After diagnosis: visiting the clinic

Once you are diagnosed, the ALS center will set up a “first clinic appointment” and then generally try to see you once every three months or so. Try to make the first appointment a few weeks out from the diagnosis, so it has time to sink in and for you to obtain information, but if you have pressing equipment needs, for example, you will want the first available appointment (which often will be a month or two out anyway).

If your area doesn't have an ALS center or you don't want to go there, any neurologist or physiatrist (physical medicine/rehabilitation) can manage you if they are comfortable with doing so. You might need to make use of a local mobility clinic to get your power wheelchair, often based in spinal cord injury centers.

Most ALS clinics only see patients one or two days per month, so it can take a while to get an appointment. If you feel that you need to be seen sooner than the time slot you are offered, get on the cancellation list and plead your case with the clinic nurse. And remember, if you don’t click with anyone at the first visit, you may have another center to check out. Just like any other clinics, ALS centers are different, and you will seldom be going there more than once a quarter unless you enroll in a clinical trial that requires injections or infusions.

Here is a map of clinics. Please send any missing or incorrect listings to me.

Before each clinic:
Make sure the clinic has or will have your records if you were treated for ALS manifestations elsewhere

Bring a list of current changes, questions and concerns that need to be addressed. Often these will be written on a white board when you arrive.

Plan for and expect a long, hurry-up-and-wait day, meeting a lot of different people. Store contact information for each but identify your primary contact for the clinic and how you will communicate with them (phone, e-mail).

Get some sleep to be at your best to take in and obtain all the benefit that you can. Leave early if you haven’t been to the building before. If you use valet parking, make sure you know their hours and how to retrieve your vehicle if they are closed. If a crowded parking garage is involved, parking for wheelchair vans can be limited; know where another parking option is, before you go.

What to bring:
A notebook or mobile device to record notes; also, grab a business card from anyone who has one

A wrap, blanket, or sweater if you might get cold

Urinal, special straw/cup, bib, beverages, lunch, snacks; anything you’d need at home during the day to be comfortable. You may not have time or access to a cafeteria or vending.

Any mobility aids you use when you’re tired, like a cane or walker

Any catalog item you’re considering if you’d like the staff’s opinion, or an item you’ve bought that you’re not sure about

What happens at clinic?
Most ALS clinics will:

Offer a social worker (often from the MDA, or local ALS charity) to help you determine eligibility for financial aid and other resources such as CALS respite care

Refer you to clinical trials for which you may be eligible, though this is less likely to happen if your clinic is not one of the trial centers

Refer you to specialists outside the clinic if/as appropriate. If you have an issue that seems to stump your staff, or you’ve tried everything they have to offer, you have the right to ask if they are aware of anyone with more specific expertise. And, of course, always post a question on the Forums!

Measure and track muscle strength, lung capacity, atrophy and visible fasciculations [every visit]

Work with a DME firm (that will come to your home as well) to get you a power wheelchair that meets your needs and can suggest new parts or adjustments as ALS progresses. Power wheelchair orders take a long time, so when a PALS begins to lose the ability to stand or walk, it is time to start the process (as well as to look into lifts).

Advise on dietary adjustments to address decreased ability to chew, drink and swallow

Recommend on timing and referring you to radiology for a feeding tube

Track your cognitive and emotional status, with advice to you and your caregiver if/as signs of dementia or other significant impairment are detected. If a PALS finds this distressing, like any other aspect of clinic, you may ask that this not be a part of future appointments

If/as desired, address questions about the option for a tracheostomy (invasive ventilation) to extend life when BiPAP is no longer sufficient

Some clinics can advise on assistive technology if/when you become unable to speak. However, recent advances in built-in head and eye tracking for tablets, phones, and computers have made speech generation devices (SGDs) largely obsolete, and most PALS know more about their needs than assistive technologists.

Write an order for home health care when it becomes difficult for you to go out (usually physical and occupational therapy to evaluate equipment needs, and to tart an exercise regimen that caregivers continue).

Some agencies also offer a social worker for occasional visits. Later, the same agency may offer palliative care or hospice nursing, or you may need a different agency for that.

In most areas, there are multiple home health agencies in your network. If you don’t like the first one your center recommends, gather referrals and try another. The same may be true for DME providers, even if your clinic recommends the one(s) they prefer, which can be habit more than conviction.

Write an order for other equipment that you may seek Medicare and/or other insurance reimbursement for, such as a Hoyer-type lift and a hospital bed

Write prescriptions and recommend OTC and lifestyle changes that help with other symptoms, such as constipation, mucus, etc., and later, to help with air hunger

Advise on and write an order for hospice care, if you choose it or just want to interview agencies

Though this is a long list, it is still up to you to bring up issues as they arise. Don’t wait for someone to ask. ALS is a complex disease, and your clinical team members don’t know when you will experience what. And their protocols may not always accord with your priorities, to which you are always entitled.

However, clinic staff are often familiar with resources in the community with more ALS experience than others, so if they suggest some kind of assistance, such as “You should have an AFO for your foot drop,” ask, “Where would you recommend that I go to get a personalized orthosis?” and try to follow the advice, even if it is further from home. Sometimes providers can come to the clinic, so you do not need to make a separate trip. It doesn't hurt to ask!

After the first clinic
Visit the clinic as often you, literally, need to. There is no magic about once a quarter. Sometimes you may feel that you need to get in earlier than scheduled, and sometimes less often. Also ping your clinic when you need something, which often does not require a visit.

Physicians at ALS centers have different philosophies and training around discussing prognosis and progression — like how long you will live and with what symptoms. Some routinely share their opinions. Others will do so only after you’ve asked a couple of times. Some will try to remain noncommittal throughout your disease.

Share early and often how much you want to know, and you are more likely to hear what you need when you need it. Some physicians need to be asked directly, more than once: “I understand that this is not a perfect science…I am looking for your best estimate…Based on your experience, do you think it would be a good idea to move up my daughter’s wedding that is planned for next June?”

It's still your life
You may have a fatal disease, but with ALS, you are still a health care “customer;" your providers work for you. So do your due diligence, and let your resources know if/how you can best make use of them, within the limits of your disease.