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sunnysierra

Active member
Joined
Oct 10, 2015
Messages
60
Reason
CALS
Diagnosis
10/2115
Country
US
State
New Mexico
City
Rodeo
Hello everyone,
My husband received a preliminary diagnosis of ALS last Monday. As you know and remember, the initial shock is overwhelming. It comes at me in waves. I recently had surgery to repair my achilles and remove a huge bone spur on my heel and we went to Tucson where I traded in my splint for a pretty pink cast. We were so excited and happy. Then we went to Chris' appointment on the other side of Tucson with a neurologist. Chris had seen a orthopaedic surgeon last month because he's had twitching in his arm along with atrophy, and weakness in his hand so bad he couldn't start the car with his right hand. Pinched nerve we thought. How naive. His neurologist performed an exam and then had Chris do a nerve conduction test and then the neurologist himself performed the EMG. After he was done he let out a sigh and said he needed to be upfront with us......that Chris has a serious problem with his spine and that he believes it is ALS but still needs to do an MRI and blood test. Well, from reading the forum pages, it sounds like the nerve conduction and EMG are the most important tests, so I am not allowing myself to cling to the hope of some diagnosis that is less devastating. As we were curled up together yesterday evening on the couch I could feel twitching in his left leg. Chris said he couldn't feel any twitching in his leg but I could see it. I have spent days crying and my mind reeling with fear about our future, how will we cope, how will we survive financially, what will our future look like. I waited so long for such a great guy to come along. Our tenth anniversary is in Dec. I feel so robbed of the future we planned. I hate ALS.

I apologize if you think I am jumping the gun by posting here. I also apologize for the wordiness. We go back to Tucson next week for the MRI and blood work. Thank you for reading. Kathleen
 
Kathleen, my heart just breaks for you. It's a very emotional time, and your beloved husband must be so glad you are supporting him...tough for both of you.
Please don't apologise for posting. CALS have a very hard time of it, and you will find so much support and compassion here.
You've probably already found there are a number of different sections to post in, plus a thread dedicated to CALS checking in.
Please let us know how the MRI goes.
God bless, Janelle x
 
Thank you Janelle, I am so glad there is a community here. I have always tried to appreciate the "now" of life. My husband and I always say "I love you" when we talk on the phone or leave for work, because we never know what might happen and we want the last words to always be I love you. I know we will adjust. I look forward to a day without crying. I try to get it all out before he comes home from work but I know he notices the swollen eyes. I'm probably driving him crazy. I will post again after the MRI. Thanks again, Kathleen.
 
I am sorry and I understand about not wanting to get your hopes up. There is still a chance until the Mri and a number of blood tests but it is good to prepare yourselves. If you have been reading here you know we recommend a second opinion most especially if this neurologist was not a neuromuscular specialist. There is an ALS clinic inTucson at U of Arizona. There is also Barrow in Phoenix which likely has more research study opportunities

Please let us know how things go and know we are here for you both
 
I second Nikki's opinion that a second opinion is in order, particularly at an ALS center. I wish you luck and peace in the next couple weeks. We've all been through it and we're here for you.
Hollister
 
Hi Kathleen,

Our hearts are out to you. Hoping for the best on that second opinion.

Take care,
Brad
 
Kathleen, you asked practical questions about finances. Here's a suggestion. Get life insurance prior to a diagnosis.
 
Asking about life insurance was one of the first things we thought of after the news. Chris is the major contributor to our finances and he is concerned about me. Unfortunately, it already says ALS in his medical file, so the insurance broker said we'd never qualify now. On the positive side, though, his job has a life insurance policy that is portable, so all we'd have to do is cover the premium for the months between him not working and before long term disability would kick in. It isn't a large policy, but enough to pay off the house. I am grateful it is there to give us peace of mind. Thank you for suggesting the idea as it could have easily been overlooked during this time.
 
Welcome, Kathleen. We will help you however we can.

Best,
Laurie
 
Hi Kathleen I am sorry you have to be here but this is the place to be for guidance and support. Your post is a lot like our story. We have been married 15 years. We both had failed relationships before we met each other but were able to find each other and I feel so saddened by all of this. A second opinion is very important Contacting the ALS Association is very helpful. we contacted them a week before the second opinion and once we got it they came right out. They will help you with support, questions and can gives you tons of advise as well as equipment. Of course everyone here is amazing and have been through all the emotions and issues. You are never judged, don't worry about what or how much you say and everyone understands how you feeling. I agree with you I hate ALS!
 
Kathleen I am sorry that you are also going through this difficult time. My husband Tim and I had only been married 1 year when he got his diagnosis, and we were living apart while his permanent residence card for Canada came in so that he could work. It has been difficult, but we have had so many blessings along the way. We do well, and get to a point where it all feels normal when he loses the use of one more limb or muscle. He is now a quad, and breaths using a sip & puff ventilator during the day and a bipap during the night. We have a lot of adventures out doors with the help of friends, and a peace and joy that we can attribute to our faith. This forum is amazing and a great place to get advise or just to vent without judgement. Welcome.

Paulette
 
We are still waiting for the MRI appointment. Called and left a message but no word yet. Chris seems to be in a fog, wanting to sleep all day, not talking (to anybody, including me) and just looking so bleak. I understand he will work through this in his own way and time. Trying to give him time and space. Any advice? He is a friendly guy and everyone really likes him but he doesn't really have any close friends other than me. I wish he'd talk to someone. He did say he's thinking about using his employee assistance program to see a counselor. I manage to control my crying except when talking to my friends. It pains him to see me upset, says he feels so helpless because he can't change anything. So, no talking to friends when he is home.

Thank you everyone for your wonderful words and support. I really appreciate it. Kathleen
 
Kathleen, it seems that lots of our PAls have trouble talking about it at first- even with family! (And let's face it, we gals usually deal best by talking through life's challenges! So be sure you keep your girlfriends close- it would be twice as hard as a caretaker if you didn't have that support!).
Glad he is considering a counselor- that's a great first step. Assume he is not a vet?
Something that a psychologist said to him (aimed at me!) was HE gets to call the shots because there are so few choices, control they have in this. So you may not always agree with his decisions but, as a CAL it is our job to support them. Not easy but---- for me the HARDEST was he chose not to have a peg tube until it was too late, and he insisted on shaving with a safety razor instead of electric when his hands were so bad, he often cut himself. Welcome to the difficult world of ALS. Still hoping for a different second opinion for him. Hugs. Donna
 
We went to Tucson yesterday for the MRI. The MRI did not show anything unusual, so we are now dealing with the official diagnosis of ALS. The neuro is referring us to the ALS clinic that is part of U of AZ Med Center. I'm sorry we are part of the ALS club, but so grateful for the forum members and their support. Oddly, it is a bit of a relief knowing for sure. Now we know what we're dealing with and can proceed accordingly. Chris will continue to work while he can, maybe see if reduced hours are an option. He teaches computer classes for a local college at the AZ State Prison. Meanwhile we have a little bit of time to simplify our lives and find homes for the horses. I am hoping I can keep one horse and our mini donkey. Horseback riding has been my passion and is a big stress reducer for me. I am trying to take it day by day and not jump to visions of the future. I myself have been dealing with Major Depressive Disorder since my late teens. Now, at 48, I take medication and do just fine. My doc and I even discussed the possibility of lowering my doses after I am out of my cast and can rehab my achilles because then I can exercise. Now I don't dare try.....Chris needs me at my very best. Any helpful suggestions, ideas, or guidance for the next steps on our journey will be much appreciated. Thank you.
 
Very very sorry. Going to the ALS clinic is a good next step. Simplifying, downsizing and finding a place that will work for the long haul sound good. You should start reading the relevant stickies if you have not already. They are at the top of the general discussion section in approximate order of need although as soon as you can read through all the ones that are relevant for you.

Also ask questions and post in the CALS roll call. There is a wonderful CALS group and it has people who have walked this path. You can also post about your struggles as a CALS in that section. General questions can go there or in the general discussion. And utilize search. There is a lot of information there from several generations of PALS/CALS
 
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