Old 12-14-2018, 07:54 PM #46 (permalink)
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Default Re: Just found out - please help.

Fortunately January is just a few weeks away.

Call them back ASAP and take first available.

Edit: Sorry, i was reading from the first page.

Believe and have faith in tomorrow... maybe a soon tomorrow will bring a break through.

I have a situation here where my hope is break through tomorrow... for my wife who has
been diagnosed with onset of Alzheimers.

Hope.

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Old 12-14-2018, 08:42 PM #47 (permalink)
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Default Re: Just found out - please help.

Oh Al I am so sorry to hear that. As if you don’t have enough to cope with already.
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Old 12-14-2018, 09:02 PM #48 (permalink)
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Default Re: Just found out - please help.

Thanks Lenore. We have made plans, we are making adjustments.

We are fortunate that her sons' wife has an extensive medical background.

We will be moving close to them next year.

We give the future the time needed to prepare (taking care of business)
then we leave it and live today.

We are blessed in many ways. We try to remember those without means,
resources, insurance and or family.

I hope Thomas can find peace to navigate a steady course as each day comes.
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Old 12-14-2018, 10:14 PM #49 (permalink)
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Default Re: Just found out - please help.

Here are some of my suggestions:

First - while you definitely need to tell them, don't feel rushed to do so.
We were in your shoes exactly 2 years ago and felt exactly the same way - we have to tell the kids but how can we possibly tell do so? We ended up waiting almost one month until MLK weekend (mid-January). The waiting was agonizing and I am not saying to wait that long (it made sense for us for a variety of personal and professional reasons based on the way we "rolled out our communication plan") but my point is, although you and your husband know and you have this huge weight on you, your kids and everyone else is blissfully unaware. So take the time...take it to figure things out and sort them through. Let your kids enjoy one more holiday season without this marking it.

Second - For what to say, I cannot stress enough - speak to Paula Rauch/PACT.

(or, if unable, read through relevant sections her book). You will get a ton of answers about how to approach this. My mind is a sieve and I forget specific details, but some of the main points you will want to make to your kids (and anyone else you tell) are:

We have difficult news to share...
- as you may have noticed, dad has been experiencing some (explain symptoms)

Give Diagnosis
(Also, especially when telling others, if the diagnosis is definitive, BE SURE TO state that (cannot tell you how many people challenge that, even medical personnel we have seen recently. "I know someone who had X, are you sure its not that?" "you know, lyme disease....". So nip it in the bud so you don't have to say YES WE ARE FREAKING SURE, THANK YOU)
Explain what this means
- while the diagnosis is certain, the prognosis /course of the disease is not and no two patients are the same
- Be honest - life-ending; no cure

Provide hope (but avoid false promises)
- will be getting best medical care
- it is a progressive disease so nothing is happening immediately, but should enjoy and appreciate our time together that much more

What can they do/How can they help
- for our kids - told them we are going to try to enjoy life together to the fullest and not take things for granted
- for friends with same-aged kids, give them guidance on what to tell their kids (you can be honest and say you are trying to figure it all out yourself) and how to interact with yours (we said treat them as they always have and provide love and support).
- if you are setting up some sort of support site (like lotsahelpinghands or meal train, include that information); consider designating one friend/family member to manage this to take off your plate.

We used the same basic outline for all our communications, just tailored it based on the audience. We actually came up a communication plan to agree on how to get the word out - who were the different audiences (kids, parents/sibs, extended family, close friends, extended friends, work colleagues, etc.); method (face-to-face, phone call, email, etc.) and timing for telling each group.
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Old 12-14-2018, 10:36 PM #50 (permalink)
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Default Re: Just found out - please help.

<removed quoted text>

Here is the email we sent out in case you want to use when you are ready. The script for our kids was basically the same. Almost every sentence was written to address a point Paula made in my initial conversation with her so I would encourage to read through and modify based on your specifics.
We apologize for the impersonal email and hate to be delivering this news this way (or any way at all). However we felt this was the most effective way to do so. We will have inadvertently left people off this original email but please do not take it as any sign other than that we are not quite 100% at the moment.

As some of you may know. He has been experiencing a constellation of odd health symptoms over the past few months. It started with asthma-like symptoms for which he has been taking meds and to which those symptoms seem to be responding. However, in addition to those symptoms, over the past two months, others have emerged including muscle weakness, fatigue, voice weakness and slurring. He/we have gone to a variety of different doctors/specialists to try to get to the bottom of what is going on. We consider ourselves lucky that we live in a place with world leading medical institutions and access the best specialists in the Boston hospital networks.

We didn’t tell you sooner since we wanted clear clinical confirmation, time to gather as much information as possible and time to process it ourselves and share it with immediate family who we just told last week. The diagnosis originally made at The Brigham and then confirmed at MGH is definitive; He has ALS (amyotrophic lateral sclerosis or “Lou Gehrig’s disease”).

While the diagnosis is certain, the prognosis is not. One can go to the ALS website or google search and find all kinds of statistics. Science and statistics are averages so they can tell us about everyone, but not about any one specific person. Nobody can tell us how fast or slow it will progress, but we are hopeful that he has the slow-progressing variety.

ALS is not a good diagnosis. There are significant inroads being made in research and there is much better understanding of the disease than there once was. There are cases where the progression stops….or slows. But it does not reverse. At this time, there is no cure, and the treatments out there are marginally effective…extending life or quality of life by several months. He is receiving care at Mass General’s ALS clinic, the largest and most comprehensive and inter-disciplinary ALS treatment center in the world.

His presentation of symptoms is somewhat less common… many patients exhibit initial symptoms in their lower extremities and the disease then progresses to involve upper extremities. His course is different with his vocal chords and speech being most noticeably affected. His legs / lower extremities have been spared so far but he has lost strength and some functionality of his arms / hands, especially his left.

He is still working and intends to continue to do so.

One of the mottos/values from our girls’ summer camp that we certainly embrace is PACE (Positive Attitude Changes Everything). We are strong believers in this. Despite the gravity of this diagnosis, we feel that a positive attitude to make the best of a bad situation is the best approach. Some of the things that we are hopeful or feel lucky about are that:
  • Research will slow / stop the progression of his disease
  • He is receiving the best care by world-class doctors and leading research here in Boston
  • We are surrounded by loving friends and family who provide us with unending support through this difficult time for us and, especially for our children . There are sure to be times where we want to be surrounded by all of you but there will also be times where we may retreat and just need time by ourselves. Please understand this.
We still need time to process this as a family. For now, we are trying to maintain as normal a routine as possible. For our girls especially, a positive mindset will be extremely important so rather than sympathy, we ask that you and/or your children treat them as they always have and to provide ongoing friendship, support and encouragement.

And, if you know anything about us, you understand that he does not respond well to pity, but he can certainly use your positive thoughts and love. Given his fatigue and difficulty speaking, phone calls and visits are hard but we welcome your e-mails and texts….just be patient with us if we are slow to respond. At some point in the future, we will need more help and when we reach those stages, we’ll let you know.

Also, once you tell your kids (and friends and family) you probably want to let their schools know (guidance counselors, maybe teachers so they are aware and can flag any changes in behavior),

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Old 12-15-2018, 12:02 AM #51 (permalink)
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Default Re: Just found out - please help.

Turtals I really appreciate both posts, thank you for sharing.

What stood out a lot to me because of experiences we had was - the diagnosis is definitive.

Would you believe, only 1 week ago I had a person stand and try to tell me that doctors don't have a clue and my husband, in fact, had a problem with electro-magnetic radiation exposure that is killing everyone. This was within 15 minutes of meeting this person, he never met my husband and yeah ok he was a bit of a um, I have lots of aussie slang words spring to mind ...

But it was just horrible - even 4.5 years after my husbands death, to have someone start to second guess and tell me this! And I remembered all the crap of diets and vitamins and lyme and on it went.

So yes, once you tell people, be very definitive as it is just awful when you find yourself suddenly faced with so many scenarios.

Not likely to happen when you tell your children, but you do need to protect them from people laying weird ideas on them too. So the clearer you can find the way to be with your kids, the kinder you are being to them as kids actually like facts and clarity, even when it's hard stuff.

I also like to remember that there is only one way out of this life. It is not like everyone else will live forever, and that can be important to discuss with children.
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Old 12-15-2018, 02:58 AM #52 (permalink)
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Default Re: Just found out - please help.

Turtals - wow, thank you so much. All of that is incredible and that email is so helpful.

I should have corrected the info that we donít have to wait until January anymore. We are now going this Tuesday to MGH. We are relieved about that. And, as it turns out, Paula from the PACT program is going to be there showdowing the ALS clinic so we will be sitting with her for a bit. I also spoke with Jen about it earlier this week too.

I would like to say that I cannot believe that anyone would challenge or doubt an ALS diagnosis after you tell them. Iím sure we will face that too. Some people say *stupid* things out of kindness and some people are just stupid. This diagnosis sure clarified the fact that suffering fools is not worth the time and effort. Sorry you guys have/had to deal with that. Geesh.

My husband and I feel that we need to tell our kids soon for a variety of reasons.
1) it is getting hard to hide it and we need them to trust us going forward.
2) we understand that the holidays are a protected time for kids - they will be surrounded by close family and our closest friends most of whom know whatís going on. The period after the holidays is a let down for kids and not an emotionally protected time so while we thought about waiting, it feels right to tell them before....
3)thinking being that the traditions and the normalcy of our holidays should provide some comfort to them as it will reinforce that life is ďnormalĒ AAr least for right now and that we are living our lives together. Nothing is drastically changing right now. We hope that provides a level of comfort.
4) Itís difficult to have only the necessary people know to get the logistical help (rides, etc), time off work for appointments, etc and emotional support from a few close people without being dishonest and deceptive to the kids, especially the 15 yo. He knows something it up even though he acts like he doesnít. Iím also getting increasingly nervous that the kids are going to hear something accidentally and then that trust is damaged, too.

This is the current plan: We are going to tell them we are going to Boston on Tues to meet with specialists about what has been going on with dadís walking and after several months of tests etc., we should have news to share with them Wednesday. And then we will tell them separately in an age appropriate way. This advice was given to us by MGH because then the kids will feel like they got the diagnosis ďwith usĒ and we will start this path together as a family. I feel that I can deliver this news in a calm controlled way and so does my husband. My heart is breaking of course but my resolve to model how we will face this diagnosis is strong for my boys. I am determined to show them we are handling it and that they will be cared for and supported by us.

Then, I can have some time (and lots of wine) when school is out to slowly let teachers, coaches and our friends know. And we will live on and do what we need to do to emotionally support them while giving my husband the care he needs.

I know this is not the right way for others but it feels right to me and my husband today. I do worry about ďruining ChristmasĒ but the thought that life (even Xmas) will go on as planned for at least a little while feels right. I donít know, itís a tough call. None of us should ever be in this situation but we are. And we walk through the fear and sadness until we find a spark of joy. And then we and carry on. Thank you all for your honest and good advice.

Peace and comfort to you.
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Old 12-15-2018, 03:47 AM #53 (permalink)
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Default Re: Just found out - please help.

There is no universal 'right' way - you do what feels right in your heart.
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Old 12-15-2018, 04:37 AM #54 (permalink)
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Default Re: Just found out - please help.

It sounds like you have a good plan.

I am happy you got a sooner appointment. It will be good to cross that bridge before the holidays I think and you likely will find some comfort when you meet the MGH team

Best of luck
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Old 12-15-2018, 05:37 AM #55 (permalink)
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Default Re: Just found out - please help.

This looks like a very good plan and approach
Hoping you can make the most of the holidays
Hugs
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Old 12-15-2018, 10:07 AM #56 (permalink)
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Default Re: Just found out - please help.

Turtals - amazing email letter.

Thomas - what others have said is so valid - there is no right or wrong way - only the way you decide. Our children were a little older - 19, 17 and 15 when we got a diagnosis. They knew that something was going on as it took a few years to get there. They all handled the news differently, just as their personalities are. We told everyone else when we felt it was appropriate. We have had an outpouring of support from family, friends and neighbors.

You will find the right way to navigate through this. Hang in there. Hugs.
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Old 12-15-2018, 10:58 AM #57 (permalink)
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Default Re: Just found out - please help.

Thomas933,


These are very difficult times and yet you are rising exceptionally to the challenge of those things that need doing. I have been holding my breath for you... yet now find myself breathing a bit easier. Note the issue, ask questions, make your own determination and move forward. You both are taking such very good care of your family. I know it is tough... but I hope you can find a moment to take a deep breath and allow a smile to touch your face... for you have already accomplished so much!


My best...


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Old 12-15-2018, 12:30 PM #58 (permalink)
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Default Re: Just found out - please help.

Thomas,

These next few months will be ones of many challenges, but something I know you and your wonderful husband can rise to. I remember every detail of my husband's diagnosis a few months before he turned 45. It was days and nights of crying and feeling as if we were in a bad dream. I thought to myself, "look at all these people, walking around going about their everyday life. How can this be possible when our world has been so turned upside down?". But, as someone with sage advice gave me (on this forum, of course), "This may be a strange and scary new world for you, but it is a new world that you will, for the most part, get used to". And he was right; while it sucks and there are so many tears still, it has become our new norm, and we have met many wonderful people as a result.

As for how we told people, except for everyone outside our closest friends and immediate family, which we told in person, we did what Turtal did but posted our message on Facebook. Some people never talked to us again and others have become so close, we now consider them family. We count ourselves to be very blessed with these new "family"
members.

My thoughts are with you as you traverse this new path in life, and please know that you are among new friends here. They are a very wonderful, caring and supportive bunch. If you are going to be a part of a crappy group, there's no better people to be with.

Joanna
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Old 12-15-2018, 12:52 PM #59 (permalink)
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Default Re: Just found out - please help.

Thomas933
I am so sorry if I came across as being didactic and implying that my way was the right way
(please disregard any badly communicated thoughts or tone and chalk them up to sleep deprivation)

There is definitely "no right way". Just what is right for you. You know yourself and your husband and your kids better than anyone else. Trust your instincts.

Your plan sounds perfect.

So happy for you to have an appointment for next week. (Be sure to bring lots of snacks and drinks in case it ends up being a long day). The team there is incredible. And it is great that Dr. Rauch will be shadowing. I never got a chance to meet her...just had several long phone calls.

And yes, lots and lots of wine to get through this....just don't end up falling down the stairs on your face and ending up in the ER like I did a couple of months ago (I would argue it was due more to sleep deprivation than the wine but, regardless, it was certainly not something that our family needed to deal with).


And here are just two recent anecdotes related to questioning the ALS diagnosis:

- a couple of months ago, a visiting nurse came to do intake for home care visits a couple. As she was wrapping up the administrative stuff, she pulled me aside and asked whether I was sure it was not lyme. (She also made some other inappropriate comment about how awful this is to see someone so young like this, blah blah. Yes, thanks, I know.)

- last week, we went to apply for medical marijuana card - the examining physician (who did no examination, by the way), asked whether it was a spinal cord injury.
"Nope."
"Are you sure. "
"Yup, we are sure."
"Because I've seen a lot of spinal cord injury."
Dude, just give us the doctor recommendation and let us get out of here.
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Old 12-15-2018, 02:33 PM #60 (permalink)
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Default Re: Just found out - please help.

Turtal - no apologies (no guilt....). I know you were helping and you did.
I cut and pasted your email and made it work for us. It's good to have for now.

Jim - thank you for your thoughts.- very kind.

Everyone else -- Thank you for the support. You have been with me through some of the darkest moments the last 10 days -- middle of the night, early morning emails. I know there will be more and I hope to help some of you in the future. I'm sure I'll be back soon.
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