Newly diagnosed, wondering how to tell relatives and others

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HeatherPC

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Hello! I have been reading on these forums for the past 4 months while my ALS Specialist Neurologist at Ohio State Univ. told me ALS was possible, then probable. The information here helped me feel more prepared for the visits with my neurologist. Now I am diagnosed, and have been told I am in the early stages. My dominant hand has been mainly affected and 2 EMGs and a physical test all were consistent with the diagnosis. I will visit the clinic for my next appointment.

I am a 48 years old female with twin 16 year olds. My husband and I are still adjusting to this diagnosis and are wondering when to tell our boys. We have only shared the news with my mother, but we would like to share it with other family too. How do you share this news with others? Any advice is welcomed.


Heather in Ohio
 

Nikki J

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Hi Heather

sorry you had to join us.

I suspect your sons know there is something wrong and may have been searching online. They may have guessed. I encourage you to tell them next and probably very soon.

who you tell how and when is up to you. I think I would give your family a chance to adjust and I would see how the twins are doing and how they feel about it before telling others. You may want to tell their guidance counselor and teachers early on.
 

lgelb

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Welcome, Heather, while sorry you find yourself here. We'll support you however we can.

You can search on topics using the link at top right. The consensus here has been to let kids that age know ASAP, since they know/infer more than we may think. To know that something is wrong but not what, can be very distressing.

At that age, they will need to know [and will research anyway] that it is a fatal, progressive disease but it is also important to emphasize that there is no timetable in stone and research to slow it down is ongoing. Some parents let school counselors or teachers know when they have told their kids, so they can be aware. If either of your boys has pre-existing psychological issues, you can always speak with a counselor first before disclosing the news.

You don't need a two-hour seminar; it is usually best to be bite-sized but direct -- this is called a motor neuron disease because it affects the nerves that control movement across the body, but it does not go from 0 to 60 overnight, etc. They will have questions, and what you do not know, you can research together.

Teens often want to know "why." You can share that this is not like smoking causing cancer, or diet leading to diabetes. It is nothing you, they, or anyone did.

Cascading from here, it is fine to let your close friends spread the word if you don't want to. Social media is another option.

I would certainly tell them together so they can support each other, and know that they're in this together with you.

Best,
Laurie
 

blitzc

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Hello Heather! I'm so sorry that you are here, but welcome you to our family!

Laurie had some excellent advice, especially regarding your twins. Our youngest was a freshmen in college at the time of my diagnosis. We waited to have him home for a weekend to tell him in person and in the safety and security of home, even though he knew something was wrong and was aware of my large number of tests and doctor appointments.

Our parents were next in person after a bit of time had passed for it to sink in. We told all close friends and family members in person except for those living out of state. So glad we talked in person!!

We avoided communicating my diagnosis through social media and asked others to honor our wishes to keep this news off their social media as well. With a disease that sucks all the control out of your life, this was one thing we wanted to control. We knew all the people who were aware and when.

As far as my colleagues at school (I was an elementary school teacher), I composed a letter that was sent to the entire staff explaining the diagnosis, information about ALS using the ALS Assoc. website for help, and my plans for the future. The guidance cou selor and principal helped me to explain in an age appropriate manner to my students along with a similar letter to their parents. I was very pleased at the reception my letters brought to the school community.

All of this took a period of 3 months. So don't feel tbe whole world needs to know immediately. The people closest to you should know as soon as you can and then tell others as you feel ready.

Good luck Heather and stay in contact here.
 

EricInLA

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Hi Heather,

Sorry to welcome you to this group, but you will find lots of support and friendly voices here.

I was diagnosed last year at the age 49, and the hardest thing for me was breaking the news to my 3 teenage sons. They each reacted in their own way, which was interesting, but it also relieved a lot of stress for me to get that out of the way. I would recommend telling your kids promptly so they can process and ask their questions. It may also ease your stress as it did for me.

With respect to others, there are a number of approaches you can take. I was really dreading the task of having 25 conversations with all my close friends and family members. So, I composed one e-mail explaining everything in very clear terms, along with an apology for communicating that way (but no one should be blaming you for that), and sent it out to everyone at the same time. That also avoids the problem of people wondering where they fall in the pecking order of receiving this information. You have enough on your plate - you don't need to deal with that. I told people that I didn't consider the news to be a secret, but on the other hand I didn't want it broadcast all over town. I definitely didn't want it to be splattered across social media. It may eventually get there -- for instance if someone see you participating in an ALS fundraiser -- but I don't like the idea of communicating a diagnosis that way. With respect to my friends, I told them not to feel awkward about bringing up my ALS, but on the other hand I didn't want it to be the focus of every conversation. It was very important to me that they treat me the way they always have, and so far that's worked pretty well.

I'm sure this is a very stressful time for you, but please trust that things do settle down as you adjust to a new normal.

My best,
Eric
 

lisa g

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Welcome Heather, we wish we didn't have to welcome anyone here but your in a good place. There is no BS here. We are all going through the same things just at different progression rates. That allows you to be well informed on what to expect coming down the road and get tips and tricks on how to deal with it.

I was diagnosed at age 60 so my daughters were older at that time (33 & 38). They knew something was going on watching my unstable balance and slowing speech. The day I got my EMG results and diagnosis was a blur. We didn't want to scare them over the phone so they both came to the house that night. My husband gave us space to talk and grieve. We talked about the decisions I would make and that I would dictate how this was going to go. I explained that it was going to come down to quality of life over quantity. When I said I was done they would need to respect that. They support my feelings. It was harder explaining to my grandchildren but after 2 years of watching my symptoms change they are very supportive.

Next came the friends. We have a tight bunch that we do things with at least once a week. They cried when I explained what ALS is but like my family they all try to help and lend support.

Explaining to your sons will be stressful but as long as your honest and explain how the disease processes you'll be ok. Answer any questions they have.

We're all here to support each other through this journey so ask questions and try to prepare to stay ahead of the challenges.
 
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