Mary

Shannon,

We are so sorry you have had to join this community because it means you are dealing with this horrific disease.

As Amanda said every pALS is different and all of us who are caregivers feel lost.
Has he had a lung function test?  Are you dealing with an ALS clinic?  Have you joined your local ALS  Association’s support group for care…[Read more]

In Bill’s case the pain was one of the first noticeable symptoms and probably  helped to delay his diagnosis.

My husband was diagnosed with ALS with Respiratory Onset in September 2021.  We were told there was no pain associated with ALS.  In Bill’s case other than breathing and of course the rapid progression of losing the ability to use muscles, PAIN …..has been his biggest problem.  He has the typical head drop which is associated with Respir…[Read more]

My husband, Bill, needs an I pad or personal computer that will work with eye movements or other means.   He still has his voice but it gets very weak during the day.   His hands and arms are all but  gone at this point.  ALS with Respiratory Onset is the diagnosis. He is still ambulatory but has a motorized wheelchair for resting his head and usi…[Read more]

Finally got my hubby referred to a pain management and palliative care clinic that will prescribe liquid marijuana as part of a pain management treatment plan.   Our als clinic prescribed opioids even after us telling them that he couldn’t use narcotics as he has bad reactions and it adversely affects his breathing.
We are praying his ap…[Read more]

Duane,

Thank you for the information.  My hubby is to the point of needing a hospital bed.  He s struggling to get out of bed as his arms continue to weaken.
I worry about the size of a hospital bed.   Do they come in different sizes.   He has Respiratory Onset so he needs to be elevated and on his side.   He is 6’ 4” and 260 lbs at this point.  …[Read more]

Thank you for your kindness and suggestions.

Amanda,

Right now it is all so overwhelming.  We searched for over 18 months for a diagnosis. September 2021 changed our life as only those who have had this diagnosis understand.
I am forming new habits at home and work to make time for myself.  I am getting up an hour earlier to have some quiet time to try to relax and come to terms with l…[Read more]

Highly suggest you go to an ALS Clinic such as Mayo, Johns Hopkins or VCU.
Don’t give up.  There is someone out there who will help you.