Neuromuscular disease by its very nature means loss.

As muscle tissue degenerates, whether quickly or over decades, people undergo a series of physical losses. These may include strength and balance, the ability to walk, manual ability, breathing without mechanical help and more.

You may also have lifestyle losses: reduced work hours, an inability to live alone, a need for more help with daily care. Disability can bring interpersonal losses as relationships end or caregiving parents age and die. For each individual, the losses caused by a progressive neuromuscular disease can be very specific: from the move out of a beloved home to having to stop driving, give up golf or lay down your guitar.

We grieve after any significant loss: divorce, loss of a job, death of a pet, absence of friends, loss of ability and independence. Even positive changes, such as retirement or marriage, involve some loss. You may not identify your feelings about the losses associated with progressive disease as grief. You may have anticipated changes ahead of time and adjusted your life accordingly, with a minimum of obvious emotion. But, even when changes seem to go smoothly, every major loss has an impact. A loss caused by neuromuscular disease can be like losing a part of yourself or your identity. You may feel you no longer know who you are; to survive, you'll need to redefine yourself.

That redefinition is accomplished by grieving - acknowledging and experiencing whatever emotions arise. Completing the grief process allows you to shift priorities and focus on different aspects of yourself. And with that shift, loss can bring gain - a new way to see yourself and your place in the world.

GRIEVING: WHY AND HOW

Why do mental health experts believe it's necessary to grieve each significant loss in life?

Libby Coker, a senior social worker at Methodist Hospital in Houston who works with the MDA clinic there, says the first reason is "to acknowledge what that loss meant to you or what that functional level meant to you, what that job meant to you, what your health meant to you."

In Letting Go, the late Morrie Schwartz writes, "I see mourning as a way of paying respect to life."

Second, when people resist grief by trying to squelch their feelings, it may come out in other ways, such as physical illness - ulcers, depression or an overtaxed immune system, Coker says.

Third, grieving helps you to learn better coping skills, appreciate life and achieve growth. Or, as Schwartz, who had ALS, writes, "Having paid my respects through grieving, I can stop brooding over the things I've been deprived of and feel grateful for what I have - people who help me and family and friends whose love I cherish."

The fourth reason Coker cites for healthy grieving: "A person who works through it effectively can also be a major resource to other people who in the future will go through this."

How do you come to terms with your losses in such a way that you could actually help others through their grief?

There's no formula that works for everyone. Many people make healthy adjustments without realizing there's grief involved. For others, the emotions are powerful and sometimes surprising.

If you feel you may be "stuck" or burdened with an unproductive degree of unacknowledged grief, or emotions that won't let you go, some of the following suggestions may help.

1.   ADMIT THAT YOU'RE EXPERIENCING LOSS

In neuromuscular diseases, people know they'll lose some abilities. But knowing ahead of time doesn't protect you from feelings of grief when the loss occurs.

Rather than anticipate their loss, some people indulge in denial - believing that their case will be different, that it won't progress as rapidly as with others, ignoring signs that their abilities are changing.

Coker says, "Once you break through that denial and the shock and you start accepting it, it doesn't mean it's not difficult when those milestones start happening. But maybe you're a little bit more prepared for them and maybe, by that time, you're connected with some people who are like you." If you feel little or nothing when loss occurs, be sure you're not fooling yourself. Watch for physical illnesses, a short temper, a sense of resignation or lingering lethargy - all signs that you're fighting the grief.

The idea of letting strong emotions "out" is frightening to some people. But those who grieve openly find the intensity is only temporary and the emotion is soon spent. Then they can move on, free of the feelings that others are holding in.

2.   RECOGNIZE EMOTIONS THAT INDICATE GRIEF

Many people think grief means sadness, but other emotions, such as anger, may also be triggered by loss. It may help to examine your past and try to identify the emotion that dominates when you face loss.

In the early 1980s, Wayne Marlatt's limb-girdle muscular dystrophy (LGMD) was causing some problems at work. His employer - before the Americans with Disabilities Act - insisted he leave the job and go on disability. With a wife and two children to support, Marlatt, of Dearborn, Mich., faced this loss with fear.

"If I forced them to take me back and they gave me a job that I couldn't do, then I would get fired and have nothing. This way I had the disability and I had health care coverage," he says.

Marlatt decided not to fight the company. But, faced with the possibility of never working again, he worried: "How are we going to raise our kids? Are the kids going to be able to get to college? All those earthshaking things came."

Over more than 40 years of living with LGMD, Betty Jane Lindsey of Annapolis, Md., found that she experienced depression as a signal that a loss was occurring.

"I noticed I would start having feelings of depression. Then I would think about it and it was usually an unconscious reaction to an added limitation," she says. "In other words, I wasn't consciously aware that I had lost some ground. But I would become aware of the depression, and I'd realize it was telling me something."

3.   LET YOURSELF FEEL YOUR EMOTIONS, WHATEVER THEY ARE

Whatever emotional form your grief takes, it's probably best to give into it for a while, in a safe and healthy way. Your sorrow, rage, wish to withdraw from life or other feeling can serve a purpose, then make way for new feelings that will help you cope.

After his Charcot-Marie-Tooth disease (CMT) progressed to making walking difficult, Bill Quesinberry of Denver got tired of dealing with people's stares and answering questions. At first, he "hid out at home."

"It was becoming so difficult to get around that it just wasn't worth the effort," he says of a period about three years ago. "I got tired of people coming up to me and asking if they could help me - because I couldn't figure out what they could help me with. I just got tired of dealing with people looking at me, so it was easier to stay home and avoid them."

His withdrawal was short-lived. During that time of protecting himself from others, he reflected on his situation and, drawing on a lifelong well of self-confidence, developed a new attitude. AFOs and a scooter helped him get around with less difficulty.

"I just decided that I have a great life now. I live in a gorgeous place with gorgeous views. I go to the theater, we go out to dinner. I love the volunteer work I do," Quesinberry, 64, says. "I just decided, I never cared what they thought before. Why should I care now? I realize that people can react to me, and that's fine."

Ramona Hopkins learned in 1986 that she had CMT, after experiencing muscle weakness since childhood. She'd enjoyed bicycling, swimming, softball, hiking and camping, but eventually had to give up each of these activities.

"A couple of years ago, I said, you know, my whole life has been a giveaway, I've had to give that away, I've had to give this away, going through kind of a range of things," she says.

For Hopkins, who lives in Charlotte, N.C., loss isn't always a literal loss of ability. Her CMT can bring on extreme fatigue or muscle pain in response to physical exertion such as walking. "It's a real psychological adjustment to know that you can do this or you can do that - you can do anything you want to if you're willing to pay the price for it."

For example, "I've had to consciously struggle to not swim when I get in the water. I float. I can get out in the water, I can kind of bop along a little bit to get that weightless feeling, which feels good to the muscles. But I've learned consciously not to swim. Don't kick your feet, don't move your arms.

"If I'm going to enjoy being in the water, which is something that I truly enjoy, this is the only way you are going to be able to do it."

In 1998, she became unable to walk because of a spinal disk problem, which led to bone fusion surgery. The pain was largely relieved, but during the months of recovery, she experienced more muscle deterioration. "I didn't know what else I could give up except for my job," she says. "I had this horrible, horrible feeling of helplessness and hopelessness. I had never gone through those feelings before. I had no clue how to deal with it."

Hopkins, 48, saw a psychotherapist who advised her to keep a journal. At all hours, Hopkins would write her thoughts and feelings, never rereading or editing, just getting the thoughts out in words. The experience was eye-opening.

"It wasn't just fear and the hopelessness and helplessness I was feeling from my physical condition," Hopkins says. "It was every emotion I think had bottled up in my brain for one reason or another for years." In her writing, she described fears and other emotions going back to age 4. "Sometimes I would be so mad and angry that I would just be pounding on that keyboard and my head would hurt and my fingers would hurt. Other times I would just be sobbing, other times I would be laughing, other times it would be so automatic you would think I was sleep walking."

After a few months, Hopkins felt she'd worked through most of the pent-up emotions of her life, and was ready to face the new crisis in her physical ability.

"I wasn't going to be able to work, but I had gotten a lot of things worked out. I had gotten past that what-am-I-going-to-do into the this-is-what-I'm-going-to-do stage."

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