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Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
661
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Becca, my heart goes out to you and I wish I lived next door. I am a typical grandma ( of 16 so far) and had risk pregnancies myself...plus I have a PALS too. He's doing great so far, so I'd be able to lend a hand. I hope you have the time to keep us up to speed on all this. Your journey is tough but I suspect you are even tougher. I just don't want you to burn out. You are a trooper and an inspiration. Take care and God bless.
 

shelleynshaggy

Distinguished member
Joined
Sep 2, 2009
Messages
280
Diagnosis
08/2009
Country
US
State
OH
City
Brunswick
Becca - glad you found this group. My husband was diagnosed 12/09 at the age of 36. I am 34 and we have 2 girls - Ruthie 3 and Mikayla 6. My husband's progression has luckily been slower then originally predicted but still to fast for me.

I agree 150% with shoot for the moon and not letting the rest of our time together being about "the disease." I know we have to live our life around this disease but I refuse to let it rule our life.

As for people and what they say - no it is not all pregnancy hormones. After listenind for way to long to a patient griping about not getting old because it's hard, this falls apart then that, blah blah blah I finally said "well you know sometimes being young is no picnic either - - at least you made it this far!"

Other times I bite my tongue - wanting to scream at people.

I hope you find comfort in this group
 

shelleynshaggy

Distinguished member
Joined
Sep 2, 2009
Messages
280
Diagnosis
08/2009
Country
US
State
OH
City
Brunswick
Also have you contacted your local ALSA to see about respite? It is usually not much - but it's at least something. Is he on medicare yet?
 

cris

Distinguished member
Joined
Apr 7, 2008
Messages
214
Diagnosis
12/2006
Country
US
State
illinois
City
Tiskilwa
Becca, I AM praying for you and your family! This is such a horrible time. And to be going through it while preg..... You have all the reason in the world to hold your head high!

We are in the same general region...but so for apart too. We live in Ill. I so wish it was closer. I don't go more than 1 hr. from home at any given time now. My hubby(PALS) was DX 12/06. We were 33 yrs ay DX. He will be 37vyrs next month. We have 3 kids..13,11and 9. We have, as a family unit, gone through a great many changes over the last couple of yrs. I can fully relate to the missing who and what you and your hubby were! I miss my hubby too! We try very hard to find ways to still connect. I work 3rd shift so we don't get to snuggle as much as we would like....but we try to whenever we can. There is a lot to be had w/ just holding on to each other w/ your bodies close.

I don't know if IN has a program that will pay for a caregiver to come in? Ours is called "DORS" It is run through the state health. They pay my sis-in-law to watch him. She gets paid for 112 hrs a month at 10$ an hour. Maybe you could find some thing like that. Then you would have a little time out of your home and away from your "boys". You should also get him on Medicare and disability!

Fell free to send me a mess. anytime.....We are all pulling for you! And remember you are only human!
 

set me free

Active member
Joined
Aug 25, 2010
Messages
41
Reason
Loved one DX
Diagnosis
01/2009
Country
TH
State
TH
City
Bkk
็Becca,

Sorry to hear your story. I pray to god to give you strength and a peaceful mind. My mom also has this disease. I cry and cry alot and tear does change nothing.
 

Mick n Ang

Distinguished member
Joined
Jun 30, 2010
Messages
174
Diagnosis
12/2008
Country
UK
State
England
City
Bolton,Manchester
Becca,
how we all can relate in some way to your story but what a special person you are, glad you found your new family here who I know will support you in anyway we can even if it is only to listen or vent with. hugs xxxx Ang
 

Judith

Distinguished member
Joined
Jan 31, 2007
Messages
341
Reason
DX UMND/PLS
Diagnosis
12/2006
Country
US
State
CA
City
Yucca Valley
Becca,
My heart goes out to you, as your burden is so heavy for you to bear alone. I know it can be upsetting the way people change when one becomes ill. I had bulbar onset, so my speech went quickly. People treat me as if I cannot hear or understand, so they speak loud and slow…they mostly speak to Steve (husband) instead of me. I had to come to the realization that they really do not know how to act. This is a new experience for them, so I wouldn’t feel angry. I think you have a lot on your plate and your nerves are shot so it doesn’t take much to set you off.
Those in your church who seem genuine about helping out, accept it if it is agreeable with your husband, no matter how small the offer might be. Are you involved with a bible study group at church that could supply meals every so often, or help with cleaning or yard work? I know there must be some at your church with the gift of serving/hospitality that would love to minister to you and your needs. If you haven’t already, I would sit down with your pastor and pour out your heart…he may have some answers for you.
 

DCL1964

Active member
Joined
Mar 22, 2010
Messages
37
Reason
CALS
Country
US
State
VIRGINIA
City
WOODBRIDGE
I still can't understand why most families don't seem to want to help. My brother's adult children do nothing to help. I understand they have
their own lives to lead but what about mine? This is their father. I was there when my dad had his heart attack and when he was diagnosed and died from cancer.
 

BrianD

Distinguished member
Joined
Sep 15, 2009
Messages
415
Reason
PALS
Diagnosis
08/2009
Country
US
State
Colorado
City
Colorado Springs
Becca,

As Ted mentioned above, it sounds like you are involved with a church. Do you have a dear friend there (or outside of the church for that matter of course) that you can ask to be your advocate in setting up additional help. If no one comes to mind, perhaps you can ask your pastoral staff if they might recommend someone in your church.

The MDA has hooked up with an outfit called Lotsa Helping Hands to provide an easy web-based way to coordinate people to help. The link is provided below:
Lotsa Helping Hands - Coordination Service

I personally use this system... and it is very easy to use and works. While I am currently only using it for rides various places since I'm not driving any longer, a friend of mine whose wife has ALS uses it to help with meals, grocery shopping, housework, etc. It is working for them as well.

I believe the key would be to have someone else tackle the time to coordinate... so you aren't adding additional tasks to your already limited amount. That way you were only having to work with this one individual.

I hope this information helps!

Brian
 

stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
City
coon rapids
Becca-
I am so sorry that you and your husband have so much to deal with. I could not imagine being pregnant on top of taking care of my PALS and my kids. I wish your husband's family was more help to you both. What are they thinking? I have come to grips with the fact that no matter how many people tell me they want to help, I am the only one that will always be there to take care of my husband. You are such a strong person to have made it this far!

I know what you mean about people who just don't think about what they are saying. I often listen to co-workers joke about their "lazy" husbands or talk about their great weekend plans. I know they have every right to complain about their husbands once in a while or have a wonderful, adventurous weekend, but it's still hard to be a part of those conversations knowing that my husband can not walk, talk, eat, or move anything except his head. My weekend consists of making up for everything I couldn't get done during the week, then it starts all over again.

I pray that you will find the strength and the help to keep doing what you have been to take care of your family!
 

Jason's Dream

Distinguished member
Joined
Sep 5, 2010
Messages
310
Country
US
State
As Usual
City
On My Own
Thank you to everyone for your replies and support. At this point I don't know what else to do.

Jason is on medicare. Currently the ASL clinic sees him ever 3-4 months. ALSA helped us fast-track disability, but SSi was approved then taken from us, and now SS says that they payed us $450.00 too much, and so they are deducting it by month from his disability. Not sure about getting healthcare in to help with his baths, but with me being in the third trimester of pregnancy, I really need relief, and if he isn't willing for his or my family to give him baths, then I need to get health care in here. I think he would be classified as bulbarian as it was the 2nd symptom that started, and now at this point (just 8 months later) his speech is to the point where I have to translate for EVERYONE. Still waiting on his motorized chair to be built. They said it would be 45 days until he gets his communication device. We are on a waiting list for a lift chair. We currently have a patient lift, hospital bed, rollator, and he has braces that he doesn't wear.

I doubt my church seriously knows how they can help, or that people would be willing to help in the ways that I need the help.

His family is adding more stress and emotional worry to my already full plate. His mom has thoroughly ran her mouth to the family and ruined my reputation and I have heard rumors of threats that as soon as my husband passes, they will be looking to gain custody over my children. My husband doesn't see it, doesn't hear it, and thinks that it would never happen, because he thinks the best in people.

That being said, he is getting to be really hard to deal with. He has dropped his roll as husband.. PALS seems to define him, and so I am no longer his wife, but his caregiver. My feelings don't seem to matter, my high-risk pregnancy with which I am on restrictions now doesn't seem to phase him, when he demands that his needs be met. He doesn't talk to me as a wife, or a human being, just merely concerned that his needs are met. Even the strife HIS MOM has caused, he has told me he just wants it to end. Like I am suppose to fix what HIS MOM did, when she is the one that needs to clean up her mess and apologize.

My parents surprised us by saying they would be gone 4 days this weekend. They are celebrating thier 44th anniversary. Well, while I don't begrudge them the trip, I am on restrictions, and Jason is needing more care then I can give alone, and my son is more then I can handle by myself at this point. Just feel left and abandoned with EVERYTHING on my shoulder, even though I am on restrictions myself. But my health, or the health of my unborn child doesn't seem to matter to anyone.

Just soo frustrated, soo worn out... feel like I have been abandoned and no one is here to help.

~ Becca
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
992
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
Becca,I feel so bad for you! I can't imagine taking care of a little one, pregnant again, and dealin with all you are. Why would his mom assume that she is going to get custody of your children, that is crazy! I wish I could give you magic words to make it all better, just know that I care!
 

Judith

Distinguished member
Joined
Jan 31, 2007
Messages
341
Reason
DX UMND/PLS
Diagnosis
12/2006
Country
US
State
CA
City
Yucca Valley
Becca,
I don't know what to say. Words will not help, so I will pray for you.

Judy
 

Pat Paine

Distinguished member
Joined
Aug 20, 2010
Messages
186
Reason
PALS
Diagnosis
03/2010
Country
US
State
California
City
Benicia
Dear Becca,
I am heartbroken to read of your situation. Since he has Medicare,you should be able to get
home health,ask his MD for an order for a home health eval. Can you get some counselling from your health care provider,or church or ALS clinic? It does help. I cried for 3 months after my diagnosed,I told my husband to hug me when this happened, it reallly helped-ask your kids to hold you close. Yes I thought God had abandoned me too, but since I accepted the diagnosed,I know He is near and loves me.I will pray for you and your family.
Pat
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,168
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Dear Becca, my heart goes out to you. I wonder if Hospice could be brought in, and you get help through that avenue. I'm praying for you all.

Hugs,
Ann
 
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