Jomeha
Member
- Joined
- Apr 4, 2020
- Messages
- 10
- Reason
- CALS
- Diagnosis
- 03/2020
- Country
- US
- State
- NJ
- City
- Ringoes
Early May I posted feeling overwhelmed and several of you kindly responded and helped me calm. This is a belated thank you and I figured I’d just let you know where we are now.
Today my PALS turns 54. The same age his mother was when her ALS journey ended. It’s hard not to think about that. We’ll spend the day with our 28, 25, and 20-year-old kids. Make the birthday dinner that he asked for and play Yahtzee. Not what we would have done pre-diagnosis and pre-COVID, but it will be a nice day anyway.
A couple of you had suggested we be open and upfront with our kids. I agree that’s important and we have been right from the beginning. They’re part of the daily care and planning and have sat through virtual appointments with us. I couldn’t do this without them, as Joe is 6’ 3” and 230 pounds while I’m 5’ 2”. I just can’t lift him or help him roll or move alone.
We worked with Dr. Harms at Columbia for genetic testing, which has all come back negative. The kids do struggle some with the uncertainty and fear of the unknown future. I’m really not sure whether the negative is better or worse than knowing where their father’s and grandmother's ALS comes from.
Joe continues to progress quickly so I feel like I’m forever playing catch up. We have a great team through both the RWJ ALS clinic and the local ALS association chapter. He’s getting his PEG in the next couple of weeks. His wheelchair has been ordered and thankfully the ALS chapter is giving us a loaner until it comes in since he’s only walking with a person supporting on each side. We just need the ramp in first, so fingers crossed that goes in this week. His Tobii has been ordered and hopefully won’t take too long. We have to ask him to repeat a lot of what he says and can often only get words through context. I think we were told we may be able to get a loaner so I’ll put following up on that on my to-do list. His Hoyer gets delivered tomorrow. We’ve got a shower chair ordered, recliner chair that lifts, commode, adjustable bed, inflating mattress pad, and working on condom catheters. This has certainly been a learning experience for all of us. Anything else you’d suggest so I’m ready would be appreciated.
I’ve only posted a couple of times but I do read posts and find the sense of community and willingness to help amazing. Everyone’s journey is different but one point in common is that no one can do it alone. Thank you all.
Today my PALS turns 54. The same age his mother was when her ALS journey ended. It’s hard not to think about that. We’ll spend the day with our 28, 25, and 20-year-old kids. Make the birthday dinner that he asked for and play Yahtzee. Not what we would have done pre-diagnosis and pre-COVID, but it will be a nice day anyway.
A couple of you had suggested we be open and upfront with our kids. I agree that’s important and we have been right from the beginning. They’re part of the daily care and planning and have sat through virtual appointments with us. I couldn’t do this without them, as Joe is 6’ 3” and 230 pounds while I’m 5’ 2”. I just can’t lift him or help him roll or move alone.
We worked with Dr. Harms at Columbia for genetic testing, which has all come back negative. The kids do struggle some with the uncertainty and fear of the unknown future. I’m really not sure whether the negative is better or worse than knowing where their father’s and grandmother's ALS comes from.
Joe continues to progress quickly so I feel like I’m forever playing catch up. We have a great team through both the RWJ ALS clinic and the local ALS association chapter. He’s getting his PEG in the next couple of weeks. His wheelchair has been ordered and thankfully the ALS chapter is giving us a loaner until it comes in since he’s only walking with a person supporting on each side. We just need the ramp in first, so fingers crossed that goes in this week. His Tobii has been ordered and hopefully won’t take too long. We have to ask him to repeat a lot of what he says and can often only get words through context. I think we were told we may be able to get a loaner so I’ll put following up on that on my to-do list. His Hoyer gets delivered tomorrow. We’ve got a shower chair ordered, recliner chair that lifts, commode, adjustable bed, inflating mattress pad, and working on condom catheters. This has certainly been a learning experience for all of us. Anything else you’d suggest so I’m ready would be appreciated.
I’ve only posted a couple of times but I do read posts and find the sense of community and willingness to help amazing. Everyone’s journey is different but one point in common is that no one can do it alone. Thank you all.