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Blondrea

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I am so sad. I was praying for MMN, but EMG yesterday indicated "no way." I knew it was a remote possibility, but having even a flicker of hope was so important. So I am wondering, what do we do now? I am so unsure. Do we travel the world? (Though I have to keep my job to support us.) Install ramps? (We live in a house on a hill, with a long windy staircase.) Live for today? Plan for tomorrow? Enter a catatonic state of depression? All of the above?

So sad.

Andrea
 

Nikki J

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So sorry. I know those were rhetorical questions but the answer is all but the last. Do figure out an answer for those stairs. Stairs get hard fast and are a great place for falls
 

BlueandGold

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I'm sorry. I know what it's like to hold on to something else until you no longer can. Educate, educate, educate. Plan, plan, plan. I hear you about thinking of traveling, making the most of the time you have left. If you are able financially, DO IT! However you are probably like my wife and I. I am on disability now so my wife has to continue working. There are things we would love to do but we have to just adapt and enjoy the little things.

Vince
 

Atsugi

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Isn't Michael a veteran? You also have the option of buying a new home in a better location through a combination of several VA benefits. Ask your rep from the Paralyzed Veterans of America to help you file the paperwork. First, print the 10-page PDF document in the sticky post at the top of the General Discussion subforum.
 

scaredwifetx

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tx
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I am so sorry Andrea and feel your pain. I must continue working and it is getting harder each day to keep up with everything. If you can afford to travel and enjoy this time together do so. My husband is not a veteran so we are having to pay for a lot of things and cannot take any time off. I have done my best to prepare but the snags with the home remodeling, vehicle, trying to keep up with insurance and equipment is al very hard. Do what you can afford to do and what your heart leads you to do. Make plans together and do what is best for the two of you. Depression has and will set in but doing what you can do together will help.
 

notBrad

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04/2015
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So very sorry to hear that. Initially I was in same basic situation - got an emg that showed lmn damage and was hoping for the best.

As far as what to do now... first things first, take a few days to just digest everything and deal with the shock. For us the next course of action was to downsize the monthly expenditures ASAP. Then we started planning next steps from there.

We ended up getting an RV so we could travel while I was able and also to able to eliminate location issues from preventing me from being able to attend a clinic. At some point we may settle back into a house but who knows...
 

lgelb

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Research selling or renting the house, how portable your job is, where you would want to/be able to live, stuff like that. Don't choose catatonic depression, Andrea -- I know you won't.

You say, "What do we do now? I'm so unsure." He is, too. Talk to each other about your deepest fears and hopes. Then do the best that you can to support his and your best possible future. In between planning, talking, mourning the years you will not have together, do some living for today, some pure fun, something new and something familiar.

It is a balance. ALS is a tragedy. It's OK to cry. Just don't forget to laugh and live.

Best,
Laurie
 

chally

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Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
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renick
hey andrea, you both are about to go on a roller coaster ride of emotions so buckle-up. if micheal is a vet as i am i can tell ya the va is super helpful with everything. get a pva rep to help push things thru the pipeline. you have to stay pro-action with all things va. they will help! cry, laugh but don't dwell on the negative. a positive attitude is the best but easier said then done at times. post with us often, we are here for each other and the cals here are the tops with a wealth of info on the ins and outs of daily LIVING, so lean on us! more will be revealed as you move on in life. go one day at a time . much love chally
 

Blondrea

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Messages
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Reason
CALS
Country
US
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CA
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Sherman Oaks
Thanks, everyone, for your hard-earned words of wisdom. I really appreciate it. Unfortunately, Michael is not a vet. He served in the Reserves, but not for long enough to qualify for help. Darn. And we love our little house. It is a little tree house with huge decks and lots of trees and animals. I would sure hate to leave it, but oh, those stairs. Okay, I guess it is now time to start hoping for trials to be successful. We are in contact with the professional at Cedars who connects PALS with trials around the country. I will put my hopes there.

Thank you again. It is so wonderful having a community of people who truly know how you feel.

Andrea
 

Nikki J

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Joined
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Messages
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PALS
Diagnosis
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Country
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I am sorry I can just picture the house and setting! I am guessing it would be impossibly expensive and logistically difficult to install an outside lift of any kind. If so, even if the house itself is suitable you need to take action soon before your beautiful little home turns into a prison. This stinks indeed. Do you have a particular trial in mind? I thought Cedars was a good place for research. I expect you have looked over the clinical trials government site?
 

notBrad

Senior member
Joined
Feb 26, 2015
Messages
628
Reason
PALS
Diagnosis
04/2015
Country
US
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OR
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Thanks, everyone, for your hard-earned words of wisdom. I really appreciate it. Unfortunately, Michael is not a vet. He served in the Reserves, but not for long enough to qualify for help. Darn. And we love our little house. It is a little tree house with huge decks and lots of trees and animals. I would sure hate to leave it, but oh, those stairs. Okay, I guess it is now time to start hoping for trials to be successful. We are in contact with the professional at Cedars who connects PALS with trials around the country. I will put my hopes there.

Thank you again. It is so wonderful having a community of people who truly know how you feel.

Andrea

Go through Craigslist and other sources, anyone who has bought a house with lifts already installed (elderly person passes on kids sell the house "as is", etc...) practically gives them away.

If you can find a creative solution for him to traverse stairs it sounds like those decks and trees would be wonderfully comforting to him & you as you deal with this.

One of the things I like most about the motorhome is opening the windows and having all the trees so close, it gives me a real sense of peace.
 

bear1973

Distinguished member
Joined
Mar 12, 2015
Messages
129
Reason
PALS
Diagnosis
05/2015
Country
CA
State
Ontario
City
Barrie
Sorry to hear, Andrea. I was diagnosed not that long ago either and it's been an enormous grieving process for me. From everything I've read on this site, PALS have their own way of coping. you mentioned keeping your hopes up for research opportunities - I am still doing the same thing as a way to keep my hopes alive, as well as trying different alternative supplements. I have to keep in this mindset right now - the future, as a single person with little family support, is just too frightening and stressful for me to deal with right now. So...if you can keep the house keep it...if not, notBrad has a great suggestion re: Craigslist. And as for travel...I've been fortunate enough to have a job that pays a good LTD package, so I can travel and am travelling, even though its much more difficult than it used to be. Emotionally, the idea of "do what you can while you still can" is depressing, although logically it makes sense. As long as you do what you can to best cope with this awful disease, then at the end of the day you're victorious in my eyes.
 

Green Queen

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Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
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4/2016
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AUS
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Western Australia
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By the beach
Oh Andrea. My tears are for you and Michael.
We were all hoping and praying for a different outcome.
I know you have beautiful friends that will continue to support you both however they can.
What can I say that will bring a smile to your face, if only for a moment?
I can so picture you in your house, it seems very well suited to the life you love. I'm so hoping there is an affordable, practical solution for the stairs.
Give Fancy Pants a great big cuddle. He can handle tears, ranting, questions and happy times. As can we. We are with you all the way. Forever.
God bless you both, my dear, dear friends.
Love Janelle xxxxxxx
 

Mtzu

Distinguished member
Joined
Oct 24, 2014
Messages
186
Reason
PALS
Diagnosis
04/2015
Country
US
State
California
City
Los Angeles
Thank you all for you kind words, advice and encouragement. It's very much appreciated. I didn't expect a different outcome but it's still hard to take in. Something all of you already know. So, I guess we are just turning another page in this very long chapter.
-Michael
 

Blondrea

Active member
Joined
Oct 27, 2014
Messages
88
Reason
CALS
Country
US
State
CA
City
Sherman Oaks
Thank you, everyone, for your words of kindness. Very much appreciated.
Andrea
 
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