Archive for the ‘A New Life with ALS’ Category

I used to shy away from situations that dealt with difficult human emotions. Funerals were not attended and words of encouragement were left unsaid for fear of saying the wrong thing.
The Bishops

After being diagnosed with ALS, I realized that it didn’t matter what people said. The fact that anything was said at all meant that someone cared. It was a lesson never to be forgotten.

Some of our friends were apprehensive about asking questions about ALS and my condition so we decided to disarm that immediately. When Jennifer and I informed people of my health, we’d immediately add, “There are no stupid questions you could ask or comments you could make that would bother us. Thank you for caring.” The gift of open dialog was given to both parties without any awkward moments.

Gallows or dark humor has become a weapon we use quite often against ALS. With the open relationships we’ve developed around ALS, we’re able to use this weapon without offending or shocking … in most cases.

Getting Started …

My slow progression is an incredible blessing but a bit of a tease. I still find myself with enough strength or energy to start many things. My body allows me to begin, whether it’s cleaning out the garage, wrestling with Christopher or running errands with Jennifer.

Then comes the point of complete exhaustion and fatigue. It is almost like hitting a brick wall, and I feel I can’t take another step or lift a feather. This is extremely frustrating for someone who prides himself on completing the job.

I know that many of my comrades with ALS can relate and some are unable to even start projects or have playtime with children, grandchildren or pets.

My personal challenge will be to keep my positive attitude when my physical capabilities deteriorate even further. I’m confident this will be accomplished through my personal determination and network of support. No matter what stage of this illness I am in, reaching out to others will remain extremely valuable. I know I have much to learn about life and coping with the march of ALS’s attack, but my mental attitude is my biggest ally.

ALS as a Gift

The following paragraph is how I summed up my perspective to an audience of about 300 people at an MDA ALS gala Jennifer and I hosted in Denver recently, where we helped raise approximately $54,000 for MDA’s ALS research program:

“I am not guaranteed tomorrow. No one is. Once I was aware of that fact, my outlook on life focused to the present. I am busy trying to create memories of today that can be enjoyed as part of the past but not lamented. Tomorrow is still to be planned for but not obsessed over.

“ALS has been a gift of perspective to me. Some of us who have experienced ALS may not feel that we’ve been given a gift and rightfully so. It may be difficult to think of a gift as having your body’s complex biological wiring slowly disconnected until you can no longer move. Meanwhile, the mental capacities remain as vibrant as ever, if not more so.

“I have no blame for this disease. It is what it is and what I make of it. My legacy will be how I handled an insidious attack on my being and then used it to launch a mental assault on the disease. That legacy may begin tomorrow, but does anyone really know?”

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After emphasizing the importance of support groups in last month’s column, we thought it appropriate to expand upon other aspects of support in our lives. The idea of accepting help isn’t comfortable for us and the prospect of asking for it is even more difficult.

Many of you who are facing ALS may at first resist the idea of asking for help, as we did. But we’ve found, through the thoughtfulness of an incredible network of friends and family, that people want and need to help others, including us.

People feel helpless when they see another hurting and are unable to assist them. After our diagnosis, countless people asked what they could do to help. Physically, because there weren’t a lot of immediate changes, we didn’t have a lot of requests for them.

We decided to move from our two-story house into a ranch-style, single-level home before we had to do it for the preservation of Steven’s leg muscles. The prospect of moving is never a fun one, but we were overwhelmed when some of Steven’s former co-workers from Sprint Communications coordinated with Graebel Van Lines to donate a moving package that included the laborious task of packing. We enthusiastically said yes to help in this form — and those who put this gift together seemed to get genuine pleasure in doing so.

On a person-to-person level it’s a little different, and we’re still learning. People in our network would offer to help in many aspects of our daily life. At first, we felt like we didn’t want to inconvenience anyone by accepting.

What we didn’t realize is the power of letting someone help and the mutual benefits doing so provides. We’re not talking about the full-blown tasks of personal caregiving. Mowing the lawn, grocery shopping, babysitting and moving heavy objects are just a few of the things that make a huge difference to us at this stage of the illness. It’s been our experience that when people are given the opportunity to help, it actually makes them feel good to play a part in fighting ALS.

It took us a little time to figure that out. Shortly after we were diagnosed, we were asked by our local MDA staff if we’d like to attend a fund-raising Lock-Up. While there, we introduced ourselves to the participants as clients of MDA and personally thanked them for what they were doing. And our gratitude was returned severalfold when we could see in their eyes the recognition that their efforts were making a difference on a personal level. Thanking them made us feel useful and appreciated, as well as grateful.

It’s important for us to remember that, just because someone offers help at one time, it isn’t guaranteed nor do we expect they can do the same things six months down the line. People’s lives are constantly changing, and we don’t try to “save” offers of help until we think we really need them.

When people learn that you have an ALS diagnosis, your relationships will change. Some people won’t know how to interact with you, but others’ devotion and caring will pleasantly surprise you. In our case we’ve been very fortunate to have both emotional and physical support come from more directions than we could have ever imagined.

As Steven’s symptoms progress, it wouldn’t surprise us if many of the people in our current support network become part of our “Share the Care” circle. These relationships are invaluable when dealing with ALS for reasons we’re still realizing. We’ve discovered that help is out there in places we would never have expected to find it. But it’s our responsibility to let the help happen.

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A support group is a safe haven — and much more. Everyone whoattends a support group may get different things out of the meetings.

Right after being diagnosed, it was important for us to participate in our MDA/ALS support group because we were treading water in an uncertain time in our life. But we didn’t know what to expect from the meetings, and frankly we were a little hesitant to go for fear of being exposed to more than what we wanted to see.

Many Benefits

As it turns out, going to the MDA support group for people with ALS in the Denver area has become one of the highlights of our month. We’ve received two primary benefits — and many other fringe benefits.

First, since the beginning of our life with ALS, support groups have exposed us to people who were ALS veterans. They were filled with knowledge and advice on what things help, what doesn’t help and what they would change about their lives. We call learning from them “not having to reinvent the wheel.”

Second, through our support group, we’ve been able to give back and feel useful to other families by providing our perspective and positive attitude.

The fringe benefits include forming new friendships and finding a safe place to talk about all the challenges and victories we experience with ALS, among people who understand firsthand.

The closeness and shared learning that arise from meeting regularly with other people are the main reasons for attending support group. But the outside information provided by the MDA coordinators in the form of guest speakers is also invaluable. At our meetings, we’ve had speakers and discussions covering a range of subjects, including gadgets, physical therapy, augmentative speech devices, hospice care, denial and grief counseling, insurance, assisted living, family issues, cultural issues and spiritual issues of all kinds.

There’s an important social aspect to support groups as well. We enjoy hearing about everyone’s trips, community involvement and even the dark humor that only families with ALS can truly appreciate. Humor is such an important coping mechanism with this disease.

Make It Your Own

The MDA support group in your community is yours for the taking. Make it your own and encourage others to attend. Our group includes patients, caregivers, mothers, fathers, sons, daughters, brothers, sisters and friends (some of the people with ALS don’t even live in the same state as the family members in our support group). You might be surprised as to what you get out of these gatherings.

If you’re planning to attend a support group meeting for the first time, check out the subject to be discussed. If it happens to be hospice, for example, that may be an important subject, but one you may not be ready for if you’re in the early stages of ALS. Perhaps you’d prefer to wait for the next meeting.

Or, if you don’t like the first meeting you attend, give it a second chance. These sessions are very dynamic in their content, so one month’s interactions could be entirely different from the next.

In closing, we’re grateful to MDA for facilitating these support groups for us. They’re an incredible tool to aid us in our life with ALS.

One thing we’ve learned in our new life: We can’t do it alone. MDA is there for us, not just leading the research efforts, which give us hope, but providing top-notch services as well, including support groups where we can be among friends.

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Are you living with ALS or dying from ALS?

We all have a choice at this defining time in our lives. Readers of this newsletter have been touched by ALS, and those of us who have the disease must make some of the most difficult decisions we’ll ever face.

We’ve chosen to live with ALS. Redefining ourselves has been an evolving and necessary process in making that commitment. We had to let go of our old life and our old dreams, and create a new life with new dreams.

A large part of our new life is the opportunity to serve as co-chairpersons of MDA’s ALS Division. We’ve been given an incredible honor — to represent an amazing group of people. We don’t take this responsibility lightly.

When we tell people we feel oddly blessed by this disease, that sometimes takes them by surprise. We have a daily reminder of how fleeting life is and a reminder to take advantage of every day we’re given, whether it’s with each other, Christopher, family or friends. No one is guaranteed tomorrow.

The value of our relationships has been greatly enhanced over the last two years. One of the most important lessons we’re trying to teach our son is that people are defined by their character inside and not by the outside shell our bodies represent while we are on earth.

Our new mission in life is threefold. First, to raise public awareness of what ALS is and what its effects are. We prefer to call it ALS instead of Lou Gehrig’s disease, because it’s our experience that when Lou’s name is mentioned the general public assumes they are knowledgeable about ALS, but in reality they simply recognize the name. Of course, we’re very thankful for all the attention that’s been brought to ALS through his name.

Our second purpose is to raise funds for research, which is why the first point is so critical. People are more likely to open their wallets for a cause they can truly relate to.

Our third, and most important, purpose is to provide help and hope, whenever possible, to all the people affected by this disease.

Hope comes in many forms. Right after Steven was diagnosed, we clung to every word that was mentioned about ALS in the media; each bit of coverage meant that more people were learning about ALS, and that gave us hope that a treatment or cure was being actively pursued.

In order to accomplish our new goals we’ve opened up our lives. We’ve found that, once we tell our story, people don’t treat us the same, for better or worse. But changes in our relationships are worth it for such an important cause. We believe that, the more people we meet, the more lives we can positively touch.

We’d like to leave you with this thought: Not one doctor or 100 doctors can tell any of us how long we’ll live. We mustn’t cling to the words we heard when we were first diagnosed, predicting our future. Though we’re uncertain how Steven’s ALS will progress, we’d rather have the quality of a few short years than the quantity of numerous years without the meaning and purpose we have.

We believe that this disease is largely about your mental attitude. If you let it get the best of you, the disease wins.

So fight! Remember it’s how you chose to live, not how you died, that is your legacy.

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