Just diagnosed

[mikkiedd]

Hello. I am a bit nervous. I am 37 and just got out of ICU, a visit to JH and a diagnosis of MND all within this week. A bit scared...not sure what to make of all of this and was wondering if anyone had any words of advice? Any and all would be appreciated.

 

[Steven B]

I guess it is ok to be nervous. I was diagnosed 4 days ago then joined this very educational and wonderfully friendly site with a lot of beautifull people that would love to help. I have not told anyone but I had a good cry the morning after

 

[twinmommie72]

I'm 38 and are in the same ALS boat. There are so many helpful people here. Whatever questions, concerns or comments you have will be welcomed with open arms. Hugs

 

[KC2U2]

mikkieed,

I am so sorry you have a reason to be here with us. WOW! These first few days and weeks are so crazy, you'll experience the wide range of emotions- fear, anger, confusion, maybe even depression. Let yourself experience these, they're natural human responses, but be careful not to dwell in any of them.

Next the practical stuff> contact the ALS Association in your area, they will be able to provide a lot of information, support and other things you'll need. Also contact MDA they are another valuable resource.

We are here to offer our support and answer any questions you have. I'll be praying for you.

 

[Miss]

Take a breath, a deep breath. We are coming up on a year since my husband was diagnosed. It does get better. The panicky feeling does go away. Like KC2U2 says, there are so many people on this site ready willing and able to help you.

 

[notme]

Most states have an als organization. I've read several posts of folks here that are starting to do word banks of their voice so they can communicate with their loved ones in their own voice.

There is a wealth of information on the web about this disease--try to stick with places like this--where there are others that are going through or have gone through what you're facing.

Any time someone is diagnosed with a condition like this, the states of grief are entirely normal. It helps to have people you can talk to, definitely.

You don't say if you started with bulbar or non-bulbar. It's a hideous diagnosis--but don't look at the stats--everyone is different. Steve Hawking has been living with this for 40 years, I believe.

As someone else said, let yourself feel and process. I'm sure at this point you're just overwhelmed. If you don't have a doctor that specializes in ALS, I'd recommend finding one.

Technology has made quality of life a LOT better! There are tons of clinical trials and new research, too. Prayers are with you.

 

[Chris_b]

Hi Mikkiedd
Sorry you have to be here. It is tough when you find out you have als but it does get easier to get your head round it all as time goes on. Take each day as it comes and dont be afraid to ask for help and advice, also try to be as positive as you can be.

Chris

 

[CoachMeg]

Sorry to see another new face in the group. My husband is 44 and was diagnosed in February. You have received wonderful tips regarding contacting the ALS association in your area. Ours have been a phenomenal resource. The people of this forum are phenomenal in every way.

Everyone's reactions to diagnosis are different. But, for me, the scare and panic did go away after awhile. Now, we are enjoying our life, sharing our love, and making beuatiful memories for our family.

I wish you all the best.
Love and light
Meg

 

[abbas child]

Hi Mikkiedd,

I am so sorry you've gotten this diagnosis, and had so much happen quickly.

What are you dealing with--which part(s) of your body? Please let us know who you have as a caregiver, and a bit more concerning your helps--Are you a vet who would receive help through the VA, or is private insurance your situation...or if neither, Medicare? There are folks here who can help with their own experience.

Several folks have joined--have received their diagnosis within the last week--and I expect that you will have common fears as you process this. But, it will become easier. The first few days or weeks is really the toughest. So, please tell us what your situation is, and that will help us know what you would benefit from learning, and what you simply don't need to even think about. If you read upsetting threads, stop reading them. Not everyone experiences all of the losses, and also not in the same time frame. We're all different.

I'm praying for you--peace.
Ann

 

[mikkiedd]

Thank you all so much for your kind words. It has been scary. As for "what body parts" are affected: feet, hands and left whole arm...cramps in other muscles, chewing and swallowing issues (on a verysoft diet now), bad resp...("mod to sever restrictive impairment/non-responsive to meds...etc), very weak and I get tired easily. Otherwise, I am ok.

I am trying to get into a local ALS clinic. I was referred to the JH ALS clinic by a Johns Hopkins physician, but whe they called me schedule an appointment, they stated they wanted to have another more depth EMG test (which I just had done),...I do not want to g through that a again. We shall see.

My doctor is will willing to give me a different referral to Hershey (PA) ALS clinic.

Anyway, one day at a time and I see my pulmonolgist tomorrow.


Again, thank you so very much!

 

[michael0314]

I'm sorry for your diagnosis but you have found a very supportive informative group of people. I am with you the emg was terrible! Doc asked if I wanted a second opinion and more in depth testing, NO THANKS! Id rather have rabbies shots lol Dont hesitate to ask questions, make bonds and friends here. There are some ways to navigate through old threads and often get answers. The people change some but the questions are often similar.

 

[Lavender Lady]

Welcome. Sorry to hear of your diagnosis. I will pray for you.

 

[smwelder]

Welcome to our family. so sorry u have to be here. the worst news is out your finding out u have als. the best thing you can do for yourself is educate yourself as to what all can happen as things progress. by doing so it allows you to plane ahead. although you my not need things now put things in motion so the items neeed later are already there for you . the first few months are going to seem crazy but after things are put in place the busynes of all this settles down. as others stated allow your self to expres your feelings yel get mad cry be happy just let it flow. try not to get to cought up in what you cant do, focuse on what u can and live with the sickness don't sit by idel waiting for it to take over. stay with us you'll learn where a bunch of wonderful nutty at times loveing family that wants northing more then to help each other

 

[korrey]

I guess it is ok to be nervous. I was diagnosed 4 days ago then joined this very educational and wonderfully friendly site with a lot of beautifull people that would love to help. I have not told anyone but I had a good cry the morning after

Well, I guess this was just a bad month! I was just diagnosed on the 11th. I freaked at first, but now I am taking it step by step, day by day......the hardest part, I don't care what happens to me, the hardest part of this for me is I am single mom to my WONDERFUL AMAZING Daughter who JUST turned 12 in Feb. We live with my parents which my mom is suffering from end stage liver failure and a whole bunch of other things that just all hit her at once. I have 2 sisters, they have families and their own houses and they both have 3 kids. Well, My sisters and me do not always get along. They are drama and just we are totally different. We have SOOOO many TOTALLY different beliefs especially when it comes to the kids. Well my problems with MY sisters has bled over in to the kids. The kids started treating me different for a while, now they are not close with my daughter (dylann is her name). They treat her like she is a freak. Dylann is a very free spirit. That is one BIG thing I have taught dylann is that she ALWAYS has a choice as long as she can dream it! I had wanted to home school her when she was little but my sisters were totally against it so I went along with the pack and did what they wanted to keep them happy and close to me. But as dylann grew, I did not want Dylann to always think she had to "follow the pack". I wanted her to see that......just that she could do whatever she wanted. Fast forward to now, We had some issues with the public school here. Dylann was in the Gifted classes and she kept having problems in one class and I went and met with the teacher and he told me she needed to "dumb it down" that it was WAY over everyone elses project and he had to be able to grade it in line with the other students so go home and write a couple of words, you will be fine, just don't try so hard!?! WHAT! So I walked up to the principals office and withdrew her. So she is now FINALLY doing home school---where she belongs. It is crazy there is a VERY sweet lady who lives a couple of houses up and she has a daughter who is Dylann's age AND IS HOMESCHOOLED and has been her whole life. My friend, her mom has a teaching degree so she helps me with dylann and her schooling, plus she has turned out to be the only friend in my life who truley cares about me and dylann. Well, I got off track from what I was actually saying. I guess it is just too hard to talk about so God keeps putting stuff in my mind. haha. Anyway, my point......how do I figure out who is going to take care of my daughter? No one would respect MY wishes about how to raise Dylann. No one in my life shows love, affection, or respect in our lives now, how am I to expect that when they take Dylann? WHO IS GOING TO LOVE AND KNOW MY CHILD THE WAY I DO? WHO WILL PUT HER FIRST? WHO WILL PROTECT HER? WHO WILL TEACH HER HOW TO BE A GROWN WOMAN, HOW DO I KNOW SOMEONE WILL HOLD HER AND LOVE HER WHEN SHE HURTS OR JUST NEEDS IT? WHAT DO I DO?!?!?!?! The child has NEVER met her father, he has made it clear (EVEN THREATENED US IF SHE SHOWS UP ON HIS DOORSTEP EVER) So, we have no one, like I said we live with my parents and always have, dylann is already having to deal with my mom being sick and eventually dying in the near future, my Dad, her grandfather is Old and takes care of my mom, he is NOT a great dad. He has never done anything to make me NOT like him, he just is a non parent. He just basically exists, well except for when he is being passive aggressive and taking it all out on me, but now with me getting this!?!?!?!?! WHY WOULD GOD TAKE AWAY THE ONLY PERSON THIS CHILD HAS?!?!? NO ONE has ANYWHERE NEAR a close relationship with her. My sisters are insane they would try and change EVERYTHING I believed in, everything Dylann believes in, THEY WOULD TRY AND CHANGE HER! My daughter will be the "red headed step child" so to speak. I REALLY want to get something in writing and have it filed legally, but WHO?!? How am I going to choose that? I don't date, never been married, don't have friends really, My sisters are OPENLY rude to my daughter, No extended family either......THERE IS NO ONE! I am soooooo scared for HER I don't give a rats @ss about what all is going to happen to me, I just want dylann to be happy, be free, and be loved............WHAT DO I DO?!?!?!?!

 

[abbas child]

I'm so hopeful you get good news and help at the Pulmonologist's tomorrow. My strategy for where to go and what to do is to look up and ask, then let the wave carry me in faith. The Hopkins clinic is a bit far for me to travel, but neither would I have wanted more needling. Hershey would certainly be closer and--I hope, easier for you. Michael's comment about rabies shots rather than more EMGs is funny--I thought he said "rabbit shots" for a sec.

Mikkied, you do have a lot of areas in play to deal with--don't forget the ALSA. Type in a search for your area and you should get a phone #. My coordinator is worth her weight in gold...I hope you find the same help.