Newly diagnosed and devasted

[Firefly]

Hi everyone,

I am newly diagnosed (12-29-15) with ALS. Since my dx, I've been devastated.
My mom passed away in August and I was in a pretty deep depression over that when I got my dx a couple month later. I feel like I was hit over the head with a sledgehammer, and that wasn't enough so I then got hit with a 2x4.

The following is my story, (so far). I am an only child and was taking care of my mom who had dementia. It was very, very stressful and sad as she was a huge life part of my life.

I thought even though she was declining, (she still recognized me), she would be
with me for many years. She had a fatal heart attack Aug 2015 in the adult foster care she had just moved into.

One month prior to that (July 2015), I was at work and had a hard time saying heart monitor, (I worked in Cardiology). After that, I started having difficulty with many words. My friends thought it was the phone, or that I was imagining things.

I first saw my PCP who thought it was either dry mouth or some kind of drug interaction. I started using Bactine products for dry mouth and went to the dentist to see if I had some kind of mouth fungus.

Finally, my best friend flew in to to stay with me in September to help me plan
a memorial for my mom. It was then she could see I was having difficulty with my speech.

I made another appointment to see my PCP and took her with me. She convinced him she also thought something was wrong.

Fast forward, I saw a Neurologist, had a positive EMG/NCV. Of course process of elimination first, i.e. MRI, which I did under anesthesia because I am so claustrophobic, Myasthenia gravis blood test, Lyme disease, copper test etc. My MRI was normal.

I had a second opinion with another Neurologist at a different hospital. She also thinks it's ALS.

At this time, it is my speech and breathing that is mostly compromised. My swallowing is okay, but drinking liquids is a little difficult. I have some weakness in my right arm and hand, and it feels like my left hand maybe a little weaker but that might be my imagination.

I will eventually quit my job, I am currently on short term disability. I've been to two support group meetings; which are very helpful but they're only once per month. I've am also seeing a therapist.

I know it is new, so I am going through the grieving process, but when I think about how this journey will end I feel devastated. I've seen people who have this dreadful disease, who smile and seem content, I am hoping I can reach that place but right now it feels impossible.

Thank you for letting me share my story. I wish everyone peace and love.

 

[lgelb]

Hi, Firefly,
Sorry that you have found yourself here, but glad you have found us.

I know it is hard to believe that you will smile again and mean it, but you will. Your life is not over. Your mom would want you to live how you can while you can; thank you for taking care of her.

Now you must take care of yourself. Since your speech and breathing have been affected first, you might want to put AAC apps and BiPAP first on your list. As I'm sure you know, both OHSU and Providence have Portland ALS clinics. You might want to check them both out and see which one clicks best, insurance permitting.

You have at least one awesome friend, and I'm sure there are others. This is a good time to take stock of your resources, do some planning, sign some documents -- but not every day. Spring is coming! We'll be here whenever something comes up.

Best,
Laurie

 

[krnNdug]

Sorry to meet you here. I have been away from the forum for a while, but you will get excellent support and advice from others here. I was diagnosed 2 years ago and am currently in a clinical trial for Tirasemtiv phase 3.

My late father-in-law had Alzheimers...that is such a hard thing to see a loved one got thru. I know the same can be said about ALS.

ALS is a very difficult & challenging disease. I am naturally a positive guy so I am just very thankful for what I have - family, friends, faith and great doctors, but I know not everyone is, or can be, positive. I would just encourage you to be a part of a community of family and/or friends.

We just had a guy move down here from Oregon join our support group. I also know that some people get something out of the group and some can't go at all. ALS is individual in so many aspects, so just know people are here to walk with you.

Feel free to reach out if you have any questions or suggestions. Many new people bring great advice as well as some of the older, established people on this forum.

Doug

 

[KimT]

Dear Firefly,

I know that it is a lot to wrap your head around and I understand the feeling of devastation. Please do some kind things for yourself like massage therapy, getting a pedicure, or spending time with someone you love. I'm so sorry about your mom. Please know that you are in my prayers and that this forum is a safe place with many selfless people willing to help. I'm still overwhelmed with the time and effort people put in here.....especially the people who have lost loved ones to ALS but still come here every day to help the rest of us.

 

[Firefly]

Thank you Kim.
I had a facial yesterday; it was wonderful!

 

[Firefly]

Thank you Doug.

 

[scaredwifetx]

Hi Firefly, my heart and thoughts are with you. My mother suffered with mental disease and lived with me for the past four years. She passed away a little over a week ago. I understand your grief and then to be hit with this diagnosis so soon afterwards. I often find myself unable to grasp how I will deal with my husband's ALS. The truth is none of us have the answers as to why we have to deal with so much pain and grief. You will grieve and you will get angry but you will always have support when you reach out here. The amazing people on here will guide and support you.

Take time to do whatever you can for yourself, spend time with your friends, take care of your health but most importantly understand that you do have the present and you need to try and live each day by not counting each day. The past few months have taught me to cherish my life no matter how tough it is. With a tough spirit and hope you can handle the challenges thrown at you a lot better.

I re-read your post a few times before responding because it has been a tough couple of weeks for me. I can say that I can tell that you are an awesome person who is filled with love, hope and a wonderful attitude. There will be a lot of challenges but I feel that you will be a great inspiration and example to many of us.

Hugs and lots of support coming your way!

 

[Firefly]

Thank you so very much for your kind words.

 

[sleepy]

That's not fair. Not that this is fair for anyone.

Don't look to far ahead. Find your village. Welcome them. Be kind to yourself.

 

[Nuts]

Firefly, it saddens me each time I read a new story here. Welcome--you've found a wonderful place full of people who understand and will support you through this journey.

I think that the contentment you see in other PALS and CALS is acceptance and the desire to enjoy the time left, rather than let it be stolen too by the fear of what's to come. Our friend Tillie says their are problems and there are facts. A problem can be fixed, so you worry about it. A fact you adjust to. Acceptance does not come quickly or easily, but when it does, it is possible to then to enjoy every possible reason to smile, as worrying will do nothing but rob you of time you can't get back.

Doug is right--ALS is an individual disease. Everyone is different, and everyone copes differently. I am glad for you that you have such a wonderful friend and hope that she stays with you (even from across the miles).

Again, welcome to the family.
Becky

 

[TheBean]

I am sorry for your diagnosis. I am also sorry that you lost your mom. That must have been so difficult dealing with her illness and then losing her.

I was diagnosed 6/2015, and at that time I was dealing with slurred words and swallowing trouble. Now 8 months later I can no longer speak; My tongue no longer moves. It's strange to feel like you are sticking your tongue out all the way and it doesn't go past your lips. Like you I am having swallowing and breathing issues. Legs are weak; I fall a lot. And my left hard lost dexterity about four months ago and can feel it moving to the right hand.

Let's support each other. I applaud you for going to support group meetings. My doctor has been after me about going. That is way out of my comfort zone. I have read many wonderful things about the support and information your can find here in this forum.

Have you had a speech generating device offered to you? Has your doctor referred you to palliative care (another layer of care and support). I'm sorry you're going through this; that we are all going through this. It's scary! I had a really hard time after getting that firm diagnosis. I think I cried everyday, several times a day from June to January worrying about my kids. i have been dealing with it since 2013 but didn't want to get that diagnosis. But, in those couple of years I lost 103 pounds and trying to enjoy my skinny--first time in 35 years!! Have to pull out some sort of silver lining, right? I think friends and family try to understand but they don't realky get it. People here get it. hang in there.
~hugs to you

 

[Firefly]

Thank you Sleepy.
I wish everyone the very best.
This one mean disease.
Sending hugs.

 

[Firefly]

Laurie,

Thank you for taking the time to respond.
You're right about my mom, in addition I'm
Thankful this happened after she passed.
As the shock wears off, very, very slowly I am
taking stock of all I have to be thankful for.
I have about 8 girlfriends who are all
chomping at the bit to help in some way.
At this point I just want to enjoy their
Company.

Spring came to Portland today, so I took a walk had lunch
with a friend and even did a little gardening.

I suppose once I come to an acceptance
I'll feel better.

Everyone on this forum is amazing!
Thank you.

 

[Firefly]

Hi The Bean,

(That's funny typing that). Lol.

Anyway, your reply really resonated with me. It sounds like we both started with a lot of the same symptoms.

I still can't believe my PCP thought it was dry mouth and it ended up being ALS!

I didn't really know what ALS was. I do now!

Are you using any type of voice augmentation? A really nice gal from the ALS org came out and went over voice banking with me. I have an appointment in April to see a speech therapist. I hope I can still talk by then. I also started neudexta a week ago for speech and swallowing. Have you tried it?

Congrats on your weight loss! That's amazing and is definitely a silver lining. You should be very proud of yourself.

Feel free to respond back anytime to chat.

Have a wonderful upcoming weekend.

Hugs.