Mon | Dec 18, 2017

Not defeated by ALS

Published:Monday | September 1, 2014 | 12:00 AM
Anita Pelchat, ever by her husband Ronald Pelchat's side, with hand around grandchild Collin Milligan. -Contributed Photos
It is a family affair. Ronald Pelchat surrounded by niece Johanna Farlow (left), Marco Farlow (right) and his beloved wife, Anita.
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Jody-Ann Lawrence, Staff Reporter

Six years ago, swimming was something that Ronald Pelchat enjoyed doing, but now neither his arms nor legs move voluntarily. Since his body has been stricken with amyotrophic lateral sclerosis (ALS) disease, he has had to readjust to a whole new life.

It cannot be a thrilling experience knowing that you don't have long to live, but Pelchat has not made his death sentence an excuse to stop living. The way he looks at it, several persons have died unexpectedly in the last five years, so he has no intention to let being stricken with ALS be a burden to him. He is trying his best to make the most of the time he has with his beloved wife Anita, who has supported him all the way.

"I've lasted five years, have a wonderful support system, communicate fully with my speech generating device, and I am somewhat independent with my power wheelchair, operated by a head array," said Pelchat, who lives in New Hampshire, United States, with his family.

He happily declared that he and Anita recently celebrated their 30th anniversary and he intends to live a fulfilling life with her until he passes.

life-changing

The winter of 2008 was when the life-changing event started for Pelchat, beginning with weakness in his left hand. Seeing that it was not quite "bothersome", as he describes it, he did not take it too seriously. At first, he thought that it was a pinched nerve, but he was wrong. He was diagnosed with ALS, a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. Naturally, Pelchat was overwhelmed when he heard the diagnosis.

"I was fearful, overcome with lots of emotions, which included anger. I had to come up with a life-ending strategy. When your diagnosis is two to five years to live, it's a shock. I planned my funeral, got my insurance in order, applied for disability and shared many emotional moments with family," said Pelchat.

Nonetheless, he was determined to fight for as long as he could and did some research on how he could preserve his life.

Over the years, his body began to slow down until he was unable to use his limbs. It started with him tripping and feeling cramps in his legs as he recalled, until walking felt like climbing Mount Everest.

"Lack of hand function meant special utensils to eat, use of a walking stick, then a walker, to a portable wheelchair. I still had some use of my right arm, so I typed with one hand or used Dragon talk-to-type," he said.

The disease progressed to the point where he needed a motorised wheelchair. He soon lost his speech and then just only nine months ago he went on to do a tracheotomy surgical procedure to insert a breathing tube, as well as a feeding tube.

Pelchat currently only has muscle functions in his neck which he sees as fortunate because this allows him to use a voice-operated system to speak.

He feels robbed of many things outside of the loss of his muscles, which includes general conversations with friends. However, he believes that ALS has also robbed his wife Anita.

"My wife is robbed of an equal life partner and of 'our time'. Physically, it's hard for her. She tugs, pushes, lifts, feeds, dresses, undresses, bathes and wipes me. She's the real hero," Pelchat told Flair.

still active

ALS has not stopped Pelchat from working and being a part of the lives of his four children and four grandchildren, going out often with the family.

What is remarkable is how open he is about his illness. He has taken his ailment and made it into a lesson, creating his own website which is an aid for family members and people who suffer from ALS. The informative website tells of his experience as well as what people may need to cope with the illness.

Pelchat, though fighting the fight of his life, will not have any regrets if tomorrow is his last day, as he believes that he has lived a full life.

"I'm 56 years old, and hope to live a productive life as long as possible. If I was 25, 35, 40 my outlook may be different. But all the big responsibilities have been met. I've lived a respectful life, no skeletons and no bucket list. I'm at peace," declared the high-spirited gentleman.