Newly Diagnosed Husband

[LilBit]

Thank you for being here. We were Diagnosed Christmas 2015. We are new to all of this. He has a hard time coping due to living a productive life before. I am having a hard time coping, since he is not able to cope. Watching him Deteriorate is the worse thing of this nasty disease. I need coping advice for the both of us, and whatever advice to the new diagnosis. Reading all I can about it. Has others been diagnosed with PTSD to go along with the ALS? Any words are better than what we have right now. Thanks in advance.

 

[lgelb]

Very sorry to hear about your husband(?), LB, and welcome to our ranks. Our usual advice for the loss of activities is to try to find ways to experience them in some other form. What does he miss the most? Ideally, instead of just watching him deteriorate, you can help him live as well.

I take it the PTSD predates the ALS? Is he getting help for that specifically?

Best,
Laurie

 

[swalker]

I am so very sorry to welcome you here, but welcome nonetheless.

This is a wonderful community of amazingly caring and helpful people.

I think everyone has to deal with this in their own way. We all have different personalities and characteristics. What works for me might help or might not. I will share with you my perspective and perhaps you will find some value in that.

Many years before diagnosis I had accepted that life is temporary. We are all going to die some day. I did a pretty good job of pushing hard and getting the most out of most days. This served me well and I had a very satisfying life.

Then I started having some health problems and was eventually presented with my diagnosis. That was a pretty big shock, but I soon came to realize that I had two basic options. This first was to feel sorry for myself, wallow in my self pity, and find ways to just hang on until the end. The other was to continue on the path that I had always followed - to live each day to its fullest and get the most out of life.

Over a period of several months I developed a renewed focus on following the second path. I still have a very fulfilling life. I don't' feel sorry for myself at all. I know I am blessed in so many ways. I do try to get the most out of every day, though I know that sometimes the "most" is pretty limited. That is OK. I seek out ways to help others. I serve on a nonprofit board. I am active in church. All my family and friends know I am available for computer support. Whatever I can do, I do.

My motto is that I don't know if I can do something until I try to do it. This is tempered by avoiding putting myself in positions where injury could result (typically from falling).

We have travelled extensively over the last 2 years. The trips have been very draining but also very wonderful. I have had amazing experiences since diagnosis and look forward the the adventures that lie in my future.

Those adventures are now experienced from a wheelchair, but so what? In my wheelchair I can "hike" farther and faster than my wife or any of my friends.

A key aspect to getting the most out of life is embracing adaptive equipment and tools. I bought new knives with handles I could grasp so I could still cook. We bought a trailer for camping because I can no longer practically camp with a tent (boy, do I miss tent camping). We have a wheelchair van to haul the wheelchairs around. I bought a four wheel drive wheelchair so I can be outside in our snowy winters and can do dirt trails and roads in the summer. I ski on a biski.

Everyone is different and everyone will need to handle this in their own way. Perhaps by sharing my outlook I can help your PALS to get the most out of the days ahead.

Steve

 

[soonerwife]

So sorry to hear about your family member's dx. It is a hard pill to swallow. Keep putting one foot in front of the other. You have found a great place for support.

 

[scaredwifetx]

Another warm welcome. Take some time to get over the shock and give him some time. Its so very hard in the beginning to grasp this disease. Give your local ALS Association a call. They are very helpful. For support and advice you cant beat this forum. Hugs and warm thoughts coming your way.

 

[Firefighter58]

It is unfair that we have to meet here but that is just the way it is, nothing we can do about that. The thing now is to live life the best you can, get up in the morning with a smile and carry it all day. This is not the life we want but it is the life we have, enjoy it as much as you can.
Al

 

[LilBit]

Thank you so much all. To answer a few questions My husband has always worked to provide for his family with multiple jobs. He feels as though he is not a man now with ALS due to not being able to work. He keeps fighting to live without a wheelchair. But, the reality of needing to depend on it is overwhelming to him. We had to leave our home, and move back to the place we grew up in. He is not dealing with this very well either. The only reasoning we had to move was due to no income waiting on disability.
ALS is definitely a challenge. I know it will take time to except these diagnosis. Some days are hard to convince him that we can find positives. When things are not functioning properly on his body becomes more negativity to this new life of change. Just hard for me being his wife and understanding what he is dealing with and how to help him cope when these things are happening. I know we have a long road. ANY advice is more than what we have right now. I do appreciate the comments and the love surrounded here in this group. I THANK YOU from the bottom of my heart.

 

[scaredwifetx]

LilBit, It is so very hard one everyone and accepting the disease is almost impossible for the PALS. I am so sorry that you had to move and everything you are going through. I do hope you have some support. Do know that we are always here for you. Be it advice or just putting your thoughts out there. Big Ole Texas Hug~

 

[Firefighter58]

Hi Lilbit
You will learn to cope, it is a hard slow process but you will reach a certain level of acceptance and be able to live a somewhat normal life. We have all come from mostly the same life style, hard working some at more then one job and all planing for the future and maybe retirement, then all of a sudden it is all taken away. Now we can sit and cry for the rest of our lives or we can say the hell with you ALS and decide how we want to live our life and then do it. We may only be human and have ALS but we can still control most of our lives if we want. It is hard right now Lilbit but it will get better with time, not perfect but then it never was perfect. Good luck and never give up.
Al

 

[Bexlil]

I am so sorry. My husband was also diagnosed in December 2015. By the time he was diagnosed he had lost the ability to speak and had to retire from teaching. He had, and still has, a lot of anger. It has been extremely hard to accept the fact that at 53 years old his life was going to end. We have two teenagers, and this disease is especially hard on them.
All I can say is to take one day at a time and enjoy hat time you have left with him. After my husband was diagnosed we took a family trip to Europe with the family. I'm so glad we did because he will never be able to go on another trip. Unfortunately he has a rapidly progressive form, and we don't know how much time is left.
So, as I said enjoy life while you still have it. Anger is part of the process. Let him be angry. This disease is devastating.
Also, don't be afraid to rely on your friends and family who want to help. You will need the support of others.

You will get through this.

 

[frankb]

Sorry, Lilbit, for the diagnosis. You mentioned something about PTSD. Is your hubby a veteran? If so, hopefully he has processed his ALS diagnosis with the VA since the benefits are beyond compare. Is your local ALS Association any benefit to you? They were very valuable to us in helping to develop a mindset regarding my life with ALS and helping us cope with this dreadful disease.

 

[starente15]

I'm sorry to welcome you to the group. You'll find a lot of support and advice here.

 

[LilBit]

Thank you. No, Frank he isn't a Veteran. He was diagnosed with PTSD due to him passing away and being in a coma the doctors say. I appreciate the info and in hopes that whomever may cross this has the information found new to them and is helpful.

 

[LilBit]

Bexlil thank you so much for your story. I want to say I am sorry as well. Yes, the anger is..... Firefighter I appreciate your words as well. Once we get through this part of things I am hoping for that attitude. I appreciate all of you for kind words. I do not know where I would be without this group. I have a new concern and it is confusion all the time and how to help with this. He has anxiety about riding in a car when he was a driver most of his life, anxiety around people when he was definitely a people person prior. I am worried with him staying in the house 24-7 for months at a time, now worried about the confusion. I am using google to try to to understand what he is going through, what to do when it happens... I am trying to learn all I can.

 

[affected]

lilbit I'm sorry to welcome you here.

I am just a little confused about a couple of things and want to help you if you don't mind answering a couple of questions so I can help better.

Your profile says he was diagnosed Dec 2015, so that's 14 months ago? I'm asking because I thought maybe you meant Dec 2016 if he is newly diagnosed?

I also want to ask what you mean about him 'passing away and being in a coma'. Can you tell us a little about what happened and when?

Anxiety is really common, and it may be related to breathing issues or to him feeling embarrassed about what the disease is doing to him. Do you know what his anxiety is about? Does he talk to you about it?

Some PALS also have brain involvement which is called FTD - fronto-temporal degeneration. You say he has some anxiety and confusion - maybe you could describe all this a little more too?

The more you can tell us, the easier for us to understand what is happening and so support you.