[Emma]

Greetings.  I am 58 yo  female with onset in my limbs August 2017.    My formal diagnosis was May 22, 2018.  I am currently on Riluzole and Ibudilast.  I have been taking  Riluzole since July 2018 and recently started taking Ibudilast.  On Ibudilast for 7 weeks now and feel no difference.  I felt I would try it as long as I had no bad side effects.  The only thing I found is it’s easier on my stomach after I eat a meal.  I take 10 pills/day (100mg) which is required dosage.   Got the prescription from my doctor who put me in touch the a social network for coordinate the order,

[Emma]

I live in a two story home.  As my ALS progressed in my legs, I found it more and more difficult to go up and down the stairs.  I had a chairlift company come to my home and give me a quote on a chairlift.  The quote was $12K and my insurance would not cover it.  They said it is not a necessity but would cover a hospital bed downstairs (my showers are upstairs).  I called my Doctor for some advice and they contacted the ALS Association.  They do have loaner chairlifts from time to time that people donate but did not have any at the time I called and said to check back.  I waited as long as I could (my husband pushing me up the stairs) and then I had to get it.  It’s a shame this is not considered a necessity by insurance.

[Emma]

Good Morning Dagmar.  I read your column every week and as well as the other columnists for the last couple of years.  I have never written until now.  I am 58 yo and was formally diagnosed with ALS on May 22, 2018 although onset was August 2017.  I twisted my right ankle as I ran down the stairs and since I was active, I thought it was just that from running down the stairs.  In February of 2018, while on vacation in the Dominican Republic, I developed rt drop foot (didn’t know what it was at the time).  My thoughts were when I twisted my ankle in August and since I never went to doctor,  it never healed correctly and now something was really wrong because I didn’t check it out.  Came home from vacation, visited orthopedist who took an x-ray which showed nothing and sent me to PT.  PT told me to get an EMG after 6 weeks of no improvement.  Fast forward, to other doctors and many blood tests, MRI’s, etc.  resulting in ALS diagnosis.  Right now, it’s only in my legs.  When I was first diagnosed, I was so angry and had meltdowns probably 2-3 times/week.  I was active, went to the gym at least 3 times a week, watched my diet, ate very healthy, a non-smoker and vitamin taker, drank alcohol socially (glass of wine) and cooked healthy meals 6 days a week.  I really thought because of all this, they got my diagnosis wrong.  And how can I have ALS when my sister who is 14 months older than I, has MS??  It’s impossible.  WRONG!  Unfortunately, they weren’t wrong.  The best advice I can give anyone who is new to this horrible illness is the advice that was given to me by my wonderful therapist.  Live, do, experience, all that you can now instead of feeling sorry for yourself.  You have a right to be angry.  Be angry for a few minutes of the day but move on because there will be a time when you can’t do what you want and you will wish you had when you could.  That was the best advice!!  I remind myself of that everyday.  I’m still really angry and I’m still in disbelief.  But I’m trying to do things that I enjoy.  I’m also lucky enough to still be working which I know helps my mind which is so important in this journey.  Read, travel, spend time with friends/family.  Do what makes you happy, it’s important to focus on the joy not the sorrow.  Sending prayers to pALS and their caregivers!