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sunandsea

Distinguished member
Joined
Jun 17, 2016
Messages
144
Reason
Lost a loved one
Diagnosis
11/2014
Country
US
State
VA
City
Fairfax
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.
 
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!
 
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,
 
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
 
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.
 
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
 
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
 
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
 
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
 
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, 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
 
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)
 
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.
 
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
 
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....
 
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