I Have ALS. Now What? A Guide for the Newly Diagnosed

By Ken Menkhaus, for the Joe Martin ALS Foundation

July 2019

This set of short essays was composed fifteen months after I was diagnosed with ALS in March 2018, and is written for others who have just learned they have been diagnosed with ALS. It tries to anticipate the most common issues faced by persons with ALS (pALS) in the first weeks and months following the diagnosis, and point you to helpful sources of support. I will update this periodically (note: original set of essays from July 2019 appear on the Joe Martin ALS Foundation website; updated versions will appear on this blog, Ken’s Caucus).  

Preface

First, I’m very, very sorry that you have ALS.

If you have discovered this essay online and are reading it, you are – like all of us who first got the diagnosis – scrambling to try to figure out what to do now.

You will quickly become frustrated by the fact that there are no set answers and no script to follow. This is because the symptoms and progression of the disease vary so dramatically from one person to the next, and because pALs find themselves in very different situations regarding health care access, caregiver and community support, family, and financial assets.  As a result, each of us ends up blazing our own trail – still benefiting from one another’s common experiences and collective support, to be sure, but having to customize decisions based on our own unique set of circumstances.

Much of what I share below is meant to flag common issues we all need to address, not to provide specific answers or advice. And some of the advice I do share, based on my own experience, will have more applicability to some pALS than to others. These essays are written with US-based pALS in mind – the support landscape for pALS in other countries is quite different.

There are other very good sources out there for people newly diagnosed with ALS, and I encourage you to read all of them. These are a good start: ALS Association Newly diagnosed guidanceYour ALS Guide  and I AM ALS newly diagnosed advice.

Dealing with the initial shock

You may have gone to the neurologist already prepared to hear that you have ALS. Or you may have gone in presuming that your problem was due to some other condition and were taken completely by surprise by the diagnosis. 

Regardless, all of us who get the diagnosis are initially in a state of shock.   You may be in shock now as you read this. I felt like a zombie for the first several days, like I was walking in the world but was no longer of it. It took me a few weeks before the sense of shock began to fade.

Try to avoid making major decisions immediately after the diagnosis that later will feel like rash actions. Give yourself time to let this new reality sink in. You’ll know when your mind starts to clear, and at that point you can begin to address the many, many decisions ALS forces upon us. 

And know that everyone reacts differently to the news. There is no right or wrong way to react.

Informing yourself about ALS and living with ALS

Like the rest of the general public, most of us who get the diagnosis don’t initially know a lot about the disease. You will have a million questions, and you’ll want to learn as much as you can about ALS and what steps you need to take.  Your most likely first step will be a google search of ALS. 

Be forewarned.

This can be a frustrating and somewhat traumatic experience. If you’ve already done this, you know. You can stay up late into the night scrolling through one site and forum after another, and can work yourself into quite a state of anxiety. I know I did.

First, there is the search for information about the disease itself. There are dozens of reputable websites that provide excellent basic introductions to the ALS. Most say pretty much the same things. See for example: 

Most of these explanations are meant to be pretty basic. If you’re looking for more detail, you’ll need to move on.

One option is to explore the actual research findings in scientific journals.  Here you will face two problems. First, many to most of the journals are subscription only, available to most of us only if we happen to work at a university which subscribes. You can read an abstract about the research but won’t be able to read the entire study. Second, even if you do get access, unless you are trained in the field and in statistics you will not be able to interpret the research. 

The best alternative is to follow sites devoted to providing summaries of research findings that are accessible to laypeople. One of the best is ALS News Today. Another is the NEALS monthly webinars, which treat a range of medical and nonmedical topics related to ALS in an accessible fashion.

You will also have many questions about how people live with ALS and prepare for stages of the disease – everything from dealing with social security disability insurance to handicap accessing your home to voice banks to living wills and beyond. This part of your quest for information is going to feel overwhelming at times.  

For one thing, there are so many issues to consider and decisions you and your family will have to make. It helps to make a list and prioritize so you feel at least a semblance of control. In my experience, the best source with a clear inventory of issues to prepare to address and advice on how to handle them is the ALSA’s Living with ALS Resource Guides. There are lots of other helpful guides for the newly diagnosed – see the list of sites I provided at the beginning of this essay.  But you should also rely on your  multi-disciplinary team at the ALS clinic you are going to or will go to for consultations. That team will help answer a wide range of both medical and nonmedical questions you may have. If at all possible, go to these consultations with a family member or friend who can help record and remember the conversation. It will be more information than you can take in, especially if you’re stressed (which we all are at these consultations). In some locations in the US, there exist local or regional ALS support groups like the Joe Martin ALS Foundation in Charlotte (for which this essay was originally written), which are a rich source of guidance as well.

Another, more emotionally fraught source of information are ALS on-line forums, personal blogs of pALS, and Youtube videos.  Here you will get direct, unfiltered views, advice, reflections, and complaints from fellow pALS and their caregivers (CALS).  On the positive side, you’ll learn a lot from fellow pALS, most of whom participate in these sites with great courage, compassion, and a sense of humor. A few are even so cheerful they can be annoying on a bad day.  But some entries are understandably raw with emotion – including anger, despair, and exhaustion. The difficulties they discuss can be horrifying to a newly diagnosed person with ALS, and the entries from exhausted caregivers are very painful to read.  I recommend you start with a forum that has a moderator, and stop reading if entries are too upsetting. A good place to start is the ALS Forums.  PALS on this site are very supportive of new members with questions they seek answers for.

If you explore personal blogs and Youtube videos produced by people with pALS you will encounter a huge range of content – from inspirational to helpful to angry to very emotionally wrenching. Keep in mind that blogs are written over time and so many are started by persons with ALS whose entries, over time, chronicle their declining health and impending death.  Some are inactive blogs of the now-deceased.   I have benefited from these sites, but on several instances was hit very hard by the stories and videos I read and saw. Prepare yourself before diving into these waters.

A final point about using the internet to inform yourself – beware of the unscrupulous groups trying to exploit our desperation by selling “snake oil.” Don’t be suckered in by people claiming that they were “cured” with some homegrown remedy that you can purchase from them.

Sharing the news – who and when 

Your diagnosis will force you to make some choices relatively early on, whether you are ready or not. “Not to choose is to choose” as the saying goes. One of the first issues you will confront is when to share the news with whom. This is not easy, and a number of factors should be taken into account.

Closest family members: it seems obvious that your closest family members should be told right away, since they will be dramatically impacted by the news and have a right to be part of your grieving, adjusting, and initial planning.  But there are variations on this theme. If you have children, you may want to wait until school is out or a vacation starts so you are minimizing possible disruption in their schoolwork (the ALSA has a great set of  guides for sharing the news with children, teens, and young adult children, please take advantage of these materials). This is a case by case decision that each of us has to make on our own.

I had an unusual situation that led me to hold off on sharing the news with some family members. When I got the diagnosis, my wife’s parents were visiting us from Sweden, and I did not to want to spoil that family reunion with the news I had ALS. So I kept it to myself for two weeks until my in-laws returned home, at which point I broke the news to my spouse. I can tell you that those were two of the hardest weeks of my life, and I would not recommend anyone doing that if you can avoid it.

As for telling our three children, my wife and I opted to break the news slowly, by first telling them that I was diagnosed with a degenerative nerve condition and that I would probably need to use a wheelchair in the future, that the doctors aren’t sure what it is, and that it might be something bad like ALS, but we don’t yet know.  I held off until  8 months later, after Christmas, to tell them the bad news. I was able to do this in part because I have (so far) slow progression, and so was able to “pass” as just having a limp during that year. I don’t regret doing this, as it bought me the better part of a year to travel and spend time with the family without that cloud hanging over their heads. But for most PALS, whose progression is faster, they don’t have the luxury of time to put off sharing the news for very long.

Be prepared for a wide range of reactions from family and friends as you share the diagnosis. Everyone has their own way of absorbing this kind of bad news. Most will be amazingly supportive. Some feel compelled to give unwanted advice – just take it politely and nod, they mean well. Others may immediately start to tell you about an illness they or their relative has or had, as though you’ve just entered the “Who Has the Worst Disease” Olympics. Cut them some slack too; as one observer put it, “some people give you their heartbreak like a gift.”

One piece of advice I would share is this: do not render judgement on friends and family members based on their response to the news. There is a bromide that circulates among some with terminal illnesses that “you find out who your real friends are.” I’m not convinced that is true. I have had a number of friends  who did not initially respond to my news, who later confided that they were too upset or simply unwilling to accept it. People are complicated, especially in response to bad news like this, and you will do yourself and them a huge favor by showing them some grace if their reaction and support initially is not what you expected.

Sharing the news about your condition publicly – and make no mistake, once you start to share the diagnosis beyond immediate friends and family, word spreads fast – is a decision shaped by how private a person you are, how fast you perceive your progression to be,  and how visible your condition is. Because I have slow progression, I opted to wait for over a year from my diagnosis before sharing the news widely, mainly because I didn’t want to be a distraction at work and in the classroom (I teach for a living). If you need to mobilize help from your circle of friends and family, letting people know sooner is obviously better.

When you do share the news widely, do it during a period when you are able to cope with the flood of messages of condolences and support. Depending on how many people you tell, this can be a bit overwhelming for a few days.

I have found little advice on the internet about how to share the news with supervisors and work colleagues.  Most websites seem to assume, probably correctly, that most persons diagnosed with ALS (if not already retired) leave work immediately and go on disability. The fact that the diagnosis usually takes so long means many to most persons receiving the diagnosis are in fact getting to the point where they can longer work by the time they get the diagnosis.  For those of us who have jobs that allow us to continue working for a time despite the disease, and who have slow progression, deciding who to tell when at work is a choice that you need to consider carefully.  On the one hand, making supervisors and your HR office aware of your progressive disability will allow them to work with you to create a work environment that accommodates you, which they are legally bound to do. It also should shield you from being laid off for reasons related to your condition, as long as you are able to fulfill your work function.

Not divulging your condition in your workplace or your professional circles can make sense if you fear that clients and co-workers will cease investing in working relationships with you. I do some consulting work internationally and was worried that the phone would stop ringing once word got out of my condition, and so I made sure to reassure those work colleagues I was still fully functional to meet their needs.

How to share the news

How you deliver the news to family, friends, and colleagues is more important than you may think. I urge you to give this careful thought, because the way you frame the news will shape how people respond to it and interact to you.

There is no right way or wrong way to do this. You may choose to convey sadness, anger, hope, faith, or a thousand other themes, and on this count my only advice is to try to be true to yourself (easier said than done with so many conflicting emotions running through us). But whatever tone you choose to strike, I would urge you to put yourself in the shoes of those reading or hearing the news, and try to help guide them in terms of how you would or would not like them to respond. People hearing about a terminal diagnosis react in many different ways, and you’ll be on the receiving end of all of them. But in almost every case their common fear is saying the wrong thing to you. Some will be so afraid of this they will actively avoid interacting with you, even though they care deeply about you. If you can help them out in your communication by telling them what kind of response is or is not welcome, they will be grateful and much less anxious about reaching out to you.

I took the approach of directly asking everyone not to walk on eggshells around me or worry about saying the wrong thing – that I have a thick skin and a sense of humor and that I am good with both them asking me how I’m doing or not saying a thing, whatever works for them. Lots of friends wrote back thanking me for freeing them up with that advice, which made me think that it’s worth sharing with you all. The letter I sent out sharing my diagnosis is posted on my blog and you are welcome to borrow from whatever part of it may be useful to you. You may prefer to tell people in person, but I found that most preferred to absorb the news privately by being told via email or a letter.

Planning, the initial phase

Several of the websites I suggested above do a very good job helping us plan out next steps, and I won’t repeat what they have to say, except to add that you should try to organize all these tasks by high priority vs lower priority and by ease of completion. Otherwise you and your future caregivers will be overwhelmed trying to trouble shoot too many things at once. Among the easier things to complete (well, easier in terms of time spent, not easier psychologically) that will make you feel better about shrinking your “to do” list include:

  • Writing or reviewing your will
  • Creating a living will/advance directives
  • Starting the paperwork to gain access to medicare and social security disability insurance
  • Reviewing family finances and making a financial plan (or multiple plans, depending on circumstances) accounting for costs of equipment and homecare, and loss of income once on disability
  • Recording your voice on one of several voice bank programs.
  • Signing up on the national ALS registry
  • Working with loved ones to create a wish list of things you want to do together while you are still relatively mobile. This could be trips you’ve always wanted to take, or more time visiting with friends and family, or any of the other things we all wish we would be able to do more of (my family and I took the trip of a lifetime to show the kids where I work in East Africa, and though it was costly I have no regrets at all about it. It was an amazing collection of memories).
  • Doing preliminary exploration of costs of equipment and handicap-accessing your home (or, exploring moving out of your home and into a handicap access residence)

Depending on the speed of the progression of your ALS, you may or may not have some time to wait on big decisions like actually handicap-accessing your home and purchasing a power wheelchair. Again, the ALS support group websites are very good at giving guidance on these big and costly decisions. My sense, based on reading of hundreds of blogs and forum exchanges, and conversations with fellow PALS, is that the most common mistake is waiting too long.

Taking stock of your resources and support

You are going to need a lot of help and support in the months and years ahead. The hard and unfair reality is that pALS enter into the fight with ALS with wildly different resources. Some of us are resource rich, some of us are resource poor. We will need to draw on whatever assets we have at our disposal, so take stock now to help develop a strategy. These resources include:

  • Financial. Review your savings and fixed assets and try to calculate how much you and your household can afford when you go on disability and begin facing the increasingly large costs of care and technological support that are not covered by insurance. The main ALS websites out there have information on the costs of care. They are astounding figures. The cost of complete home care, which we will need in late stages of the disease, is estimated at $200,000-$250,000 per year, which will bankrupt most families within a year or two. But know that there are many sources of support to help offset these expenses (discussed below).
  • Family. Discuss openly with your close and extended family about what they can and cannot do. Some will be able to promise time as a caregiver, but not financial support; others may be able to write checks but won’t be in a position to help as caregivers.
  • Your social capital (extended network of friends). Most of us don’t have the level of savings needed to cover the huge caregiving costs of the disease in late stages. But many of us are rich in social capital – our network of friends, neighbors, co-workers, and fellow congregants if a member of a faith group. Take stock of this important asset, as it will eventually be a potentially powerful source of support. Ten years ago, in my town, a woman with a husband and two young children was diagnosed with ALS, and members of the community rallied to organize to raise funds for the family and help look after the children.
  • ALS Support Groups. The ALS Association local chapters, and other ALS support groups, are expert at providing a variety of assistance for PALS and their caregivers. Make full and early use of these support groups. 

The most important thing to keep in mind is, regardless of your circumstances,  you are not alone. Make full use of any and all help you can get. Some of us are proud and hate to ask for help. This is not the time for that mindset.

Dealing with your own thoughts and emotions

No matter how strong you think you are, you are human, and you will need time to cope with the diagnosis even after the initial shock has worn off.   The quiet of late evenings, and the first minutes when your head hits the pillow at night, when you are not preoccupied with day-to-day issues, can be a time for useful reflection or a time when your mind wanders to dark places.

Depression is a common symptom for persons with ALS, for obvious reasons. Get counseling if you need it.

No matter how centered you are, ALS-induced anxiety will be a periodic and chronic part of your life.  This can come from worries about dying; about health care costs and family finances; about the impact of your condition on your children and spouse; and about signs of progression of the disease.

Since I’m not a psychologist I’ll stay far away from offering advice on this subject, except to say that occasional bouts of anxiety are to be expected, and that it’s important not to overreact to good days and bad days. It’s easy to panic at every indication of a loss of muscle strength, but often it’s just that you’ve overworked your muscles too much and they are tired or you’ve sat all day and they are extra stiff.

If you need help with anxiety or depression, don’t “self-medicate” with excessive alcohol consumption or drugs, that could expose you to much greater risks of falling and injuring yourself. Your physician, professional counselors, and psychologists can help you manage anxiety and depression.

Depending on how advanced your ALS condition is, you may already have noticed that you have less energy than before. If it hasn’t happened to you yet, it will, and you need to be mindful of how much you can and should realistically ask of your body each day. Over-tiredness can compound anxiety.

One daily mental and emotional aspect of the disease that will surprise you is the fact that you will suddenly hear and see constant references to ALS, other neurological diseases, disability, and death in conversations and in the media.  I was shocked at how prevalent these and other reminders of my condition pop up all the time. In the past, I simply was not sensitized to these references and so they made little impact. Now they do.

You will also be surprised at how many of your friends’ and colleagues’ lives have been touched by another ALS case. The disease is considered rare, but if one in every 300 people die of it, that means almost every person knows of at least one case. To put it in perspective, that’s roughly one to two members of every high school graduating class.

Another emotionally challenging aspect of day to day life with ALS is dealing with the fact that so many of our conversations are about the future – planning vacations, career changes, kids’ school changes, retirement, you name it. I never realized how future-focused my conversations with others were until I suddenly was told I no longer had one. I came across a fine essay on how to talk with others when diagnosed with a potentially terminal illness. The author penned this memorable line (I paraphrase slightly), “the future is a language I no longer speak.” I think of that line often, even as I try to stay engaged in conversations with friends who are musing on the best retirement location. I am slightly envious of their casual use of the future tense, but happy for them that they can do it.

Always remember the impact on your closest family members

As you are no doubt realizing, your closest family members (some combination of spouse, children, siblings, if you have them) are likely to shoulder the heaviest caregiving and financial burdens. They may be at least as stressed as you at the thought of losing you, and at trying to work out what to do next.  Do what you can to help them through these first months of the diagnosis, and remind them of the support groups for caregivers.

Start keeping a medical journal, and a personal journal too if you wish

Record changes or perceived changes in your muscle strength, pain levels, and general health.  Monitor how you are doing with whatever exercises and weight lifting you can do. This is more useful than you may think. Our memories can play tricks on us when it comes to accurate recollection of when you first felt foot drop, how many minutes you could go on the bike machine, etc. Your doctor will appreciate getting these close observations from you too.

Dealing with your first quarterly consultation at the ALS clinic

Not all pALS have easy access to an ALS clinic, and so you may not be scheduled to go in for quarterly consultations with an ALS specialist (but you should try to arrange this, even if living in a remote rural area – your ALS support groups may be able to help you get to these meetings). But for those of you who are scheduled to go in for your first and second quarterly visits, know that these are by their very nature anxiety-producing affairs, which is why I am always amused that they take our blood pressure right at the outset of the consultation (mine turned out to be high. Who knew?). You’ll worry about test results that show decline in one or another indicator; you’ll share a visiting room with pALS in more advanced stages of the disease, which can be unsettling at first; and you’ll be engaged in talking about a range of topics that force you to confront issues you may have wanted to ignore. It’s all for the best, and the teams at the ALS centers are amazing people who are there to help – but just know that if you walk through the door with a sense of dread, you’re not alone.

Support Group Meetings

ALS support groups hold monthly meetings for PALS and their caregivers. It is a chance to exchange ideas and advice on all kinds of ALS related matters, and to build relations with another layer of local support. If you are up to it, consider attending one of these. With caregivers.

Coming to grips with the likely but unknowable trajectory of your ALS

This is a tricky but important subject, and one that you will be preoccupied with over the next six months and beyond.

As you may know if you’ve done some basic research on the disease, life expectancy after diagnosis varies a great deal among pALS. The median life expectancy is 3 years. Of those who live longer than 3 years, 20% live five years or longer. Ten percent of all ALS patients are true “slow progression” cases who live ten years or longer. Some PALS pass away within a year of diagnosis. The sister of a friend of mine died only two months after the diagnosis; I know of others living 15 plus years since they were diagnosed. It’s very unpredictable. And that makes planning for the time we have left complicated.

The “typical” rate of progression, as measured by the ALS Functional Rating Scale, which you will get to know, is a loss of one point per month on a scale of 0 to 48, which assumes a steady deterioration. But that is not how ALS always progresses.  PALS can stay on a plateau for months, or even years, and then experience a significant progression of the disease. Some pALS report an early fast progression followed by a lengthy period of stasis.  Despite this maddening variability, the general, very imperfect rule of thumb is that slow progression at outset is the best indicator of continued slow progression.  Much depends on where your symptoms first appear (limb onset is more closely associated with slower progression than bulbar onset).

Over the coming months, you will find yourself monitoring your condition closely, maybe even a bit neurotically, to try to determine if the disease is progressing at a typical or a slower rate. In six months, you may have a somewhat better sense of your trajectory.

Why does this matter? In the short term it may help you plan and prioritize, though it is important that you not delay important decisions just because you feel (or are told) that you are a slow progression case. For pALS with typical progression, the main preoccupation will be pretty immediate issues – how to get all essential paperwork in order,  handicap access the house, and secure support technology like power wheelchairs. For those with slower progression, concerns are a bit different. I recommend to those of you who appear to have slower progression to create multiple scenarios, based on best case, middle case, worst case progression, so that you have a plan you can adopt as circumstances unfold.

In the longer run, the speed at which the disease is progressing in each of us is now part of a simultaneously hopeful and terrifying calculation about possible survivability – the topic of the next section of this set of essays.

Surviving ALS? The prospects of new treatments

You have been diagnosed with ALS at a singular moment in the history of the disease. In the past, a diagnosis of ALS was followed by advice to “get your things in order” because the disease is 100% fatal. Today, we are part of a unique generation of pALS who have a chance – maybe a pretty good chance, maybe only a “puncher’s chance” —  of surviving the disease. Thanks in part to the big funding push for ALS research that the 2014 Ice Bucket Challenge made possible, a number of potential therapies have now made their way through the (unavoidably slow) research pipeline to clinical trials. Medical scientists working on ALS are now voicing optimism that a therapy will be developed in the next five years that will either dramatically slow, halt, or even reverse the disease.  

To use an over-worn cliché in the ALS community, “we’re in a race against time.”

If in fact we are getting closer to discovery of a therapy that will render ALS a chronic and not fatal disease – and it is impossible to know when this will occur – those of us with ALS today are either going to be the last cohort of PALS to die of the disease, or the first to survive it. I know which one I prefer.

The closest approximation to our situation is the discovery of a cocktail of drugs in 1995 that effectively treated HIV/AIDs. HIV/AIDs patients faced 100% mortality rates up to 1995; thereafter mortality rates plummeted, and today people with HIV/AIDs are able to live with the disease as a chronic condition.

Two factors, both outside our control, will determine if we will be able to benefit from effective therapies in time. First is the length of time it will take for these therapies to be discovered and approved, and the second is the speed of progression of the disease each of us is dealing with. One of the reasons many of us have joined ALS support and advocacy groups is to lobby hard for a big push by the National Institutes of Health (NIH) to increase funding for ALS research at this critical moment. Tens of thousands of lives potentially hang in the balance.

This is not meant to build up false hopes on our part, but it is to say we have a reasonable hope.  I have found it psychologically very helpful to keep telling myself that I will be part of the first generation of pALS who survive this disease.

Participating in Clinical Trials, ALS Surveys, National Registry

As a newly diagnosed person with ALS, you will be asked if you are willing to participate in clinical trials of drugs and other therapies that might slow or stop ALS. You will also be asked if you are willing to participate in a number of other studies on ALS (some may ask you for a saliva sample, for instance). And you will be asked if you are willing to fill out surveys, and submit your information to an ALS national registry.  

Please consider participating! We pALS are not just patients, we are essential, active partners with medical researchers in a quest to understand the causes of ALS and find a cure. Researchers cannot find a cure without our participation. The survey research and national registry are essential to helping researchers look for combinations of environmental and other factors that might offer clues as to what triggers ALS. Please fill them out. As for clinical trials, newly diagnosed pALS are essential participants – most trials will not accept pALS who have had symptoms for more than 24 months, so your role in trials of new therapies will be limited to the first year or so (depending on how long it took for your diagnosis) after your diagnosis.

Participating in a clinical trial is a sacrifice we pALS make for one another. It may involve frequent travel to clinics, or scheduling that is inconvenient, and you may end up getting a placebo rather than the actual drug or treatment (there are important scientific reasons for this; be aware there is an ongoing debate about use of placebos for diseases like ALS).  But you may also get the opportunity for early access to a new treatment that slows or stops the disease. And even if the trial does not result in significant results, you have still helped advance our knowledge of the disease and brought us closer to the day when we have a cure.

Be aware that there are more than one registry projects for ALS, so joining one does not guarantee you have joined all. This is an unnecessary confusion that ALS researchers and organizations are trying to better coordinate. The most important one is the National Registry, which you can access here. The others are legitimate and you certainly should register with them as well if you choose.

When you join the National Registry, you have the option of  receiving notices about research studies related to ALS, which will come to you by email.  This is a convenient way to monitor at least some clinical trials. A more comprehensive listing is apparently available at the ALS Therapy Development Institute website’s listing of clinical trials.  Or you can follow all active ALS research projects and see which are recruiting volunteers for trials at this National Institutes of Health (NIH) clinical trials website.

Activism on ALS?

Many pALS and their caregivers are too preoccupied with responding to all of the changes ALS forces on them to devote much energy to lobbying the government for legislation related to ALS or fundraising for research on a cure for ALS. That is totally understandable. But if you and your friends and family feel energized to try to help with fundraising for ALS research or get critical laws passed in support of ALS medical coverage, support, and research, welcome! You will find yourself in good company. Thousands of PALS are trying to make a difference in the time we have.

One warning: when you search the internet and social media to see who is doing what on ALS advocacy, you will discover that the ALS community is very fractured, with a few flagship organizations (like the ALS Association and the Muscular Dystrophy Association) and many, many smaller fund-raising, support, and advocacy groups.  For the most part, these groups work toward a common goal, but there is a distressing amount of badmouthing on social media, lack of coordination, and redundancy of effort. One exasperated PALS concluded that “ALS is the most fractious fundraising group in the country.” You are likely to feel just as frustrated as he did once you survey the ALS landscape.

Many of us are quietly working to address this problem. For now, don’t be put off by the back-biting, and don’t let the angriest voices on social media sway you. The spats in social media only end up hurting all of us with ALS, by eroding public confidence in all of our organizations. What pALS need is unity of purpose and a collective commitment to a “do no harm” principle. Meanwhile, please explore ways to join our fundraising, awareness-raising, and advocacy efforts if you can.

Finding a purpose in your new reality

You’ll likely have plenty of conversations with yourself about this in the first months after the diagnosis. Do you refocus time and energy on doing all the things on your “bucket list” while you can? Do you devote more time to being with family and friends? Do you jump into your work (if your work has real meaning and value to you and others)? Do you engage in advocacy or volunteerism? Do you use your response to the illness to try to set a good example for your children and others, and if so how? Do you deepen or rediscover your spirituality or connection with God? Do you try to do a bit of all of the above?

PALS forums and blogs are rich with discussion on this topic. Whether we have only a little time  or seven years or (if treatments are developed in time) a full lifetime left to live, the diagnosis compels each of us to think hard about how we want to spend the rest of our lives. For as much as I hate having this diagnosis, I have to concede that it has had a clarifying effect on my sense of purpose in life. I’m spending more time with family and friends, and replacing some of the more pointless work I’ve shouldered with advocacy work on ALS. It has also made me a better human being — I am a more empathetic person than before.   I hope you will find this is true for you.  We don’t control the disease, but we can control how we respond to it and live with it. 

If you remember nothing else from this essay, I hope you retain these two messages:

You are not alone.

There is hope for a cure, so don’t stop fighting to be part of the first generation of pALS who survive this disease.

I wish you well.

4 thoughts on “I Have ALS. Now What? A Guide for the Newly Diagnosed

  1. So informative, compassionate and well stated!
    And, Thorough!!! Vann and I look forward to meeting you and Karin and anticipate our appointment at the ALS Clinic (Monday and Tuesday of the coming week) with hope and much gratitude for the support you’ve provided.
    Best, Alice and Vann Matthews
    (By Alice (Secretary) with Vann’s approval (President).)

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  2. Dear Ken, it took me a while to read this. It is full of practical wisdom. While your audience may be PALS, so much of this relates to any individual or family facing a major, terminal illness. I wish I had something better to offer than words of support. You’ve touched so many lives as a professor and researcher, and every day you are able to continue sharing that knowledge and insight, it is a gift to us all.

    Like

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