This Letter to Please Be Tabled and Read in The House Of Commons, US Senate / House & British Parliament and Canadian Question Period ASAP. This Original Letter was written on November 14, 2012 My Father Passed away on November 16, 2012 and It has taken 2 years for me to finish this letter but here it is today.... I Promised My Dad on his death bed that I would do something Major for ALL those suffering around the world with #ALS / #Lou Gehrigs Disease / #MND, and that is exactly what I plan on doing !!! November 29, 2014 Dear Honorable Prime Minister Stephen Harper, British Prime Minister David Cameron, and The President Of The United States Of America Barack Obama, All Canadian MPs, All Members of the British Cabinet, and All Members of the White House / US Senate. My Name is Jason Laurance Mielke and I am the owner of a Production Company called ProjEX Unlimited Productions Inc. in addition to that I am also a Health and Safety Manager in the Oil and Gas Industry in Calgary / Edmonton / Ft. McMurray Alberta Canada. This Letter is in Honor and Memory of my Father Laurance Henry Mielke 1952-2012 an Amazing man who Loved Life and was so talented in so many areas, who worked as a Project Manager/Planner at Suncor Energy, a World-Class Gifted Musician/Saxophone, Entrepreneur, Business Owner, Inventor, Skilled Tradesman / Master of Every Trade, Gold Seal Electrician, Genius, Husband, Father, Cousin, Uncle, Brother, and was one month away from becoming a Grandfather to my sister Rachels First daughter Lauran. My Dad battled ALS in Leduc Alberta for over a year at Home with my Mom by his side in horrific conditions and never once did I ever hear one Complaint from my Dad Ever. I am writing this letter in HOPE that something can be done to HELP ALL THOSE PEOPLE who are Fighting and Battling this insidious disease #ALS / #Lou Gehrigs Disease / #MND daily 24/7. I am requesting a Very Urgent meeting between myself and MP / Minister of Health Hon. Miss Eve Adams in early 2015 to discuss what might be done to further Assist and HELP All Those who are suffering with ALS across the country and to get behind our National Tour and Documentary for ALS research. There are several key issues that while my father was fighting for his life two years ago needed to be addressed. Here are a few of the very important issues we encountered listed below: •Palliative Care / Hospice Care Do Not Accommodate Patients who need a By Pap Machine or Lung Volume Recruitment Machine, Severely Limiting Care Options for Patient and Family. •There is little to none Respite or 24 hour relief for family members and care givers to be relived for a day off in very high stressful circumstances, exhausting care 24/7 often no sleep all night long, then continuing on day after day no sleep caring 24/7 for loved one. Around the clock care needed from the Family. •(2012) Also, Why is there a hiring freeze on in Leduc Alberta Canada among Care Givers, FCSS, at a time when the demand is greater than ever and is only going to increase when all the baby boomers are starting to need special care and treatment in the very near future. - Maybe this freeze has come off since 2012 I am not sure where the status is currently at today. •There is a very severe shortage of Care Givers who can provide 24/7 Care and Support to ALS Patients and Families. •Hospitals and Hospice would not even take my Father as most of the facilities and hospitals are not even set up properly with the proper / necessary machines and equipment to help ALS Patients who desperately need help. - Something desperately needs to be done so that every hospital has the proper equipment to help an ALS Patient and Staff who are properly trained to run machines and equipment as well. •There is also a serious shortage of crucial medications administered to Patients suffering with ALS. (Routine Meds Used for Treating Palliative Care Patients.) •And Most importantly Not considering My Fathers Palliative Care Needs because he was still mobile barely at the time when he could hardly walk, talk, couldnt eat, breathe, gasping for every breath, muscle twitches, lost all his weight 100 lbs if that, no strength or energy , couldnt move arms, hot flashes all the time, could hardly speak, couldnt swallow choking on water, tons of pills daily, and morphine every 5 mins or less, feeding tube , breathing machine, by pap, the list was endless. The Health Care system seriously failed my Father in his time of need and was very hard for my Mom and all of us to watch. My Mom cared for my Dad for over a year and my sister lives in Regina and tried to fly up as much as possible to help my Dad, also my brother Derek works on the Rigs and is gone a lot but did as much as he could when he was home on his week off. I took time off my safety consulting job for 11 months to help and be by my Dads side as it was too much for my Mom to handle at times. •Not All Hospitals have LVR experience or knowledge or use or have a cough assist machine as well. More Machines are needed in the hospitals and more training on these machines are needed for staff as well. •Not all Hospitals / EMERGENCY Rooms know how to manage and care for ALS Patients and Neuron Muscular Patients in General. •There is also a major shortage of RTs / Caregivers, in Calgary and Edmonton and surrounding areas. Medication Shortage of : •Hydro-Morpheen, Nozinan, routine meds used for palliative care patients with ALS. •Denying my Dad the care he needed in Palliative Care because of shortages and •because my Dad was still not considered Palliative because he was still barely •mobile and could hardly breathe and was gasping for every breath. •On Average a Family easily gives up 250k – 500k a year in costs easy caring for someone with ALS, lost wages / jobs 2 people lost job revenue sometimes more family members, renovation costs to home, medication costs, special machines for ALS Patients, Special Meds, Diets, Alternate Treatments, Other ways for looking for a cure other expensive treatments, Extraction of lead fillings, Travel Expenses, Equipment for home, Making home accessible for wheel chair, the list is endless... Im sure I am also forgetting a few things here. •The government of CANADA in an earlier report suggested that the average family loses an average of 150k a year due to someone affected by ALS. THIS FIGURE IS WAY OFF AND COULDNT BE FURTHER FROM THE TRUTH AS SOMEONE WHO HAS PERSONALY EXPERIENCED THE LOSSES THIS FIGURE IS NOT EVEN CLOSE TO THE COSTS AND MONEY LOST WHEN A FAMILY MENMBER IS AFFECTED BY ALS. A Better estimate of the costs lost per family could start at easily 250k – 500k even more for certain households. •My Father visited the ER on more than one occasion and had to sit for 8 plus hours in the EMERG to see a Dr. This is Unacceptable these are brutal conditions with a normal healthy person to endure never mind someone with ALS and gasping for every breath to sit through. This has got to change, We are living in Canada not Ethiopia. •My Father stayed at home and suffered for over a year in horrific conditions with ALS, on the day he went to the hospital and checked himself in because he was in such serious critical condition my Dad passed away with me by his side not even 8 hours after he was admitted into that hospital in Leduc Alberta Canada. In Closing I would ask ALL of You to please support The 24 Hour HERO Tour and Documentary in 2015 / 2016 and HELP Make A Difference in the lives of others and ALL those suffering with ALS/ LOU GEHRIGS DISEASE / MND, I would ask that you would help me in assisting ALL THOSE people across Canada and Elsewhere who are fighting for their lives daily with ALS. Please HELP ME Give More Assistance to Those families who need HELP caring for their loved ones with ALS. Thank you so much. Best regards, Jason L. Mielke CC: Hon. Mr. Stephen Harper Prime Minister Of Canada British Prime Minister Mr. David Cameron President of The United States of America Mr. Barack Obama Hon. MP Miss. Eve Adams Hon. MP Mr. Jason Kenny Hon. Miss. Danielle Smith – Wild Rose Party Hon. Former Alberta Deputy Premier Mr. Thomas A. Lukaszuk Hon. Former Alberta Minister Of Justice Mr. Jonathan Denis Hon. Former Alberta Health Minister Mr. Fred Horne Hon. Current Alberta Health Minister Mr. Stephen Mandel Hon. MP Mr. Blake Richards Hon. MP Leona Aglukkaq Environment Minister Hon. Former Alberta Premier Allison Redford Hon. Former Minister of Seniors Mr. George VanderBurg Hon. Current Ministry of Seniors Mr Jeff Johnson Hon. Current Alberta Premier Jim Prentice Hon. ALL Other MPS in the House Of Commons Hon. All Members of the House and United States Senate Hon. All Members in the British Cabinet of the United Kingdom Dr. Janice Ricmmaneisenstat Ellen Degeneres – TV Host Project ALS New York ALS Canada ALS USA ALS Worldwide ALS / TDI MND – London ALS Emergency Treatment Fund Sharon Mielke Jason L. Mielke Derek Mielke Rachel Mielke
Posted on: Sun, 30 Nov 2014 21:25:58 +0000
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