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shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
My husband was on the scales again today 10lbs in 14 days. The breathing problems are getting worse, they are starting to happen even at rest now. Hands, arms, shoulders shrinking each and every day. I noticed this evening that he has tic's in his chest now, not just his arms and hands. His fingers are beginning to draw up to his palms, and the cramping is dibilitating, they are in his chest, diaphram area very bad tonight, but I think even worse is his attitude towards things, he came home this evening very low in spirits, He called a very old friend and I overheard him explaining how he is feeling, he said he feels like his body is shutting down, like he has no control over his own body anymore, this isn't like him at all, he was a strong person, a person whom everyone turned to because of his wide shoulders, and caring attitude, but now, I don't know what to tell him, his neuro appt isn't until the 16th, I try to keep him upbeat and happy, carefree, but he knows his body better than anyone, and there is something wrong with him. I pray we make it til the 16th, Everyone say that prayer with me.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
shelly,
Yes, I will be praying with you. I hate that you are having to go thru all this with your husband. I was diagnosed 6/3/08 and it has been an uphill battle, but we are making it slowly but surely. I find it very relaxing to get on here at night after our boys go to bed and just read. I think it helps to keep the faith alive!
Now tonight at midnight my oldest will be 18, so I might just stay up a little bit later!
Never give up,
Never let up,
Never lose faith,
brenda
 

shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
Thank You, we all need to keep the faith. I am sorry to hear about your diagnosed, but am glad you have found some answers, I know that sounds crazy, but I think you know what I mean. In a way knowing brings some kind of closure. Your pretty close to us geographically. I have found it truely amazing how many people have this disease. I will keep you all, each and every one of you in my prayers. Tell me about yourself Brenda. Thanks again Shelly
 

shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
:)I hope your son has a wonderful birthday, my son just turned 17, and our grandbaby 3, wow, where did all the time go.
 

brendapals

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Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
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US
State
any
City
any
Oh, I hope he enjoys it too-he's already told me he gets to buy a lottery ticket tomorrow!
The even more fun part at my house is our middle one turned 15 last thursday and our "little surprise at 40" will be 8 in Nov. All boys, so no weddings to pay for, just a bunch of rehearsal dinners! hahahahaha
talk soon,
brenda
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
shelly,
I just remembered, go to the post "dire diagnosis"- it will give you a quick synopsis of my life history!
talk soon,
brenda
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Shelly I have said a prayer for you and your husband. It is good that he picked up the phone to call his friend to tell him how badly he is feeling--much better than holding it all inside or always using you to vent to (as he knows how much you have on your shoulders too). I think it would be fine for you to phone his neurologist and tell him what you wrote here. Perhaps that can bump up his appt. Especially important that the doctor know about his breathing problems increasing, andyou shouldn't hesitate to take him to an emergency room if you or he is really worried.
Laurel
 

Charlotte Feldman

New member
Joined
Sep 3, 2008
Messages
7
Diagnosis
12/2007
Country
US
State
Ohio
City
Berea
Let's Be Loud

Dear ALS Group,

It does help to know that my husband and I are not the only ones going through this unholy thing together and I can truthfully say, " Yes, I know how you feel," because I do.

Today I came across a name, Tom Coburn. Mr. Coburn is one of the United States Senators from the great state of Oklahoma and, although a doctor, an opponent with a face we can focus on.

Mr. Coburn is the prime barrier to the passage of the recent ALS registry bill in the Senate. Mr. Coburn apparently felt it was not important to pass this bill for whatever reasons, and put it on "hold," until it finally reached a vote and missed passage by eight votes.

So while we are all supporting one another and praying for one another and weeping and empathizing for one another let's say a prayer for Senator Coburn. May God bring him to a realization of what he has done. May he find out what ALS is like, if only in a dream. May he stuggle with the terror, the hopelessness, the emotional and monetary cost of this nightmare. May he live struggling to live as hope fades and let us let others know how far he has missed the mark as a doctor and a human being.

I thought the first pricipal of medicine was, "DO NO HARM." Apparently, Dr. Coburn has other axes or scalpels to grind

Charlotte Feldman
spouse of an ALS patient
 

barbell

New member
Joined
Sep 4, 2008
Messages
3
Reason
CALS
Country
US
State
Georgia
City
Newnan
thankful for some things

Hello shelly2612. Be thankful that you spouse can speak and tell someone how he feels. My husband was diagnosed in 2006 and hasn't been able to speak for over a year. None of knows how he feels. Thank you all for being here.
 

shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
yes, we are thankful he can still voice his hurt and frustration, even in the darkest times there are still reasons to be thankful. If I had one wish it would be for this disease to be wiped from the face of this earth. We are seeing Dr Steven Kolb in Columbus on the 16th has anyone ever seen him before?
 

sisgldnhr

Distinguished member
Joined
Feb 2, 2008
Messages
129
Reason
CALS
Diagnosis
03/2008
Country
US
State
OHio
City
NW
columbus Dr.

Shelly,

I have heard of him....it was all good :) My husband goes to Columbus also, we go to the ALS Clinic at OSU, Dr. Steven Nash is my husbands doctor.
 

hopingforthebest

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

Was wondering if your husband is taking Rilutek? My husband lost 15 pounds when he was on Rilutek and was very sick. His disease is from his waist up (arms, neck, diaphram) but his legs still very strong. His voice not affected.

I know that our ALS doctor was very very concerned with the weight loss. They seem to see progression faster when patient loses weight. Let your husband's doctor know about fast weight loss in case he want to see him sooner. I give my husband a shake daily, along with his meal, it is 600 calories and taste good, so he says, I won't dare taste it for fear of gaining! I have the name of the shakes, and not sure if I can give you the web address so let me know and I will send you private post.

This is such an aweful disease and our husbands feel so powerless losing muscle etc. I cannot imagine what they feel and sometimes I feel helpless.

Stay strong Shelly as your faith will get you through, one day at a time.

Let us know how he is doing please.

Patty
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Those kind of links are OK. It's ALS related, you're not trying to make money from it and it's not some scam miracle cure I hope.

AL.
 

CB1977

Distinguished member
Joined
Aug 29, 2008
Messages
210
Country
US
State
oh
City
columbus
Shelly-

I a very sorry to hear about what is going on with your husband, it has to be so hard. I to am having symptoms, many similar to your husband but not as extreme. I have only been having symptoms for 10-12 weeks though. I live just north of Columbus so I will also be going to OSU in late Oct. Please keep us updated as to how your experience at OSU and if you get anywhere with a diagnosed. Has your husband had an EMG or MRI of brain yet?

CB in OHIO
 

CB1977

Distinguished member
Joined
Aug 29, 2008
Messages
210
Country
US
State
oh
City
columbus
Shelly- my thread is "31 yrs old, could this be bulbar onset? Please respond.."

CB in Ohio
 
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