informational

[floryb]

Hi everyone. i'm new to this so bear with me. My husband was diagnosed with ALS december 2012. He actually started having symptoms a year and half ago. He is in motorized wheelchair. I do everything thing for him. Feed, bathe, dress,medicate. He is just beggining to have some swallowing issues. I've been through many emotions over the past year and half mostly I'm angry. I'm doing my best to deal with it however as you know it's very difficult to see someone you love grow weaker every day. My question is how will I know when things get really bad. Do all ALS patients have to get PEG tube and vents. Is this something they all face the suffering or do they ever not have to suffer through this horrible disease. If anyone out there ca help please let me know. Thanks to all.

 

[jacquie]

Floryb,
I was diagnosed in July 2012, and am struggling to figure it out too. Are you involved in an ALS support group? I suggest you do so, if possible, as they can direct you to services and assistance. I have found I have to be very proactive and do things on my own, and sometimes, be a bit forceful if people don't feel the sense of urgency. I too am wondering if everyone ends up in the same place, just the journey is different? Maybe someone out there can help us with that information. Do you go to an ALS clinic? They should have a social worker/occupational thereapist who can help you make things easier at home. It looks like the people here are very helpful and encouraging. Blessings,
Jacquie

 

[patgayle]

Your husband and mine are almost in the same situation time wise and I also am doing all the same stuff as you. Where I live there are no clinics or support groups. I try to take it day to day and believe that what ever is coming his way I will find a way to deal with it, it is a different road for every patient and caregiver.

 

[floryb]

Thanks for commenting. We currently go to the VA hospital for his appts. No I really have no support. I'd like to find a support group we live in a small community and there is not a much here unfortunately. He has bee in denial for a long time as well. That does not help me cope any better. He doesn't want to talk about it so I feel very alone here. i am glad i found this sight hopefully i will be able to discuss this with others and they can offer me some insight into this situation. Thank you ill b waiting for replies take care all and know God is with us all.

 

[frankb]

Sorry to learn of your husband's diagnosis. There is seldom any good new about ALS, but if one has to have it, being a veteran somewhat eases the strain. For some reason, 60% of ALS patients have a military background and the VA provides some great help for those stricken with ALS. Hope he has received his 100% disabled classification by now. If not, let us know and more info will follow. Also, a first step is to locate the nearest ALS Chapter. These great people can really help with information that will help you navigate the upcoming months and years, information concerning the sickness, and help that is available which will be of immeasuable help to you. Also, the ALS forum with its multitude of angels provide a treasure trove of information learned from experience and all simply for asking. God Bless.

 

[maryhahnward]

Perhaps you can contact the social worker at the VA. They have a caregiver support network. The VA in Durham has a telephone support group because people come from far and wide to this center.

 

[Pkmado]

I have found it helpful to read the numerous books most by caregivers I have found on Amazon. Everyone progresses differently and many pals react differently and many cals Have many different coping mechanisms. I have learned much fron other cals who have authored their memoirs. While often these books are heartbreaking, I have found the perspective of others helpful. I find comfort that I am not alone in the heartbreak and my husband is not alone in his suffering. My husband Phil prefers not to know in too much detail what is ahead. I feel it is my job to know and guide him into each change in his condition. My husband is a very laid back, patient and accepting man. I draw my courage for the future from him. We are a year and a half in. We feel his case is fairly slow moving. We feel we are somewhat lucky if you can use the word luck in the same sentence as ALS. Keep the faith.

 

[Barbie]

Hi and welcome. you are not alone--we understand. many people who come here to this forum find that just talking about what they are going thru emotionally makes it easier to deal with. feel free to post and comment, you have friends here who are all dealing with the same issues as yours.