The following links go to other web sites or e-mail contacts that may have useful
A natural history study about one patient with IBMPFD (VCP disease:, ALS14)
This link is to a pod cast 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): email@example.com 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:
Dr. Chris Weihl, Washington University (St. Louis): firstname.lastname@example.org 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:
Are Medicare Star Ratings Important When You Buy Health Insurance? https://www.medicareinsuranceaz.com/medicare-star-ratings/
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/
Ultimate Guide to Rehab & Medicare https://www.discoveryplace.info/rehab-medicare-ultimate-guide
The following links are for aging and how to deal with the varieties of problems:
Medical alert system reviews: https://www.consumersadvocate.org/medical-alerts
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/
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
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/
Alcohol Effects, Addiction Treatment, and Resources: https://www.addictiongroup.org/alcohol
Periodic Table of Substance Abuse Drugs http://www.detoxlocal.com/resources/periodic-table-drug-addiction/
Costs of rehab & treatment: https://www.drugrehabconnections.com/rehab-education/cost-of-treatment/
Prescription Medication Problems: https://www.drugrehab.com/addiction/prescription-drugs/
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/
Drug Rehabilitation (UK): https://www.uk-rehab.com/
Data base on prescription and over-the-counter drug issues: www.rxdangers.com
UK Addiction help: https://www.addictionhelper.com/
Help with addiction guide: https://knowyourdna.com/guides/can-a-dna-test-predict-addiction/
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
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/
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/
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.html
Facts 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: http//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/
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
Alzheimer’s (dementia), mental health, and their caregivers:
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/
Care Dos and Don'ts: Dealing With Dementia Behavior Problems
The following link is for a guide on remodeling for disabled access:
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/
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/
Fire Safety Reference Guide: https://www.homesecuritylist.com/fire-safety-disabilities/
Home Security Providers: https://www.allconnect.com/home-security
Senior Guidance (senior living assistance): https://www.seniorguidance.org/
Senior Living Help: https://www.seniorlivinghelp.co/
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/
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/
Common Online Scams Targeting Seniors – Tips To Protect You From Online Scams: https://consumer-champion.org/resources/common-scams-targeting-seniors/
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/
Best And Worst Bathroom Flooring For Aging In Place Safely
https://www.goodcall.com/home/guide-helping-senior-citizens-stay-safe-home-2/ includes a printable PDF version
A Senior's Guide to Using Computers and Software: A Senior’s Guide to Using Computers and Software
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
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
Assisted Living Homes: https://www.careagapeseniorhomes.com/
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/
Scams Protection: https://www.birchgold.com/scam-protection-resource-guide/
Sleep deprivation: https://www.nectarsleep.com/p/sleep-deprivation/
Sleep and PTSD guide: https://www.mattressadvisor.com/sleep-and-ptsd/
Breaking the cycle between anxiety and sleep loss: https://www.mattressadvisor.com/sleep-anxiety/
Coping with Insomnia After Loss: https://www.mattressadvisor.com/sleep-and-grief/
The article covers the many anxiety disorders people are affected by and provides details on symptoms, diagnosis and treatment for these conditions: https://sleepopolis.com/education/anxiety-preventing-sleep/
How to get Better Sleep (when recovering from addiction): https://www.nestmaven.com/sleep/disorders/addiction-recovery/
Treating eye conditions: https://www.visioncenter.org/eye-conditions/
Vision Center: https://www.visioncenter.org/
Color Blindness:: https://www.visioncenter.org/eye-conditions/color-blindness/
Animals for Support
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/
Visual, Hearing, and Speech Impairment Tools
Effects of Medications on Oral Health: https://www.newmouth.com/oral-health/effects/medications/
Effects of Drug Addiction on Oral Health: https://www.newmouth.com/oral-health/effects/drug-addiction/
The Young Adult’s Guide to Managing an Aging Parent’s Money: https://turbo.intuit.com/blog/relationships/managing-parents-money-5898/
Fraud/Scam Protection: https://www.birchgold.com/scam-protection-resource-guide/
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:
Potential cost that could be caused by tobacco use: https://www.fiscaltiger.com/what-is-the-true-cost-of-smoking/
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/
Ready to Quit Smoking: https://www.blacknote.com/ready-quit-smoking
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