Old 06-21-2016, 12:17 AM #1 (permalink)
Member
 
Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
sunandsea sunandsea is offline
Member

Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
Default New member

Hi - I've been reading the forums for some time but only posted once. I know the support offered here would be helpful and thought I would introduce myself. My husband was diagnosed in the fall of 2014 and is dealing with some cognitive decline as well as the physical losses this disease brings. I can't believe the changes this past year has brought. He is no longer walking but has good upper body strength. He once was talkative, vibrant and gifted in his field of computer technology and now he can't find the words to express what he is thinking. Nighttime is the loneliest and when my fears tend to overtake me. It feels good just to type this and know someone who understands will be reading it. I admire the wisdom and strength of many who post here. Thanks for the encouraging words. They have helped many nights when I wonder about tomorrow and wish I had made today better for him.
sunandsea is offline  
Thanks from
cookimonster (07-02-2016)
Old 06-21-2016, 01:54 AM #2 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: New member

Welcome to family I'm sorry to say sunandsea.

We can help overcome a little of that feeling of isolation that's for sure.
I think being understood is really important for CALS too - it's not something we can just chat about to anyone without finding ourselves explaining and failing. Here a few words and we are so understood it's amazing

Now you have come out, you may feel more able to join right on in!
affected is online now  
Thanks from
cookimonster (07-02-2016)
Old 06-21-2016, 08:37 AM #3 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,386
soonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to behold
soonerwife soonerwife is offline
Very Helpful Member
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,386
soonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to behold
Default Re: New member

So sorry to welcome you here! This forum is great for information and people who truly understand. I understand the loneliness completely. I feel the same! Again, so sorry,
soonerwife is offline  
Old 06-21-2016, 09:14 AM #4 (permalink)
New Member
 
Join Date: 2016
City: Holly Springs
State: North Carolina
Country: Uni
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 81
njk0407 is on a distinguished road
njk0407 njk0407 is offline
New Member
Join Date: 2016
City: Holly Springs
State: North Carolina
Country: Uni
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 81
njk0407 is on a distinguished road
Default Re: New member

So sorry you are here, but welcome! This forum has really helped me tremendously in the short amount of time I've been here. Everyone is extremely supportive and knowledgeable.

-Nikki
njk0407 is offline  
Old 06-21-2016, 09:34 AM #5 (permalink)
Member
 
Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
sunandsea sunandsea is offline
Member

Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
Default Re: New member

Thank you, all. I wish I could share some of my thoughts as well as many others who post. The frustration, sadness, and fear many have spoken about are such a part of life now. I feel like I've lost my best friend - this disease truly is a long good-bye with the ones you love. Thank you, again.
sunandsea is offline  
Old 06-21-2016, 10:54 AM #6 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,651
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,651
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: New member

Hi, Sun, welcome to the dubious honor of our club. There is never a way to make every day "the best it can be" -- none of us is more than human. That you think about this makes you an awesome CALS.

It is a longer goodbye than some, but also offers the opportunity that unexpected death doesn't, to say, remember and do things that bring joy and peace both in the moment and later on.

Best,
Laurie
lgelb is offline  
Old 06-21-2016, 01:21 PM #7 (permalink)
Barbie's Avatar
Extremely Helpful Member
 
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,672
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Barbie Barbie is offline
Extremely Helpful Member
Barbie's Avatar
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,672
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Default Re: New member

Sunny you have taken a very important step to you own wellbeing. Being an active member of the forums helped me every day. We love you and understand your feelings no questions asked and no judgments put on you. Feel free to jump in anytime with comments or suggestions or just to tell everyone your pain and sorrows. The more you do--I truly believe--the easier it will be to deal with everything in your life.

Hugs
Barbie is offline  
Old 06-21-2016, 01:35 PM #8 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,496
Narrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud of
Narrowminded Narrowminded is offline
Very Helpful Member
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,496
Narrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud ofNarrowminded has much to be proud of
Default Re: New member

Welcome Sun, and as others I am sorry that you have to join us here. This is a fantastic group and does make you feel that much less alone.

Sue
Narrowminded is offline  
Old 06-21-2016, 06:37 PM #9 (permalink)
Nuts's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,378
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Nuts Nuts is offline
Extremely Helpful Member

Nuts's Avatar
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,378
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Default Re: New member

Welcome, Sunny. Sorrow brings us together, but as you've said, this is a wonderful group--you are immediately understood here. My husband was diagnosed in January of 2014. He also had an impressive career in computers (he still gets email from head hunters on a regular basis), and he also struggles to find the right words. Mine is still sharp enough, however, to know he's searching and so he quickly tosses another word in (and sometimes it works).

I'm glad that you've decided to chime in and join the conversation. It is helpful to read, but even more cathartic to share, and as you share your story you will help others. Don't worry about how well you express yourself. We understand, and you may find that the words come more easily the more you write. I was very nervous at first, but got over that quickly. Now I write faster than I think at times, and no one has chastised me yet!!!

Big hugs
Becky
Nuts is offline  
Old 07-01-2016, 09:12 PM #10 (permalink)
Member
 
Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
sunandsea sunandsea is offline
Member

Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
Default Re: New member

Thanks everyone. I had started a thread on the general forum with questions about respiration and haven't had a chance to respond to these comments. It's been a busy week since I wrote. The ftd is really having an impact on my husband and we have had issues of extreme confusion, memory loss (including who I am), and a greater difficulty with expressive language or aphasia. This experience just becomes more and more challenging, doesn't it?
But thank you, again. I do appreciate the words of welcome and support.
sunandsea is offline  
Old 07-02-2016, 01:40 AM #11 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,529
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: New member

Sunandsea, I definitely found the FTD far harder to cope with than the ALS (and that's saying something as ALS is the pits!). We are with you xx
affected is online now  
Old 07-02-2016, 08:16 AM #12 (permalink)
cookimonster's Avatar
New Member (Say Hi)
 
Join Date: 2016
City: Hastings
State: MN.
Country: US
Diagnosed: 01/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 9
cookimonster is on a distinguished road
cookimonster cookimonster is offline
New Member (Say Hi)
cookimonster's Avatar
Join Date: 2016
City: Hastings
State: MN.
Country: US
Diagnosed: 01/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 9
cookimonster is on a distinguished road
Default Re: New member

Welcome Sunny,
I too am brand new to the group and already have found new strength from the collective wisdom. My husband is also struggling with ALS/FTD. I have been looking for this site for months as nobody on some of the other sites seems to be dealing with this double-whammy. I feel as though a window has been opened and even though what's coming in the window may be inclement the knowledge is quenching (sorry, for some reason I seem to be speaking in metaphor , as of late)
cookimonster is offline  
Old 07-03-2016, 08:33 PM #13 (permalink)
Member
 
Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
sunandsea sunandsea is offline
Member

Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
Default Re: New member

Thanks affected and cookiemonster. It is helpful to know others understand and to have a source of information. So sorry you did and are also dealing with this. When we had the diagnosis of als, I had no idea we would also be dealing with ftd and this experience would be such a lonely one. I hope you are both doing well this evening and weekend.
sunandsea is offline  
Old 07-03-2016, 11:32 PM #14 (permalink)
cookimonster's Avatar
New Member (Say Hi)
 
Join Date: 2016
City: Hastings
State: MN.
Country: US
Diagnosed: 01/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 9
cookimonster is on a distinguished road
cookimonster cookimonster is offline
New Member (Say Hi)
cookimonster's Avatar
Join Date: 2016
City: Hastings
State: MN.
Country: US
Diagnosed: 01/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 9
cookimonster is on a distinguished road
Default Re: New member

Good Evening Sunandsea,
Thank you for saying something I've been thinking for weeks now. I'm so amazed at how lonely I am and that can be with Jim sitting in the same room. Hard to know if he might be feeling the same way. Here it is a beautiful summer holiday evening...we would normally have been out on the water watching the fireworks and visiting with friends. Jims been asleep for hours and I must say I did watch a beautiful display from the house. I'm grateful in some ways that he can sleep peacefully and I do have this down time but yea, the nights are lonely...Tomorrow is another day...Hope you are having a lovely stretch of weather...It's been about as perfect as you can ask for here in Minnesota. Positive mojo coming your way...
Pam
cookimonster is offline  
Old 07-05-2016, 10:56 PM #15 (permalink)
Member
 
Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
sunandsea sunandsea is offline
Member

Join Date: 2016
City: Fairfax
State: VA
Country: US
Diagnosed: 11/2014
Interest: I lost a loved one to ALS/MND.
Posts: 142
sunandsea is on a very distinguished roadsunandsea is on a very distinguished road
Default Re: New member

Hi there Pam - hope you are having a good night. Just wanted to say hello in case it was a lonely one. Wishing you a good day tomorrow....
sunandsea is offline  
Closed Thread

Tags
decline, diagnosed, helpful, new member, night, reading, support, technology


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
New member... redrider67 Welcome New Members - Say Hello 3 08-02-2010 01:11 PM
New member Marcel the mechanic People With ALS - "PALS" 7 11-08-2009 08:54 AM
New member Marlene in Arkansas Current Caregivers (CALS) 20 04-09-2009 10:43 PM
New Member joy66 Suggestions, Problems or Bugs 3 02-15-2009 12:01 PM
Hello from new member beverly rees General Discussion About ALS/MND 6 01-15-2009 12:47 AM
New member say Hi to everyone! aannddy General Discussion About ALS/MND 11 01-01-2009 10:51 PM
new member donnab General Discussion About PLS 1 10-16-2008 11:27 AM
New Member ncdaddysgirl Current Caregivers (CALS) 3 09-22-2008 09:51 PM
hi I'm a new member m.lashley Welcome New Members - Say Hello 2 08-24-2008 09:18 PM
hello new member rjck1979 Welcome New Members - Say Hello 15 09-13-2007 03:08 PM


All times are GMT -5. The time now is 12:42 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016