Check out Your ALS Guide website.  My husband who had ALS for 5 years.  I researched the many websites available but not one that was concise and understandable.  We saw a big gap in the education for the caregiver whether family member or paid caregiver.  We raised funds to support the Your ALS Guide.  I hope patients and their caregivers find it helpful.

Check with pharmacist as to what medications that are crushed can be combined.

My husband had issue of loss of taste and appetite as well.  VSL#3 probiotic has made all the difference.  Our Costco has it approximately a dollar a pill taken once a day has made all the difference!!!

My husband goes to the ALS Clinic at National Jewish Hospital every 2 – 3 months. He is there for 4 hours seeing neurologist, pulmonary doctor, speech therapist, PT, OT, RT and dietician. Some visits involved pulmonary tests. Have received great recommendations from pulmonary doctor (monitors bipap and cough assist data and recently… Read more

My husband suffered from constipation as well. His neurologist recommended movantik (for opioid constipation), 1 ducolax pill, 2 senna tablets and 1 capful of miralox in water for the morning and at night 2 senna, and 2 stool softners. This change has resulted in daily bowel movements where before it was 4-6 days with no bowel movement.

Thank you for your replies photos would be very helpful. Currently my husband’s weakness is in arms and hands none in legs at this time but I want to be prepared and make modifications once.

My husband diagnosed 2 years ago with ALS.  We are looking for a home more accessible for bathing.  Though not wheelchair bound now we are wondering if using a transfer Mobility chair for commode/tub/shower  a good idea.  Which is better a roll in or transfer shower or a bathtub?  Has anyone installed a SafeStep tub or shower?

My husband who was diagnosed 2 years ago have traveled several times.  We drove to Denver, CO to visit my daughter and son-in-law staying one night in a motel in Cedar City, Utah.  Check out any hotel/motel for their cleaning process.  A motel is nice since it is outside entry to your room versus having to go through a lobby.I still went in the… Read more