ALS Guidance

Live your life until you can't


Symptomatic Treatment

Treatments and assistive technology to deal with symptoms and complications are always evolving, but include:

Nasal congestion
If the PALS wakes up and there is mucus to blow out, I’d try Nasacort an hour before bed.
If she wakes up and it’s clogged without mucus, I’d try Astelin just before bed.
Generics are available for both of these — the Nasacort is OTC.
Rescue spray if clogs recur and wake someone during sleep: Xlear if the nose is wet, saline spray if dry.

And remember to tweak the BiPAP and (if applicable) room humidifier as the seasons change. And make sure all machine and furnace filters are clean. Change each at least once every 3 months.
You may want to add a fan or air purifier with a HEPA filter. Don't add one that puts ozone into the air.

Spasms/spasticity
If pre-wheelchair, lift chair during the day (zero-gravity, “infinite position"), with cloth instead of fake leather upholstery to avoid pressure injury/heat/moisture buildup
Baclofen, tizanidine (Zanaflex) and/or clonazepam (Klonopin). Change doses only under medical monitoring. Note: these drugs are for spasticity, not cramping
Implantable baclofen pump, which can be used if oral medications fail
Physical therapy
In-home exercise, both stretching and strengthening
Massage, aquatherapy
Some find relief with mustard or pickle juice
Heated throws/blankets during the day
Heated low-voltage mattress pads at night — the cord can be taped to the frame so it doesn't get caught when the bed is used
Tizanidine interacts with caffeine, which should be maintained at a regular level. Baclofen and tizanidine can cause fatigue and dizziness. They may be taken together so long as the dosing is monitored.
Some people try diphenhydramine, the main ingredient in OTC antihistamines, but since it's sedating, it's best taken at night and may cause falls if someone tries to get out of bed

Cramps
Oral magnesium, potassium, or calcium may be helpful, but blood levels should be checked first. A drop or two of magnesium lotion rubbed into “hot spots” may be helpful.
Tonic water (contains quinidine); pickle juice and other sources of acetic acid.
Anyone with a history of heart problems, even a “benign” arrhythmia, should obtain a cardiologist’s approval before using any rx drug in this section, or even large quantities of tonic water.
Mexilitine is an existing drug for other uses that has been reported effective in cramps, but, like quinine, can affect heart rhythm.

Stiffness
Heating pads
Adequate wheelchair, bed, and recliner cushioning
Massage, stretches and range of motion exercises
Walking if/as safe; mobility devices when it’s not. If you are falling with a cane, it’s probably too late for a rollator and you should start the power wheelchair process.
A PT can help find the best exercises to loosen joints without risky maneuvers.

Speech difficulty
Speech therapy may help short-term
Voice banking (if your voice is already failing, Apple's Personal Voice feature, which only requires about 15 minutes of speech, is an option)
The Gleason Foundation may offer funding for a more extensive process (Modeltalker) if you have that much voice left
AAC applications like Verbally, Predictable, Proloquo and SpeakIt on iOS and Android — require use of a mobile device, via a switch, head tracking, or eye tracking
Personal amplification, e.g. ChatterVox

Drooling
Tricyclic antidepressants like amitriptyline
Other anticholinergics like Robinul
Botox injections
Older antihistamines like diphenhydramine, fexofenadine
Thicker secretions can be addressed with pineapple juice, papaya tablets, hot liquids; a suction machine may help remove some of them and a Cough Assist may help mobilize them if they get stuck.

Emotional lability (inappropriate laughing and/or crying)
Nuedexta®, which may also help with bulbar symptoms like impaired speech/swallowing, or tricyclic antidepressants (NOT both).
Combining SSRIs, trazodone, or mirtazapine with Nuedexta is not advised, due to increased risk of serotonin syndrome and other heart problems

Urinary urgency
Anticholinergics such as used in BPH, often at low doses to avoid dizziness and UTIs
Diuretics are generally not advised due to dehydration risk.

Constipation
Constipation arises from (1) weakness of the muscles that help move stool through the body (2) weakness of the muscles that help push it out (3) breathing weakness that makes it hard to hold your breath as you often do when you push

There are too many options to list…from cooked spinach and ripe avocado to warm drinks to salsa. Drugs that you buy in a store are discouraged unless all else fails, because they can cause dehydration and destabilize electrolytes.

Doubling down on fiber may make the problem worse, more to get stuck, especially without increasing liquid equally.

Do NOT stop eating or drinking because you are worried about urinating and pooping. There, too, there are many ways to deal.



 
 

No personal information is sought or retained by this Web server, other than any email you choose to send, and no site content may or should be construed as professional or medical advice.