Just Diagnosed with ALS

[markep55]

I'm sure that what I am experiencing-shock, anxiety, sadness and depression are not unusual for those who suffer from the same disease. In a couple of weeks I'll be going to an ALS-endorsed clinic in New Britain, CT. My last hope, I guess, is that the physicians there will reach a different diagnosis than horrific ALS.
Am I being unrealistically hopeful and should therefore face facts that there's no hope for my longevity? I'm of course frightened but I also suffer severe anxiety, tension and profound depression when I think of my wife, children and other family members who I will leave behind. I am not a religious person so I can't use the notion of god in my emotional ability to cope. Thank you most sincerely for reading my post. Any advice is warmly welcomed.
Mark

 

[adrivtham]

Hi Mark,
First of all a big hug to you and your family. This illness is terribly difficult and you need family and friends more than ever.
My husband was diagnosed in February of last year and it has been a roller coaster of emotions that we still go thru.
My only advise is to get things in order now that you can take decisions like home modifications and finances.
My husbands progression is fast and one thing I regret is that we didn't take measures soon so we could have enjoy more time together.
Is always good to come here because there is a lot good and useful information.
Adriana

 

[markep55]

Thank you, Andrea. May I ask if your husband received a second opinion. Regards to you and your husband.

 

[Nikki J]

Hi I am very sorry to welcome you. Almost everyone gets a second opinion and a lot of us get our care from an ALS clinic. Especially early on it can be helpful as they know resources and equipment and clinical trials.

How likely is it they will overturn your diagnosis? It happens but the likelihood varies a lot depending on circumstances Some neurologists are better than others- some presentations are more clear cut.

It is normal to be shocked grieved and scared. You will come out the other side. Progression varies widely. Some die fast but others live for years and years. You probably can't tell yet what your progression might be.

You will find a balance between living each moment and preparing for the future. You will find friends and support here.

If you are a vet you are entitled to benefits because of that.

Take a look at the stories of hope subforum. There are some threads there of adventures some of our members have undertaken- and not just right after diagnosis

Moving this to the Newly diagnosed forum since that is your subject

 

[KimT]

Hi Mark,
I'm so sorry you find yourself here. Do read the stories of hope and know that we are here for you. My life has changed so much and is still changing. The stickies are very helpful. They helped me get SSDI right away and everyone was so nice in answering my questions.

 

[Vincent]

Sorry to meet you here Mark. This disease presents you with some really scary things in your future. But that is what you have to focus on; it's all in the future. This is not all happening today. Having said that, it is important to get your ducks in a row, healthcare proxy, financial stuff, a will. It's not fun, but if you do it now, you don't have to worry about it later. I'd also recommend doing voice banking while your voice is still strong. Overall, focus on today, it's all we really have. By way of hope, I'm 2 1/2 years post diagnosis and still on my feet and getting back into wood carving. Not everyone has fast progression.
Vincent

 

[adrivtham]

My husband's ALS is familial. I started suspecting when he started dragging his foot. So we went to a neurologist and the twitching, the muscle loss and then the EMG confirmed it was ALS.
He has bulbar onset. I think this is the hardest thing I had to live but my husband never complains, he has a smile in his face and I feel I have to do everything I can to keep him in the best way I can.
Big Hug
Adriana

 

[lgelb]

Welcome, Mark. As others have said, the future is not written and disease progression varies for everyone. It's normal to be anxious and depressed in thinking of your family going on without you, but we all die. Give yourself time to adjust if you hear a confirmation in New Britain, and after that you will begin walking past the boulders of shock to the activities and people that with appropriate planning and care, you can enjoy for, likely, years to come.

Best,
Laurie

 

[markep55]

Thank you for such wonderful support. Like others, my anxiety and fear are due to longevity and quality of life as the disease progresses. I'm amazed that so many on this forum have effectively composed their lives around this crushing experience. Tough people. Right now I'm too depressed to ever believe I will actually enjoy whatever days remain to me. My profoundest wishes for the future.

 

[swalker]

Very sorry to welcome you here.

You have suffered quite a shock. It takes time to adjust to the new reality.

One thought that has helped me is that since this is a progressive disease, I have no time to waste feeling sorry for myself or worrying about the future.

Instead, I focus on trying to get the most out of each day. Some days are better than others, but even on my bad days I try to refocus my thoughts and actions so that I can get the most out of the day.

I find joy in trying to be of service to others. I serve on a non profit board and am active in my church. I offer computer support to those around me. When I am out and about on my adventures I try to interact with others and share my joy of life with them.

I have found that things matter much less to me now and people matter so much more.

Steve

 

[scaredwifetx]

Mark, so sorry to welcome you here. My husband was diagnosed in August of 2015, It was very tough the first couple of months. Steve did get over the anger and depression. We do our best to live each day by not counting each day.

The quality of your life can be managed and the clinic, the ALS Association, this forum and your family will all be of great support. Give yourself some time to get past the shock and despair. You can count on everyone here to support you, guide you and help with any questions you may have. This group is wonderful and have made such a difference for my husband and I.

My thoughts are with you and your family.

 

[jayswife]

Hi Mark,
My husband has ALS and we live in the next town over from you. We are very familiar with the Hospital for Special Care in New Britain. I know this is a very scary time for you and your loved ones. My husband was diagnosed in March of 2014. Feel free to ask any questions. This is a great forum with very helpful and kind people.
Amy

 

[markep55]

Hi Amy:
I live in Trumbull,CT. with my wife and daughter. Thank you so much for your concern. At this point my primary questions about your husband is the progression of his disease and how he (and you) cope. Thank you so very much for your support and information. I don't ever remember feeling this depressed and stunned, not only for myself but for my loved ones.
Warm regards,
Mark

 

[jayswife]

Hi Mark,
I'm so happy to hear back from you. I'll answer as best as I can and will be completely truthful. My husband experienced weakness in his right thumb. He used to lift weights and noticed that his right arm was becoming weak. After about a year of seeing doctors he was finally diagnosed with ALS in March of 2014. December 31, 2015 was his last day working. At this time he had little use of his right arm and his left arm was becoming weak and his hips felt tight. He was still driving a bit but stopped in February of 2015. By the summer of 2015 he was in a wheel chair. He could still walk a bit but not too much. Also during the summer, my wonderful job suggested that I work from home in the afternoons since we found a caregiver for the morning. I work in Shelton which is 10 mins from our home so I work in the office in the morning and then take my lunch to drive home and care for him and work at the same time. At this point he has a bit of strength in his legs which helps so I can still lift him up. He has a pain and is very uncomfortable especially at night. I think I'm the only one that can understand his speech now. He has a son from a first marriage but we don't see him often. My son is at Uconn now but he's a great help when he's home. My husband, Jay, gets very depressed and is now on an anti-depressant and I'm hoping it will work soon. I know he holds a lot in but he does cry a few times a week which he rarely ever did before. I just hold him close and tell him I'm here with and will always be. We try our best but there are days when he doesn't want to speak to me and I get tired of doing everything. But that's expected. This is not an easy road. But we do enjoy our time together. It's not the same but we both agree that we still want to make memories. We still laugh together but we do cry together. I'm always told that I'm so strong but i don't always feel it. I'm tired. I look in the mirror and see dark circles under my eyes and I wear sweatpants almost every single day now and feel like a complete mess. I haven't slept thru the night in close to a year now. I can barely get out of bed to shower in the morning because I feel so sad but then I walk in the living room and wake him up for a tube feeding and he smiles at me and tells I'm beautiful. We keep each other going.

I know this is so hard for you. I can't tell you how to feel. I can just say that I hope you take some time now to enjoy the things that you love to do. Get out as much as you can. Be honest and don't hold your feelings in. Even if you think that others may not want to hear how you're feeling you have to let it out. To someone.

I would love to hear from you again and if your wife ever wants to talk - I'm here.

Hugs to the both of you.
Amy

 

[markep55]

Dear Amy:
What a wonderfully sensitive and descrptive overview of your huband's ALS progression. You are indeed a very strong woman and your husband mirrors that quality. I just returned from visiting with my best friends, a couple I've known for over 30 years. I cried my eyes out and now feel exhausted. I'll be 62 in a few days so I'm no "spring chicken," but I still can't believe how little time I probably have left. I have three grown children (33, 32, 29) from my first marriage and, believe it or not, a twelve year old girl with my wife. I'm devastated that I probably won't be around for even her high school graduation. I just hope I can ultimately become as emotionally strong as you and your husband. I will indeed let my wife know about your gracious offer. I hope today has so far been a good one for you.
With much appreciation,
Mark
P.S. please don't hesitate to stay in touch.