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NothingButLove

Distinguished member
Joined
Dec 25, 2016
Messages
106
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
CA
City
Anaheim
Here's a forum I never wanted to join... There's a long version of this story. This is the medium version:

It all started when my wife twisted her ankle in January, 2016. She developed a "dropped foot". I thought the dropped foot was a result of her twisting her ankle. How wrong I was...

In February , she tripped in a parking lot and broke her elbow. This is a 57 year old women who had never broken a bone in her body. She hadn't even seen a doctor in about 10 years.

Just about the time her elbow had healed, in April she fell in the kitchen and broke her hip. After the hip healed, her PCP ordered a ton of "normal" tests: colonoscopy, chest x-rays, mammogram, pap smear, bone density, blood work, etc. She was diagnosed with osteoporosis, low vitamin D and a yeast infection. It finally came time to visit the neurologist to see if my wife would be a good candidate for decompression surgery on her drop foot. The neurologist tapped her joints with a rubber hammer, tested the strength of her limbs and asked if I noticed any "slurring" in her voice. He then ordered a MRI.

On our second visit in early October, we were informed she didn't have a stroke, MS or cancer. He ordered an EMG and nerve conduction test. While my wife was in the lobby making the appointment, the neurologist dropped the "ALS bomb" on me. I told the neurologist he was wrong to which he responded, "I hope so".

I went home and consulted Dr. Google. After reading how long most people take to be diagnosed with ALS, I thought this neurologist was a quack. How could he make this diagnosis from two 15 minute sessions before an EMG and nerve conduction test? It was early October and the EMG was scheduled for November 4th. Over the course of the month of October, I went from "I'm 100% sure she doesn't have ALS" to "Hmmm... perhaps this is due to complications of the hip surgery" to "O' God, please don't let it be ALS". After the EMG, he referred us to the UCI ALS and NMD Center. On November 21, it was official.

My wife's right leg is gone and the left ankle is going. She can still walk short distances with the rollator (not sure how she does it) but it's getting harder every day. Mentally, my wife is super strong. She's got that "it is what it is" attitude.

On the other hand, I'm a complete mess. I'm am constantly thinking about my wife and ALS. To carry on everyday and wear a smile in front of wife is difficult. My wife can say little things that make me feel so sad so quick, it feels like my heart and mind is being sucked into a black hole. The social worker at UCI said the initial shock will wear off and to some degree, she's right. October was worse than November and November was worse than December. Still, my wife and ALS dominate my thoughts every day.

I'm crying as I write this but somehow I always feel a little better after telling this story. I feel drained but better. Merry Christmas and thanks for reading...

Rob
 
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Rob, welcome home. You will find family here to help you through this. You'll find information and support, as well as friendship.

The first few months are the worst. You have described what I went through exactly. Nothing will make it right, but once the initial shock wears off, try to focus on what you do have--the time you do have--instead of what you had before and what you will never have. You must look ahead to plan for your wife's needs, but other than that, live each day in the present. Try to not let this monster steal the time you do have. We had a dear member here who used to say "it is what it is", Acceptance will help you grasp the joy out of the days you have. Grief will always be there, lurking in the shadows, but every moment you can ignore it is a victory. I like to say that I live in educated denial by choice.

Come often and vent. It does help to share. I can't imagine where I would be without this group.

I hope that you are able to find joy in this day. Merry Christmas.

Big hugs.
Becky
 
Rob, My heart breaks for you and your wife. I'm so sorry to welcome you here. ALS is a beast. I can commiserate with you on the part about your wife and ALS being on your mind constantly although in my case it's my 47 year old single brother. ALS seems to take over especially when you first get the news. It does get easier but is still like being on a roller coaster ride mentally. I don't respond much here but I read what people have to say and try to absorb all of the advice especially from those who have gone before us. The people hear are fantastic. So strong. I admire them. Happy Holidays Rob. Spend the day just enjoying your wife's company.
 
Welcome to the dubious honor of our club, Rob. We will support you however we can. Becky is right -- it is so worth coming out of the horror and fear to live fully in the days, abilities and activities that remain.

You and your wife are still the people you were a year ago. So when you hear her say something that knocks you flat, just pick yourself up and walk this path side by side with her as long as she wants you to. Sounds like you are heading in the right direction.

Best,
Laurie
 
I'm so sorry to be welcoming you Rob. I can certainly identify with everything you are feeling. Like others I can assure you the raw emotion does ease a little. I also saw a counsellor regularly and took an antidepressant to stop the constant screaming inside.

You will find a lot of support here.
 
Hi Rob, sorry to meet you here but it is want it is. Through no fault of your wife's or yours, you are starting on a new path of life like the rest of us here. It is surely a path we don't want to be on but we are, I find the best way to walk this path is one day at a time, and with time this path will become a little easier to walk. It doesn't become any easier to take but that is the way it is and no matter how you look at it, it still and will always suck big time but nothing we can do about that. Remember we are all here to support you and your wife in this boat we all share.
Al
 
I am sorry you have to join us. You will continue to find your way and we will try to help.

Does she have/ is she getting afos ( braces) ? I have found mine invaluable for lower leg support
 
Rob, I'm so sorry you have to join this forum but it will help you tremendously. Please feel free to vent, ask questions, come for support.....whatever you need. Of course, your wife is welcome, too.
 
So sorry for your wife's dx. I wish it had been something else. You have found a wonderful place for support.
 
Welcome Rob, my heart goes out to you. I thought I would share with you how I learned to cope with this devastating disease in case it could be of help.Looking back on this ALS journey my husband and I have been on I realize that I was fortunate that my husband presented with respiritory failure. They didn't know what he had at first and I was terrified that he was going to die and when he didn't I was so happy that I still had him with me. The thoughts that I try to focus on are: the person that I married and love is still here no matter what his body can't do, be present in the now and don't think about what loss will be next or how this will end, and try to find some joy and/or thankfulness each day no matter how bad the day is going. I have my moments and sometimes a few days of utter sadness and grief but then try to refocus myself back to enjoy being with my husband in the time we have left.

I will be thinking of you and your wife, Kate
 
Welcome Rob. Reading your post brought me back in time. It was like reading our story right down to the diagnosing process. The first three months were so very stressful for me. Like you, I was falling apart. Everything seemed to set me off. I could not get ALS of my mind. Nothing prepares you for this journey but this forum has saved me so many times.

There is a ton of support and understanding here. It helps to share our fears, ask questions and get one step ahead of this disease. My husband is also very positive.

My thoughts are with you this Christmas. I hope you were able to find some joy. Be kind to yourself, take care of yourself and know that you are not alone with your fears or concerns.
 
Rob, I am so sorry to welcome you here.

Your story bears many similarities to mine, including the sprained ankle and broken elbow. I was fortunate to not have the broken hip, though.

Know you are among friends here who truly understand what you and your wife are going through.

Steve
 
Wow! I want to thank everyone for their support! To ♥ Nuts, Jlynn, ♥ lgelb, ♥ affected, Firefighter58, ♥ Nikki J, ♥ KimT, soonerwife, KateEmerson, ♥ scaredwifetx, and ♥ swalker I send my love. To those who are diagnosed or have lost a loved one, my heart goes out to you. For the caregivers and family members, I will certainly do whatever I can to help. I had a wonderful Christmas. Thank you again!

Rob
 
Hi and welcome Rob, we each travel a similar but different journey, lots of support and live here.
 
Rob, our path to diagnosis was very much like yours. Brian would have been ten years between Dr visits too, but I had harassed him into some check ups wherein everyone marveled at his fabulous health. Now this. The good part is we did not spend a bunch of time in limbo, the tough part I think is the power of the shock factor.

Nikki is spot on with the leg braces/afo's thing. They help so much so if your wife does not have them please look into them. I am very sorry this happened to you, but very glad you have found us. AS Nuts says welcome home.
 
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