Just changed from being diagnosed to diagnosed

[Lynk]

Hello,
Yesterday I saw Dr Boylen at Mayo Jacksonville and he made the call that the doctor in May was not ready to make. I think I am relatively early in the progression, but I have declined since May and now have regular spasms in my hand and not much use of my forefinger. Arm is very tired after a day of clicking the mouse. I have felt a few fasciculations in my left hand in the last week, but otherwise it is still functional.

So. I have been living a split life trying to act as if I didn't have it and also as if I did...although I really thought this was ALS it was a strange feeling to say the least to have it called. I'm in shock but also relieved in a weird way because now I can get on with figuring things out.

I'm most worried about my 19 year old daughter. She was not going there with this until she had to and was shocked when it became real and now she is shutting me out, doesn't want to talk, etc. I have talked to her best friends mother so I hope she can help her.

I am going to retire in September and I feel lucky that I have just reached retirement age so it can all go through smoothly. I love my job and would have stayed for a long time. My next challenge is telling the students and faculty in my program. September is so soon.

Thanks to everyone here. It is a strange trip we're on.
Lyn

 

[Atsugi]

Hi Lyn. Sorry about the diagnosis.

Sometimes even our most loving family, like your daughter, pulls away at the shock of it all. Their mind can't think of the right way to handle the situation, so they ignore it and leave us to deal with it alone. That's something to consider before telling your faculty friends. I wrote a blog on this site about that.

Next time you're talking to Social Security, remind them that they have TERI procedures for fast moving terminal diseases. It gives your application instant priority. Also, there is a Sticky on Social Security in the General Discussion forum.

Your job may have group life insurance with an option to "convert" to an individual policy--with no medical questions asked. That's what we had. So we maxed out the FERS insurance to its highest level possible, then converted to an individual policy with another affiliated company that FERS referred us to.

Sounds like you've found it early. Good. It seems fairly slow moving, so far. Hopefully your husband well take the initiative and want to learn how to care for you. Maybe you could invite him to log in here.

Feel free to post, share, ask, or rant here. We're all in this together.

--Mike

 

[patrick123]

So sorry to hear the news. You are in a good group people.

 

[Nuts]

Lyn, so sorry to have to welcome you to our family. The emotional rollercoaster is aweful, but posting here helps. Be kind to yourself--even your clicking arm! It's sometimes hard to convince PALS that if they overuse a muscle and make it very tired, they speed things up.

 

[Nikki J]

Sorry to hear this. I can understand though the mixed feelings. At least now you can plan better. Plans you never wanted to make though!

 

[lgelb]

Hi, Lyn, welcome to the dubious honor of joining our club. For your tired arms, get arm supports that attach to a desk or table, called ErgoRest articulating arm supports, available on azn. They come in short and long versions, bend to the angles you need and will help you type. Resting your arms on top of a warm but not hot heating pad after long sessions might be good, too.

It is a lot for a late teen to process, more so than some younger ages even. She will need time. Anyway, welcome.

--Laurie

 

[chally]

hey lyn, WELCOME! now that your hear stick with us, post often, ask questions, add your 2 cents this is the best support. you will learn more here then even at clinic, so don't be shy join in. love ya chally

 

[Lynk]

Thanks for the advice. I will look into the arm rest. Is this anything that you can get help with through ALS Assn? They cost $50 -70 which is probably worth it.

Also Mike..I read your blog about how people can't deal with this...I get it...my father killed himself when I was 21 and when people found out I had to take care of their emotions. At my work now I am in a very close-knit dept. and kind of a glue that holds stuff together around here. They just gave me a surprise birthday party with a cake that had written on it the acronym of our dept, "MOB" = LYN. It was very moving. I can't imagine not telling people why I am abruptly leaving, so I will reveal and deal with it whatever the reactions are. I don't expect that they will be very involved in my life after I leave though. The world keeps turning and grants must be written. In my home life I am hoping that people don't abandon us. My husband is an extrovert so I think he will keep the contacts going. I am an introvert so I can relate to your feelings. I am glad you are still involved here to share your abundant wisdom and perspective.

I am going to a clinic on August 18. I have been impressed with the support and outreach that has come to me in just a day or two after feeling so out there and alone, deep down knowing this was ALS but not being able to access services or experts.

 

[Atsugi]

Good luck, Lyn.

One of the most important motivators in life is HOPE. We hope to make good grades, get a good job, create a good family, etc. But when hope for life is lost, we must find something else to hope for, or we'll get terribly depressed. My PALS Krissy hoped her diagnosis would not burden the family. I hoped my children could still have a happy, safe and secure life. We all must find something to hope for, I think. Just my opinion.

 

[Janie H]

Welcome Lyn! This is a great place for questions and venting.

Janie

 

[affected]

Sorry to welcome you here Lyn. I hope your extrovert husband keep lots of people around you as it's too easy to isolate yourself.

 

[notBrad]

Hi Lyn,

So very sorry to have to welcome you to this club. BUT, outside of that pesky ALS thing it is a wonderful group to be involved with.

There are actual upsides IMO to having received the diagnosis. One, we know what we are dealing with now and can put plans in place to deal with the various things coming down the pipeline. Two (and this is the bigger one for me), we *know* much more than most folks that our time is definitely limited and can plan & live accordingly. We are also spared a a painful protracted death ala' weeks in chemo racked by pain from an ultimately incurable cancer. And finally, because we don't lose sensory capabilities we can always touch and feel - and feel the touch of - our loved ones, pets, etc...

So yeah, it majorly sucks to have this disease but as far as terminal diseases go... It's not the worst of the lot IMO.

Take care and focus on fun and what you can do,
Brad