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sweetpea

New member
Joined
Dec 21, 2006
Messages
7
Reason
CALS
Country
US
State
michigan
City
cadillac
I'm the care giver of my 56 year old husband who has Bulbar onset ALS, mirroring exactly the way his dad was who died of ALS in 2000. I feel as tho I am in the eye of a terrible storm, whirrling about and not being able to stop = this is happening SO FAST. He was released as reimbursement officer at our local Community Mental Health office on Jan 6 2006, due to about 2 years of less and less ability to communicate effectively and concentrate on his work. He had been with the agency 24 years.

In January 2006 (and we have been doctoring about 2.5 years prior to this to figure out what was wrong), he was able to speak, write, and use computer, but rather poorly. Now, since about October 2006, he is unable to talk at all. He said the word "MOM" today (that's me), and SNOW on thanksgiving day. I guess where the "whirlwind" feeling comes from is what if he needs something, and is not able to communicate it ? I would hate to think I deprived him of a need due to this inability to communicate.

I guess why I am email is this: isn't this a pretty fast trip we're taking, here ? He has severe problems eating, chokes on saliva, and is drooling alot now. He has difficulties at night when he goes to bed - he's choking, spitting, just not being able to "clear" the stuff in his ?throat? His last lung capacity test showed "marked decrease" per the nurse.

I have a million questions, and we have great doctors in our small, rural community. We take each day as it comes, trying to make it the best we can. "WE" is our 22 year old daughter who is taking care of her dad, and our 18 year old son who is a senior this year, and me. (Plus the 2 cats and the dog that my hubby, Gordie, really loves).

He is so different - that startles me, I guess. His personality is very child-like, and the docs tell me there's the Frontal Lobe dementia with him, just like his dad.

I'm not sure if this is appropriate for an introduction, but since hubby does not speak any more, I CRAVE talking to someone !~!

Thank you all for being here - I can only hope that through all of this I can help someone else........

beth a.k.a. Sweetpea
 

Harper

Member
Joined
Nov 28, 2006
Messages
13
Reason
PALS
Country
US
State
Texas
City
Dallas
Questions

Beth ...

Your introduction was specific and informative ... very good, you needn't make any apology.

The ALS Foundation internet site has a lot of good information ... links to the Journal of Neurology with specific abstracts about the disease.

Whirlwind is a good description ... I was diagnosed 11 November 2006 ... went to my neurologist last week ... he told me if I had plans to do anything -- best do them now.
Apparently the illness effects people quickly or slowly -- depending on many factors.

The folks on this forum are kind and informative -- they've lots of experience and practical information so any questions you may have can be answered. You may also want to look at 'Patients Like Me' ... another ALS sponsored website.

God bless you for standing by your man.

Harper
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Welcome

Hi Beth -

Glad you found us too! No need for you to be all alone out there.

How are your kids holding up? This must be quite a challenging experience for them. I worry a lot about how mine will cope over time as things get worse. My thirteen year old told me today that it was OK if I become disabled but if I were to die "that would not be cool".

Liz
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Welcome to the forum Beth, I'm so glad you found us. I just found this site a short time ago myself, and I have no idea where I would be now without it. :shock:

Feel free to jump into any thread and ask questions, vent, whatever. We are all here for each other, to help make this trip as painless as possible.

The most important thing to remember is you are not alone. During the course of this disease a lot of weird thing come up, and usually there is someone here who has an answer to whatever you may be facing. Sometime the search function at the top helps also to find out information about something specific.

God Bless,
Capt AL
 

trustinggod

Distinguished member
Joined
Oct 21, 2006
Messages
154
Reason
Lost a loved one
Country
US
State
CA
City
Lake Forest
Beth,
Welcome to the group! Ask away - I'm pretty sure someone will be able to answer most any question you have.

Have you been intouch with the ALS Assocation in your area? Have you thought about having a hospice team come in?

Don't forget you are not alone. God Bless you and your family and Merry Christmas!

Jeanne
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Beth. Welcome to the forum. Being in a rural area makes it a bit more difficult to get to an ALS Clinic. Has your husband been to one or is a local Neuro looking after him? AL.
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Hi Sweetpea...Just want to let you know that you are not alone. Your husband is experiencing the same symptoms as my 75 year old mom. It is very difficult and we take it one day at a time. She is extremely mobile and fine motor skills are excellent. However, She is unable to speak since July 2006.She tends to write things down for us. She has severe drooling which she takes medication for but only helps very little. She has great difficulty eating where she now has to puree all of her food. She uses the Magic Bullet which is a little blender to blend her food. However, we are now finding that she is choking almost with every bite. The next option is a feeding tube. She is not too keen on that but she may not have any other alternatives. She also has some difficulties getting to sleep at night. She feels like her throat is closing. She finds she is able to settle down better when laying on her right side. My only suggestion is to talk to your neurologist and get in touch with the ALS society. They are very helpful. Unfortunately this is a nasty disease. God Bless and Merry Christmas. Anne
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi anne. When I could only get my breath lying on my right side was when they found out I needed a Bipap. It might be time to address that issue with your mom. AL.
 

sweetpea

New member
Joined
Dec 21, 2006
Messages
7
Reason
CALS
Country
US
State
michigan
City
cadillac
Great to hear from you. This is all happening too quickly, and I fear this will be the last Christmas with hubby. I've chosen SweetPea as my "screen name" because just before we got confirmation of the diagnosis, we got this little kitten - his name is Murphy - and every time "baby" Murphy wanted to take a nap, he chose my hubby's lap to sleep on - truly our little "Sweetpea" Murph was a Godsend during this time - we had "someone" to keep the smiles on our faces. Every Morning when I left for work, "Sweetpea" would crawl into bed with hubby - and they are still best of friends.

In the beginning I didn't know what was going on - thought it was marital problems - and was ready for divorce. Then this hit so fast and so hard, I believe that God is telling me this is where HE wants me to be. Our marriage is not only between the two of us, but between the 3 of us: a covenant between God, Gordie, and me. A convenant not to be broken.

Thank you for being "here". I will keep you in my prayers every day - God will bless you, too, my friend, for holding hands with the rest of us in this "boat"

take care - beth
 

sweetpea

New member
Joined
Dec 21, 2006
Messages
7
Reason
CALS
Country
US
State
michigan
City
cadillac
Thanks, Al. We travel to Traverse City for our neurologist - he's about 50 miles away. He also treated hubby's dad's ALS and mom's Parkinsons - so he knows the family well. Thanks, too for the comment to Anne about sleeping on your right side - I think we need to keep track of hubby, as he is having more difficulty "clearning congestion" when he rests on his back or his tummy.

God bless all you do for us - beth and family
 

sweetpea

New member
Joined
Dec 21, 2006
Messages
7
Reason
CALS
Country
US
State
michigan
City
cadillac
Yes, my kids, are coping - my daughter internalizes everything and my son "blows" from time to time. Either way is fine with me - they have to grieve in their own way, because, really, they have already "lost" their dad. The crazy thing about this marriage is that MY FATHER died of limb onset of ALS before Gordie and I were married. THEN Gordie's dad came down with the bulbar onset when we were married about 18 years - my son looks at me (he's 18) and says "mom, we don't have a chance" {to avoid this disease}. I have no words for him - we talk, but I doubt that I comfort him.

You take care - and I don't mean that lightly - we seem to see things differently than the rest of the world - I almost think our relationships are deeper after this diagnosis than before - and that's a GOOD thing....beth
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Thanks Al for always being there with good advise. My mom has seen the respirologist at the ALS clinic. He examined her and felt it was the tongue that was getting in the way when she laid down on her back. She does not have movement in the tongue. He talked to us about the bipap but he did not feel she needed it. My mom has now made her decision that she will go for the feeding tube. Christmas dinner was a disaster. She was eating her pureed food and was doing really well until she started to panic and felt like she couldn't get her breath and felt like she was choking. It took about ten minutes to recover from it. Then of course that was it for dinner. I am amazed she has not lost weight. I have emailed Myrna concerning feeding tube and hopefully something can be arranged as soon as possible. I guess we have been in denial and praying we would not get to that point. I hope by getting this it will free up some of the stress, since she is still very active and mobile.

I hope you and everyone on this forum has had a great Christmas. God Bless. Anne
 
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