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trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
Hi everyone,
I haven't been on the forum alot lately. My hubby has had a slow progression, but it has all of a sudden sped up. He is able to use his arms and hands very little anymore, and his legs are suddenly going at an alarming rate. He now needs a wheelchair if he is out of the house. He can manage to get up only four stairs now without assistance. (we have 13) :-( We just put in an order for a powerchair, but what good will it do in our house? It is a bi level. We still have not been able to sell our home. It's been on the market for 16 months now and we have gone through 3 realtors and are now trying to sell by ourselves. We have lowered the price 3 times for a total of $30,000!

My hubby is able to do very little for himself anymore. I have no help except for our 15 year old daughter. And that is another story that is stressing me to the max! She is losing hair, and getting stomach aches and headaches. :sad: I just don't know what we will do if this house does not sell soon!

A friend of mine is trying to help me organize a fundraiser. Between what has been lost through Hubby's annuity and our home value, I feel like we are up a creek without a paddle even if our home does sell. And I am just so nervous leaving him home alone when I have to go out.

Sorry this post is so disjointed, but then again so is my mind lately. :? I guess I'm not sounding too positive today! But on top of everything else, our computers hard drive is going and the refrigerator started leaking a few days ago. I guess I just needed to vent.

If no one minds, I would like to ask for prayers. Thanks for "listening".

Linda
 

sharona

Distinguished member
Joined
Dec 8, 2006
Messages
488
Country
US
State
il
City
joliet
HI LINDA,
I will add ALL of you to my prayer list. Has your daughter had her thyroid checked? I will also pray that you are able to sell your home soon. God Bless.
Sharon
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
Diane

I will lift you all in prayer tonight!

There is a show on tv that I love on Sunday nights called ABC Extreme Maker. Many people with situations such as yours (houses that need handicap access etc.) are nominated and letters written and then are helped. I have seen many many people blessed. Give it a shot and write them a letter. I have never seen an ALS patient and they would also be helping ALS awareness by helping your husband and chosing your family for a makeover to help with that bilevel home.

Go for it Diane. I will pray that God show you favor and that this ABC Exteme Maker team bless you.

Patty :smile:
 

bossman

Active member
Joined
Aug 26, 2008
Messages
49
Reason
PALS
Diagnosis
07/2008
Country
CA
State
Ont.
City
Hamilton
I am sorry to hear of all the trouble you are having. I am in the same boat I cannot use my arms or hands legs are also on the way out. I have a 19-year-old son in school so I know what you're going through. My friends have put a fundraiser together for me tomorrow. I just hope I can get there. My prayers go out to you and your family good luck
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Linda, dear ... I'm praying for you and your husband and daughter. I know prayer works. I hope you find solutions ... or the solutions find you.

Blessings to you all.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Linda,

You and your family are in my prayers. Please try and get your daughter to the dr to get checked out.

We are here for you although we can't phisically do anything we can listen and pray.
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Lisa, I am so sorry to hear about your husband's progression. I will be praying for him, and the entire family. You have been such an angel, and God bless your beautiful daughter too. I hope your house sells soon, and at a good price too! I have been in a roller coaster "AGAIN." My husband has been hospitalized for 3 weeks or better. He had to have his right leg amputated from below the knee (Diabetes related.) That was like being hit by a train again! He has been in Rehab as a resident, for how long I don't know. His social worker helped me put him in for Medicaid, as he only had medicare. He should very easily be able to get it I am sure, I am praying, praying, praying! I have no time for myself. His facility is 12 miles from my house, thank God compared to the 40 miles (one way) I had to drive when he was hospitalized! The people at the facility are very wonderful. It was a great big change for him. He was taken via ambulance from the hospital to the rehab, and got there around 9:30 PM. The next day it was a rude awakening to him! God, let me tell you....when I got there early in the morning it got to him. He had an emotional breakdown, and kept telling me he could not believe this was happening to him. I was a nervous wreck, and was trying my damnedest to encourage him. He finally settled down. He is okay for the time being, and has learned to adjust to the new sorroundings little by little! I visit with him twice a day. I might have to cut it down to once a day, because I have no time for anything else. I guess this is part of the vows we had agreed to, eh?

I will be praying for your dear husband. I still read the forums, but rarely post anymore. I come in from visiting my husband, grab a bite, hold my 2 chihuahuas (poor babies), check emails (have no time to answer), and read the forum..........then crash! What a roller coaster ride. God bless us all. Please keep us posted.

Irma
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Linda, why am I calling you Lisa? I guess I'm losing it! LOL

Irma
 

Willow

Distinguished member
Joined
Dec 28, 2006
Messages
102
Reason
DX MND
Diagnosis
04/2012
Country
CA
State
East Coast
City
NA
Sending prayers for your family and for your home to sell soon. Maybe your daughter is feeling some of the stress that you are all going through. I sure hope things start ease up for you all soon.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Linda,

I'm hoping things make a quick turn-around for you! Would a chair lift be practicle in your house?

Tell your husband I said hello and we're all pulling for your family!

Zaphoon
 

clewbcg

Active member
Joined
Apr 9, 2008
Messages
42
Reason
CALS
Diagnosis
09/2006
Country
US
State
Utah
City
Heber City
Husband's progression has also sped up

Hi Linda
I'm so sorry about your husband and your struggles. My husband was diagnosed 9/06 and for a long time it seemed like he didn't really have ALS-his progression was that slow. Since January of last year though, it seems like it really sped up. He has very limited use of his hands, no one but me can consistently understand him now, he falls all the time and chokes on his food alot. Since January he has gone from 195 to 169. Our neuro says that what seems like a speed up is really just a result of all the cumulative loss of muscles. We go for our clinic on Wednesday and I know they are going to want to do a feeding tube as well as bipap and a wheel chair. My husband is against the tube, but I'm hoping that he will agree. He is really against a wheelchair, but his falls are really scary and he bashed his face up pretty badly last weekend. I work and I worry constantly when I am gone that he will fall. This week we got one of those emergency call buttons that he wears on a string around his neck. We got ours through our ADT security system, but I'm sure you can find it elsewhere too.
We have also had our house on the market for 9 months with no lookers. The house next door went to less than half of the original price and it is still on the market. We are trying to make this house work (2 floors) and just recently we had some friends say that they are going to get a crew together of men who can do carpentry to redo the doorway and inside of one bathroom so he will be able to get in with a wheelchair. We will pay for the materials. It is a blessing and a gift beyond my wildest dreams. Sometimes these things don't occur to people. It never occured to me to ask till they told me. Do you know anyone who might do this for you?
I hear the frustration and fear in your email. Just remember that every one on this website is pulling for you.
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
linda~

have you looked into getting a short sale approved from lender? do you have a first and 2nd mortgage or only first? If you need help or advice please pm me. My husband and I own a mortgage company and have been dealing with alot issues for clients in our area with dcreasesing home values. We also have a good friend whom owns a real estate office. AND my husband does finance planning. Maybe he could give you some advice on what to do with your home and your situation? Hang in there, It has been so hard in MIchigan with all the job loses. There are homes for sale everywhere.

What some folks are doing who cant sell home or do short sales are renting out thier homes and moving into or renting a different home. (maybe you could rent a one story home?) I was looking into this, I could not believe how many really nice homes were for rent. Look up on google and check it out. As the banks are getting stricter on lending money and peoples credit gets worse, and folks cant sell, renting homes is becoming a option for many.

Also, my cousin sold his home to a company that buys homes for disabled folks to rent or live in. Maybe you have a company like that in your area that could find you a home if your rented out yours or sold on a short sale? Just some thoughts that are on the top of my head but my husband is the guru on this stuff, not me. Let me know if you want to talk with him, we would love to help if only to give advice that you can trust.

you are in my prayers! and yes, send a video to extreme home makeover.......

april
 

t34gib

Distinguished member
Joined
Jan 2, 2009
Messages
234
Diagnosis
12/2008
Country
US
State
FL
City
Fort Pierce
Linda, of course your are in my prayers today and may you find a solution. We are all with you.
Nancy S
 

Vicki72

New member
Joined
Jan 21, 2009
Messages
3
Reason
CALS
Diagnosis
09/2008
Country
US
State
NY
City
Attica
Linda, you and your family are certainly going to be in my prayers tonight. I do no how you feel. I am caring for my uncle who came to visit at Thanksgiving and that is when we found about his ALS. he ended up in the hospital 4 days later and had a pet tube put in. He has bulbar onset. His disease has progressed so fast in these 2 months that he has been with us. He drove about 400 miles to our house and now he can barley walk. his speech is gone and he can't swallow to good. he is on oxygen now. He doesn't want to be fed much any more and is loosing between 3 and 5 pounds a week. i could go on and on but you probably no exactly what is going on. To make things worse my husband is very ill with end stage renal failure and doesn't want dialysis and 2 nights ago he fell down the basement stairs. ya, I do no how you are feeling. By the way, is your husband a Vet? If he is go to your nearest VA hospital and they will help you. That is where my uncle goes and we pay for nothing. They will even put ramps in for you. ALS is now being considered a service connected disease, and a pension will come to. I wish you the very best as with all the patients and families. It is good to just be able to vent. Thanks Vicki
 
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