initforever
Member
- Joined
- Sep 7, 2016
- Messages
- 17
- Reason
- Lost a loved one
- Diagnosis
- 10/2016
- Country
- US
- State
- FL
- City
- fort pierce
"There is no easy way of saying this but your EMG confirms~~You have ALS. I'm sorry." I wouldn't wish these words on my worse enemy. It's been a year since my PALS diagnosis and yet it feels at times as if it were yesterday. In less than a year we have gone from drop foot to using a trilogy averaging 14 hrs a day. The placement of a PEG (3 weeks ago) to the now ordeal of ordering his power wheelchair. House remodeling, building ramps, adjusting to what is referred to as our daily "new normal"(I long for the days of just normal), the loss of some friends, loss of words, the loss of dreams, forced retirement and the list keeps growing. However today I'm going to concentrate on being thankful what we've gained in this past year. A greater appreciation for moments not days, the family members and close friends that have been proactive rather than reactive, the true intimacy of just holding hands and that at the end of each month we can still count more good days than bad. (and as you know,the bad days can be really bad). I am thankful for this group. You have given us the ability to learn from the real pros not just the medical/textbook version. You have answered questions, asked and unasked. You have bared your souls to our reality and reassured us that we are not alone in this struggle. You each have educated, advised and encouraged. Thank you for this forum.