Legal Action for Elder Abuse in Nursing Homes http://www.injuryclaimcoach.com/elder-abuse.htmlFacts about Elder Abuse and Nursing Homes http://www.nursinghomeabuseguide.org/ There is also information about bedsores, which can occur at home. Elder Financial Abuse Guide: https://www.medicaresupplement.com/content/elder-financial-abuse Nursing Home Abuse Hotline: www.nursinghomeabusesupport.com An in-depth report on how to build the best diet for your heart's health. http://umm.edu/health/medical/reports/articles/hearthealthy-diet The 20 best heart disease calculators http://www.calculators.org/health/heart.php Exercise for Your Heart Health http://my.clevelandclinic.org/services/heart/prevention/exercise/exercise-for-your-heart-health Alternative Medicine for Heart Disease http://www.everydayhealth.com/alternative-health/treatment-regimens/heart-health-and-alternative-therapies.aspx Exercise is important, but injuries (especially when older and IBMPFD weakened) can be more serious than normal: Sports Injuries Gardening for Beginners: http://www.the10thcircle.com/gardening-for-beginners/ Housing Tips and Advice from The National Aging in Place Council Home Security Providers: https://www.allconnect.com/home-security Fall
Prevention: The
Complete Guide to Home Modifications to Prevent Falls Fire Safety: http://householdquotes.co.uk/keep-safe-from-fire/
Causes and Risk Factors For Falls In Older Adults at
NIHSeniorHealth.gov http://www.expertise.com/home-and-garden/home-remodeling-for-disability-and-special-needs 25 Tips To Make Home Safe For Seniors (Especially Those Living Independently) Home Modification Programs for Aging in Place Home Services Aging in Place Home Loan Modification Programs The Fully Accessible Guide to Home Loans for People with Disabilities: https://www.thesimpledollar.com/home-ownership-for-people-with-disabilities/ Home Ownership for People With Disabilities: https://lendedu.com/blog/home-ownership-for-people-with-disabilties/ https://www.stairliftsreviews.co.uk/dementia/ Home Modifications for seniors and/or disabled: https://www.reviews.com/blog/home-modifications Home Modifications for Seniors and People With Disabilities: https://www.reviews.com/blog/home-modifications/ For Seniors NIH Senior Health http://nihseniorhealth.gov/talkingwithyourdoctor/planningyourdoctorvisit/01.html Health for Seniors https://www.usa.gov/health 22 Senior Health Risk Calculators for Healthy Aging http://www.calculators.org/health/aging.php Information and Resources for Seniors: https://safestars.org/senior-resources/ Moving: Moving Tips for Seniors and People With Disabilities Discounts for Seniors: http://comparitech.net/seniors-discounts A Senior’s Guide to Healthy Eating: https://niftybenefits.com/seniors-guide-healthy-eating/ Senior Emergency Preparedness: https://www.nursinghomelawcenter.org/news/nursing-home-abuse/senior-emergency-preparedness/ The Complete Resource Guide for Sewing: https://www.sewingauthority.com/the-complete-resource-guide-for-sewing/ Fraud Prevention Checklist for Seniors Making the Move to Assisted Living Keeping Seniors Safe with While Remodeling Disaster Preparedness for Seniors Home Accommodations for Seniors Aging Veteran's Guide to Planning for the Future Tips for Seniors to Declutter and Organize their Home Seniors with substance abuse problems: http://forterustreatment.com/seniors-and-addiction/ Seniors suffering from addiction: https://www.denverrecoverycenter.com/help-for-seniors-struggling-with-addiction/ What is Elder Abuse and Elder Abuse Reporting? The Senior's Guide To Staying Safe Online and On Social Media
The
Best And Worst Bathroom Flooring For Aging In Place Safely Fall Prevention Tips for Seniors | A Home Design Guide https://www.goodcall.com/home/guide-helping-senior-citizens-stay-safe-home-2/ includes a printable PDF version Exercise & Physical Activity: Your Everyday Guide from the National Institute on Aging A Senior's Guide to Using Computers and Software: A Senior’s Guide to Using Computers and Software Economic Security for Seniors Facts Home Safety and Security for Aging-in-Place Seniors Fire Safety Resources for the Disabled and Seniors Health for Seniors Older Adults & Anxiety Ultimate Guide to Rehab & Medicare Seasonal Affective Disorder and Sleep The Link Between Anxiety and Sleep Disorders How Mental Health Affects Sleep Senior-Friendly Home Remodeling http://www.homeadvisor.com/article.show.Senior-Friendly-Remodeling.8317.html 14 Ways to Help Seniors Avoid Isolation: http://www.aplaceformom.com/blog/help-seniors-avoid-social-isolation-8-14-2014/ Guide to Senior Safety at Home: https://www.alarms.org/guide-to-senior-safety-at-home/ Home Safety and Security for Aging-in-Place Seniors: http://www.securitygem.com/home-safety-for-seniors/ Seniors & Drugs - NCADD Mental & Physical Wellness in a Nursing Home Moving Advice for Seniors and People with Disabilities: https://www.sparefoot.com/self-storage/blog/19898-moving-advice-for-seniors-and-people-with-disabilities/ Rental Housing Rights for Disabled Tenants: http://civilrights.findlaw.com/discrimination/rental-housing-rights-for-disabled-tenants.html The Internet Low Vision Society: http://www.lowvision.org/introduction_to_the_low_vision_g.htm Home Solutions to Cope with Sensory Processing Issues and Sensitivities: http://www.airfiltersdelivered.com/sensory-processing-disorder Environmental Illness Resources: https://www.cleanerindoorair.org/ Keeping Seniors and Special Needs Individuals Safe Around Construction: Senior Home Improvement Assistance: https://eldercare.acl.gov/Public/Resources/Factsheets/Home_Modifications.aspx When to Move to Assisted Living: https://www.homecity.com/making-the-move-to-assisted-living Guide for Finding Credible Medical Information and Advice: https://online.arbor.edu/blog/guide-finding-credible-medical-information-advice/ Financing senior care costs: https://www.bankrate.com/funnel/personal-loans/#senior-care Consumer Safety Guide: https://www.consumersafetyguide.com/ Quit Smoking I have been opposed to smoking since the late 1950's, so some people take my stance on anti-smoking less seriously. Nevertheless, the data is more than sufficient to demonstrate the harmful effects on smoking and second-hand smoke, especially for those of us with IBMPFD (the mutation effects also cause problems with breathing). The following websites provide some help for those who want to quit: Freedom From Smoking® Online, or FFS Online, is a program specifically designed for adults who want to quit smoking. http://www.ffsonline.org/ Quit Smoking for Good — The Best Quit Smoking Guide https://quitday.org/quit-smoking/ How to Quit Smoking https://quitsmokingcommunity.org/ How & Why to Quit Smoking: https://tobaccofreelife.org How to Quit Smoking - Ultimate Guide (scroll past ads): https://www.jenreviews.com/how-to-quit-smoking/ Concerns with Vaping: https://vapingdaily.com/health/ https://mesothelioma.net/mesothelioma-asbestos-dangers-smoking/ Ready to Quit Smoking: https://www.blacknote.com/ready-quit-smoking Possible Alternatives that Could Help Mesothelioma Treatment Community of TreatMesothelioma.org is dedicated to the assistance and guidance of asbestos and mesothelioma victims around the world. We exist to not only inspire hope during these unbearable times but to also provide palliative care and comprehensive information through our website, resources, and educational videos. By being the largest resource for mesothelioma treatment options and complementary therapies for cancer, we are designed to help guide patients and their loved ones toward the answers and support they need to improve their quality of life, prognosis, and life expectancy. CBD products may help with anxiety and other conditions: https://cbdoilsandedibles.com/cbd-for-anxiety/ for additional information visit: https://cbdoilsandedibles.com/
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