We are awaiting a second opinion. He is 86, which I realize is older for ALS. He lives alone and does not have to climb stairs. Any advice? I realize this is open ended. I am sad and not sure where to turn.
Father newly diagnosed
- Thread starter samsmom
- Start date
- Status
ottawa girl
Moderator emeritus
- Joined
- Jun 14, 2012
- Messages
- 1,569
- Reason
- PALS
- Diagnosis
- 04/2012
- Country
- CA
- State
- Ontario
- City
- Ottawa
That's so sad at 86!
If he was my Dad, I'm thinking he ought not be living alone. There are many dangerous hazards with ALS - especially falling and choking. I would urge you to discuss with him, sooner rather than later, how he feels about having someone stay with him. While he may be doing well at the moment, there is no telling how fast or slow his ALS will progress. Initially, maybe family members and friends can "share the care" in keeping him company and ensuring he's safe and eating well. Ensuring that his home is safe in terms of grab bars, barriers etc. is essential.
This diagnosis is, as you are acutely aware, a very tough one to accept - Doesn't matter how old one may be! Many people get depressed, so keep an eye out for that too.
You have come to the right place for reliable information. We will be here to help support you as you navigate this new reality. I am very sorry you have to be here and I hope the second opinion is better news.
If he was my Dad, I'm thinking he ought not be living alone. There are many dangerous hazards with ALS - especially falling and choking. I would urge you to discuss with him, sooner rather than later, how he feels about having someone stay with him. While he may be doing well at the moment, there is no telling how fast or slow his ALS will progress. Initially, maybe family members and friends can "share the care" in keeping him company and ensuring he's safe and eating well. Ensuring that his home is safe in terms of grab bars, barriers etc. is essential.
This diagnosis is, as you are acutely aware, a very tough one to accept - Doesn't matter how old one may be! Many people get depressed, so keep an eye out for that too.
You have come to the right place for reliable information. We will be here to help support you as you navigate this new reality. I am very sorry you have to be here and I hope the second opinion is better news.
Thank you Elaine for the advice. I will definitely try to heed it. Unfortunately I am the one and only caregiver for him and he is fiercely independent. I am letting it all sink in while we await an appointment for a second opinion but feel so helpless I just want to start finding ways to help him. Perhaps I need to step back and let it all sink in.
ottawa girl
Moderator emeritus
- Joined
- Jun 14, 2012
- Messages
- 1,569
- Reason
- PALS
- Diagnosis
- 04/2012
- Country
- CA
- State
- Ontario
- City
- Ottawa
It does take awhile to sink in... Took us about 6 weeks before the " shock fog" lifted.
It's great that your Dad is independent! We PALS are typically a stubborn lot. Sometimes to our detriment. Sometimes not. Either way, this stubborn streak can be very frustrating to our CALS.
Truth be told, we all feel helpless in dealing with this illness. Until a cure is found, we will remain helpless. But there is strength in numbers. We share in that strength here. That gets us through each day.
Personally, laughing helps! In the beginning, I thought I'd never smile again, never mind laugh. My daily tonic now is usually a great big, spasm causing, belly laugh.
It's great that your Dad is independent! We PALS are typically a stubborn lot. Sometimes to our detriment. Sometimes not. Either way, this stubborn streak can be very frustrating to our CALS.
Truth be told, we all feel helpless in dealing with this illness. Until a cure is found, we will remain helpless. But there is strength in numbers. We share in that strength here. That gets us through each day.
Personally, laughing helps! In the beginning, I thought I'd never smile again, never mind laugh. My daily tonic now is usually a great big, spasm causing, belly laugh.
mich5
Distinguished member
- Joined
- Apr 20, 2012
- Messages
- 275
- Reason
- PALS
- Diagnosis
- 01/2012
- Country
- US
- State
- west
- City
- mid
Perhaps at your second opinion you could ask the doctor for suggestions about the future and things to plan for as he lives alone. Maybe hearing suggestions from a doctor will be more well received by your dad.
TGB1
Distinguished member
- Joined
- Mar 23, 2013
- Messages
- 197
- Reason
- Lost a loved one
- Diagnosis
- 12/2012
- Country
- US
- State
- PA
- City
- Pittsburgh
My mom is 86 also and was diagnosed with bulbar als in 12/2012. Her symptoms (slurring speech and swallowing issues) started at least 2 years prior. She has a peg tube but is still strong and walking around. My 23 year old niece has moved in with her so that someone is there overnight. I am with her for a couple hours in the am and same in the pm. My sil does her tube feeding in the afternoon. I guess it would depend on how capable your dad is to be alone. My mom can be alone for a few hours at a time, but she always needs to know who will be coming next.
Wesley Cheek
New member
- Joined
- May 13, 2013
- Messages
- 5
- Reason
- PALS
- Country
- US
- State
- virginia
- City
- hamburg
Great advice from previous posts, except I'd be hesitant about law school students doing legal work unless the school specifically provides and/or offers such services. I'd hate to see a law student charged with "practicing law without a license" in an effort to assist someone.
hjlindley
Senior member
- Joined
- Dec 1, 2011
- Messages
- 761
- Reason
- PALS
- Diagnosis
- 10/2011
- Country
- US
- State
- VA
- City
- Richmond
And you have an amazing ALS clinic at Mass General with some of the nicest people I have ever met. Does he have a circle of friends that can help out? And don't forget this is an automatic disability with the Feds so I am now working with my husband's insurance and Medicare disabilityand. Falling is a very big issue for us. I took to the power chair before I cracked my stubborn Scottish skull open. Definitely contact your local ALS Association as I think that chapter has a pretty good loaner closet. I have found are social worker here to be a real gift. We're here to help you anyway we can. Were all in this hot water together.
Hollister
Hollister
cervus
Senior member
- Joined
- Mar 18, 2011
- Messages
- 935
- Reason
- Lost a loved one
- Diagnosis
- 11/2010
- Country
- CA
- State
- AB
- City
- Leduc County
Great advice given already. The ALS Clinic team will, if they haven't already, suggested several procedures and comfort measures already, i.e. PEG tube and BiPAP, etc. This should certainly be discussed with your father and the sooner the better. So sorry you're all going through this. Sounds like he has great family members there to help and support him. Stay several steps ahead of this awful disease. Take care. Yasmin.
- Status
