A Martinsburg man and his mother battle Lou Gehrig’s disease.

By: Angela Cummings - Journal staff writer
POSTED: July 14, 2008


MARTINSBURG - Imagine being trapped inside your own body. In your mind you are completely cognizant and aware of what it is you want to do and say, but your body simply won't move the way you wish it to.

Being able to say something as simple as "I'm thirsty" or do something that is pure instinct - like feed ourselves - is something most people take for granted, but if you have Amyotrophic Lateral Sclerosis - also known as Lou Gehrig's disease- such simple things aren't only difficult, but impossible.

For Robert Sims, 40, this is his reality.

Sims says lack of strength in his hands was the first sign he noticed, and when he knew something wasn't quite right. Then he had an episode where he lost his grip because of muscle weakness and fell off a ladder while working. Prior to his diagnosis of ALS, Sims was a welder who specialized in ironwork.

Sims was diagnosed with ALS in March 2006. His mother, Ann Moats, says he was actually still driving a car up until last year, but his muscles have deteriorated greatly since then.

During the interview, Moats acted as an interpreter for her son, who has much difficulty communicating. Moats also says that Hospice is in the process of obtaining a special communication device for him since his speech is so difficult to understand.

Sims says that he does not experience any pain at this time, but he's been told that eventually his muscles will atrophy and his whole body will draw up into the fetal position and freeze. He says once his body draws up it will be similar to a full-body "Charley horse" and the pain will be so great, he will need to receive morphine.

Although no one knows when Sims will reach this final stage of the disease, Moats says the next phase for Sims is a trachea tube and a feeding tube. Right now Sims is not experiencing difficulty breathing, but it is inevitable that he will and he will get to the point where constant oxygen being forced into his lungs will be needed. He now uses a neck brace to aid in holding his head up because his neck muscles have become so weak and keeps his airway unrestricted. Moats also says she is trying to keep him on regular table foods as long as possible, but because he has difficulty manipulating the muscle of his tongue to chew his food, it takes him anywhere from two to three hours to eat a meal.

Other than the loss of muscle function, Sims is usually in good health with one exception. Moats says that in January he was hospitalized for four days with pneumonia and blood clots in both lungs.

Moats is not only Sims' mother, but also his primary caregiver. Surprisingly, she manages to take care of her son during the day while working nights for the U.S. Internal Revenue Service as a computer operator. Moats says the only support she gets is from Hospice, West Central Home Care - a part-time nursing service which comes into Sims' apartment to assess and helps him Monday through Friday for five hours - and her sister who stays with Sims while she works at night.

Although there is a national ALS Association, there is no local chapter anywhere in West Virginia.

"They should have some type of support group around here," Moats says. With verbal communication being difficult and bodies being weary, Moats says oftentimes she and Sims become very frustrated.

"When he gives it to me, I give it right back to him though," she says.

Moats says a usual day for Sims is pretty standard. She helps him get up in the morning, perform his personal hygiene routine, get dressed and eat breakfast. Then he'll usually spend a few hours in the afternoon visiting with friends which gives her time to take care of household business - like pay bills, go grocery shopping, etc. When he returns home, she then feeds him dinner and helps him get dressed for bed. Once he's in bed and her sister arrives, she then gets ready to go to work.

The good news is at this point in time, Sims is still able to operate his motorized wheelchair on his own. Moats says this allows him to still have some sort of independence. He can often be seen "driving" himself around the neighborhood.

Moats says upon diagnosis, Sims' neurologist gave them the prognosis that he would have anywhere from 14 months to two years to live. She says this past March marked the two years. From this point on his decline is expected to be very rapid.

Moats says the only income Sims has is his Social Security he gets from the government. With she and him both living on fixed incomes, it's difficult to make ends meet, much less save money for funeral expenses.

On May 10, the Hagerstown Country Western Dance Association of which Moats is a member, hosted a fundraiser event to help Sims and Moats pay for funeral expenses. With tears welling up in her eyes, Moats says, "They (the HCWDA) has two fundraisers a year. I had no idea they were going to do that for us until they announced it. They raised $2,368. They're like family."

However, according to the National Funeral Director's Association Web site as of July 2004. the average cost for funeral expenses, not including a plot, is $6,500.

Moats says that one of Sims' Hospice nurses is planning a fundraiser event with her and her husband's motorcycle group, but the date has not yet been determined.

And currently a local chiropractor, Dr. Will McCray, D.C., is offering a special in which contributions will go into a fund to help pay for Sims' funeral expenses. Any new patient to McCray's office will be charged a $29 exam fee which will go toward Sims' fund. Also, established patients can pay a $29 fee which can go to Sims' fund as well.

- Staff writer Angela Cummings can be reached at (304) 263-8931 ext. 135, or acummings@journal-news.net.

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