anyone know of support groups specifically for the newly diagnosed?

Michael_67

Member
Joined
Sep 1, 2019
Messages
12
Reason
PALS
Diagnosis
08/2019
Country
US
State
NY
Hi All,
I have been recently diagnosed and I am looking for a support group, virtual or in person, for those who are newly diagnosed. I have found that my local ALS support group through ALSA focuses on issues of people who have progressed much further. While it is good information to have in advance, I am still dealing with the shock of it, how to tell people, and how restructure my life. And even if no one knows of any, are there folks who would be interested in starting one? Any thoughts anyone has would be greatly appreciated. Thank you for reading and take good care of yourselves everyone!

Best,
Michael
 

KarenNWendyn

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Messages
2,577
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PALS
Diagnosis
07/2017
Country
US
State
OR
Welcome here. This forum is the best support group I’ve found. Take some time reading through threads, especially in the PALS and general sections. You will learn a lot. I find that the online and local support groups complement each other nicely.
 

KarenNWendyn

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Also, this is worth reading:
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
94
Reason
PALS
Diagnosis
04/2019
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US
State
Florida
Hi Michael,
Sorry to have to welcome you here but your in the right place. There are a bunch of us newbies here with questions and anxiety of what to expect. We're all navigating unchartered waters and you will find a wealth of knowledge and compasion from everyone here. Remember to ask any questions you might have.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
77
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Hi All,
I have been recently diagnosed and I am looking for a support group, virtual or in person, for those who are newly diagnosed. I have found that my local ALS support group through ALSA focuses on issues of people who have progressed much further. While it is good information to have in advance, I am still dealing with the shock of it, how to tell people, and how restructure my life. And even if no one knows of any, are there folks who would be interested in starting one? Any thoughts anyone has would be greatly appreciated. Thank you for reading and take good care of yourselves everyone!

Best,
Michael
Greetings, Michael. I’m so sorry for your diagnosis. I found the same situation with the ALSA here in north Florida, incredible folks but much more geared to PALS and CALS much further into the disease. As someone diagnosed in the past few months, I too have given a good deal of thought to this idea, and as useful as the comments and posts cited by Karen are, and they are remarkably helpful, I feel that regular conversations between the newly diagnosed does not really occur.

For me, dealing with the fear of the unknown is still my greatest challenge, and while all of us with ALS experience this, I think those that have lived with the disease for a year or more have moved more into a “fear of the known,” since progression has become more pronounced, the next function loss is usually better anticipated, and adaptation and acceptance have become more real. No less scary, but more real. I treasure the fact I can still do everything at this moment, but the “real” starts when I can no longer use a hand, arm, or leg (I do not have bulbar onset), because I know at that point we are off to the races.

One of the problems with starting a more lively dialogue among newly diagnosed is that there is so much variability in function at the time of diagnosis. I have read several posts from those diagnosed roughly the same time I was (late spring) that seem to be much further along in their functional loss. As the sticky posts describe so well, the general progression steps are predictable, but we have no idea who will move faster and who will move much slower along those steps. Obviously, those that are already further along (ie, significant loss of walking ability at diagnosis, or difficulty swallowing, for example), have a much quicker timeframe to make decisions about home modifications, transportation, medical procedures, etc., than someone like me that still has no significant functional failure at this point. I can only plan so far ahead not really knowing whether my arms or legs will go first.

I don’t know about your relationship situation, but for me, getting the house and finances in order for my wife was first priority. We got a new roof, new decking and fencing, de-cluttered, sold a motor home to access a good amount of cash, got the vehicles in good working order, etc. Somehow getting the house in order made me feel better. As the sticky describes, making a decision about work if you are not already retired can be traumatic. I made the decision to stop working shortly after diagnosis because time with my family won out over staying employed. However, telling friends and colleagues is deeply personal, and dependent on so many factors that there simply isn’t a “one size fits all.” That one is one you’ll have to figure out on your own.

As a fellow newbie, I’ll be happy to respond to any questions you might have. I also know that there are 2-3 other newly diagnosed that I believe will also be very helpful (Lisa G., where are you.). All the best, Kevin
 

lisa g

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Joined
Apr 17, 2019
Messages
94
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Hi Kevin,
I know it's hard for us to give any advice while we are at the point of being relatively symptom free. I have had no progression since being diagnosed. I'm grateful for that everyday but still feel the anxiety of when is the shoe going to drop.

For me I think the hardest adjustment was telling family and friends of the diagnosis. I've always have excepted death as a reality but there's something to be said when that reality is thrust into your present.

We'll just have to navigate this the best we can and one day at a time.

Michael- Feel free to ask questions that's how you'll learn about what will be coming around the corner. We're all in this together.

Lisa
 

mytmouz

Member
Joined
Aug 17, 2019
Messages
20
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
I seem to be on the fast track downhill, so I can add something from that perspective when needed...
 

KarenNWendyn

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Even though I was diagnosed 2 years ago, I remember it as if it were yesterday. At my local support group, I found it frightening to see someone in a more advanced state. Am I going to end up like that? I found this online forum less intimidating in that respect because I could peruse it at my own pace, and I didn’t have to look at people who were more advanced. As my own disease advanced, the latter has become somewhat less intimidating to me.

I still find that anticipating functional losses that I haven’t yet experienced to be intimidating and frightening. It’s fear of the unknown. It’s easier to find a way to deal with what we have when we have it then to anticipate something that’s theoretical. One of the things that’s so maddening about this disease (for me) is not being able to predict the course and sequence of progression, the impact on us and our families, and caregiving needs at any given future point. As the saying goes, hope for the best, prepare for the worst.

If you’re comfortable doing so Michael, you’re welcome to share more of your story. Feel free to ask all sorts of questions. We’ll support you as best we can.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
201
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Welcome to my support group, Michael! You are among great people willing to lend a hand at all levels.

I have attended several local ALS Association meetings and also found the same issue. In fact I just discussed two weeks ago at the meeting about this exact problem. They need to have more "orientation" seminars for the newly diagnosed. I found my best support and help here.

Did your local group send a packet of information covering all sorts of issues to you yet? It was helpful as a starting point.

But I would encourage you to reach out to your local group for one of their social workers to make a home visit where you can ask all you need to ask. My local group sent one out to me, but it just wasn't as early as I needed. I spent too much time in the unknown zone.
 

KimT

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When I was first diagnosed, I found a counselor who understood ALS and we did one-on-one counseling for a few months. We did some in person and some from my iPad because I was still working. It helped.

There are so many virtual groups. You can even create one on Facebook. Most of the groups there add new members just about every day, sometimes more than one a day.
 

Michael_67

Member
Joined
Sep 1, 2019
Messages
12
Reason
PALS
Diagnosis
08/2019
Country
US
State
NY
Wow! Thank you all so much for sharing your thoughts, resources, and support. I’ve been offline for a few days so my apologies for the delay in responding. I will write in more depth in the next few days. In the meantime just know that I am grateful for you all taking the time to welcome me. I hope you are all well today and I send you all healing energy!
Take good care,
Michael
 

melab

Member
Joined
Oct 19, 2018
Messages
10
Reason
PALS
Diagnosis
12/2018
Country
US
State
FL
Greetings, Michael. I’m so sorry for your diagnosis. I found the same situation with the ALSA here in north Florida, incredible folks but much more geared to PALS and CALS much further into the disease. As someone diagnosed in the past few months, I too have given a good deal of thought to this idea, and as useful as the comments and posts cited by Karen are, and they are remarkably helpful, I feel that regular conversations between the newly diagnosed does not really occur.

For me, dealing with the fear of the unknown is still my greatest challenge, and while all of us with ALS experience this, I think those that have lived with the disease for a year or more have moved more into a “fear of the known,” since progression has become more pronounced, the next function loss is usually better anticipated, and adaptation and acceptance have become more real. No less scary, but more real. I treasure the fact I can still do everything at this moment, but the “real” starts when I can no longer use a hand, arm, or leg (I do not have bulbar onset), because I know at that point we are off to the races.

One of the problems with starting a more lively dialogue among newly diagnosed is that there is so much variability in function at the time of diagnosis. I have read several posts from those diagnosed roughly the same time I was (late spring) that seem to be much further along in their functional loss. As the sticky posts describe so well, the general progression steps are predictable, but we have no idea who will move faster and who will move much slower along those steps. Obviously, those that are already further along (ie, significant loss of walking ability at diagnosis, or difficulty swallowing, for example), have a much quicker timeframe to make decisions about home modifications, transportation, medical procedures, etc., than someone like me that still has no significant functional failure at this point. I can only plan so far ahead not really knowing whether my arms or legs will go first.

I don’t know about your relationship situation, but for me, getting the house and finances in order for my wife was first priority. We got a new roof, new decking and fencing, de-cluttered, sold a motor home to access a good amount of cash, got the vehicles in good working order, etc. Somehow getting the house in order made me feel better. As the sticky describes, making a decision about work if you are not already retired can be traumatic. I made the decision to stop working shortly after diagnosis because time with my family won out over staying employed. However, telling friends and colleagues is deeply personal, and dependent on so many factors that there simply isn’t a “one size fits all.” That one is one you’ll have to figure out on your own.

As a fellow newbie, I’ll be happy to respond to any questions you might have. I also know that there are 2-3 other newly diagnosed that I believe will also be very helpful (Lisa G., where are you.). All the best, Kevin
I do not participate much on any of the forums. But I have experience almost no in person support from providers in the central Florida area at all. That said, I am willing to connect personally with anyone who would or is capable of connecting over the phone or even meeting in person to share ideas and experiences of newly diagnosed. I am not sure how to connect with anyone through the forum directly though.

I would love to start a central/north Florida Support group to pool resources. Ideas?
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
77
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
I do not participate much on any of the forums. But I have experience almost no in person support from providers in the central Florida area at all. That said, I am willing to connect personally with anyone who would or is capable of connecting over the phone or even meeting in person to share ideas and experiences of newly diagnosed. I am not sure how to connect with anyone through the forum directly though.

I would love to start a central/north Florida Support group to pool resources. Ideas?
Let me think on this a bit. My wife and I have spoken many times about how “alone” this disease is for many. Some parts of the country (see Massachusetts and Oregon) seem to offer much more, but maybe that’s because the PALS in those states have been very proactive in soliciting all available resources.

I’m pretty much still shell shocked by it all, and have withdrawn a bit. The good folks at the Florida ALSA set up weekly conference calls, etc., and either Mayo or Shands in Jacksonville offer clinics every few months, but it really feels like everyone for themselves, doesn’t it?

Kim T. has set up an incredible team of local doctors that handle her needs on the east coast, but I’m relying on my PCP as the primary interface, with referrals as needed. I now have a local pulmonologist with which I’ve established a relationship, and I still use neurologist Dr. Pulley at Shands for several prescriptions. The main thing I’m missing is real conversation with us newly diagnosed folks. Just someone on the other line going through the same fears and uncertainties at relatively the same time.

Stay tuned. Kevin
 

Michael_67

Member
Joined
Sep 1, 2019
Messages
12
Reason
PALS
Diagnosis
08/2019
Country
US
State
NY
Hi Kevin and melab,
I’m finally checking back in here and I can identify with the feeling of still being in shock and how alone this disease can make you feel. If you all felt like doing a phone conference call at some point to discuss these feelings, I’d be open to that. Or if you wanted to do it online we could use a portal such as Patients Like Me or exchange emails. Let me know if any of those options might work.
 
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