njk0407
Active member
- Joined
- May 10, 2016
- Messages
- 84
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- NC
- City
- Holly Springs
Hi Everyone,
It's been awhile since I've last posted. I've been muddling through what I now know to be the "7 stages of grief". I see a therapist weekly and am on anti-depressants. While not a "cure all" it has definitely helped. My PALS is doing good on his Tirasemtiv clinical trial. I've noticed some slight progression mainly with he has seemed to "slow down" with his overall movements (takes him longer to do things), he's had some balance issues (mainly if he tries to squat down or sit on the floor), and his speech is slightly worsening
Overall though I think he's still in pretty good shape. I wanted to let you know for those who might be interested that I found this 6 part series on Youtube called "Imagine Heaven" I actually started watching it yesterday while at work (shoosh don't tell ) and it has given me tremendous hope and has seemed to pull me out of the pit I've been in for the past month. I've been having a really hard time emotionally especially with having young kids. This diagnosis and disease is heartbreaking as you all know too well. Sometimes the panic sets in and I feel as though I literally can't breath if I let myself think about it for too long I would give anything for this to not be happening and to have my husband around for many years to come. Our 5 year old son still is not aware of what's going on, but I get the feeling we need to talk to him soon as I'm sure he is detecting some changes with Daddy. Thankfully our 1 year old is oblivious. I'd like to thank you all again for being an outlet of support and especially at the beginning of diagnosis. Several times I've went back to my original posts and have reread what I posted. To say I was in shock and in complete and utter despair is an understatement. Thankfully, the shock does wear off and although it still sucks it's more manageable.
It's been awhile since I've last posted. I've been muddling through what I now know to be the "7 stages of grief". I see a therapist weekly and am on anti-depressants. While not a "cure all" it has definitely helped. My PALS is doing good on his Tirasemtiv clinical trial. I've noticed some slight progression mainly with he has seemed to "slow down" with his overall movements (takes him longer to do things), he's had some balance issues (mainly if he tries to squat down or sit on the floor), and his speech is slightly worsening
Overall though I think he's still in pretty good shape. I wanted to let you know for those who might be interested that I found this 6 part series on Youtube called "Imagine Heaven" I actually started watching it yesterday while at work (shoosh don't tell ) and it has given me tremendous hope and has seemed to pull me out of the pit I've been in for the past month. I've been having a really hard time emotionally especially with having young kids. This diagnosis and disease is heartbreaking as you all know too well. Sometimes the panic sets in and I feel as though I literally can't breath if I let myself think about it for too long I would give anything for this to not be happening and to have my husband around for many years to come. Our 5 year old son still is not aware of what's going on, but I get the feeling we need to talk to him soon as I'm sure he is detecting some changes with Daddy. Thankfully our 1 year old is oblivious. I'd like to thank you all again for being an outlet of support and especially at the beginning of diagnosis. Several times I've went back to my original posts and have reread what I posted. To say I was in shock and in complete and utter despair is an understatement. Thankfully, the shock does wear off and although it still sucks it's more manageable.
