Very upset and confused, need advice

[pudge44]

ok a few of you know that my husband has bulbar onset ALS ( DX Jan 2011), I need to desperately know how long the other parts of his body take to show issues, his drop foot started almost 3 weeks ago and today something else blew me away and i am sick to my stomach tonight because of it, he could not turn the key to start his car, he had to attempt this a few times before he could do it, please would someone answer me about the turning key, button clothes, pull up socks etc issues, how long does it take for these to become a major issue? this has really scared me, also LORI if you are out there I need to call you!

 

[Jellycat]

I know you are feeling really scared...and that's such a frightening feeling. Take a deep breath if you can. I don't believe anyone can answer the how long question even though it may plague you lots. There just are those marker moments which strike deep. If it's any consolation at all my pals (also bulbar onset) finger fumblings started within a month of diagnosis. Today we're at zero use but it took a while before having to have several goes at things turned into simply not being able to. And....there is life after buttons. Sending you a heartfelt hug

 

[pudge44]

Jelly cat ty so much for your reply I feel like I need a lifeline tonight, this bothered more than anything else to date because his driving has been his and my sanity, like i say this scares me and i feel a little unglued by it all, I love my husband and want to see him slow down in this illness I accept he has als but i am finding his progress very diffcult, he seems to be turning corners to fast for me to mentally grasp.

 

[BarryG]

Kim, I started slurring in July 2007 and it was a full two years before I had any limb issues. As Avril said, no one can say how fast or slow things will go so you can't let it eat you up.

 

[Jellycat]

Kim, I can really relate to the turning corners too fast. I think the changes take such time to absorb and sometimes we haven't had a lot of time to adjust before the next one hurries along on top of us. And then some changes feel more like quantum shifts because of what they represent. But you will get by. Let your love be all the glue you need.

 

[KC2U2]

Much love and hugs to you tonight Kim.

 

[jwife]

Kim, everyone's story and rate of progression seems to be different. There doesn't seem to be any rhyme or reason to the progression. My husband was diagnosed in April 2009. His first symptom was a drop foot. His progress has been fairly slow but steady. Today he is unable to stand and uses a power wheelchair. He still has his speech and is just starting to need supplemental nutrition by feeding tube. Watching this disease steal our loved ones is a heartbreaker. You are not alone and this forum is a great support system.
When my husband was first diagnosed, we used to say that today is as good as it gets. Only now do I fully realize the truth of that statement. Make use of each day. Celebrate the good days and survive the bad ones. Know that others understand and share your fears.
I wish I had a magic solution to share with you, but I'm afraid that all I can do is say that you are in my thoughts and prayers. God bless and good luck.
Janis

 

[trfogey]

please would someone answer me about the turning key, button clothes, pull up socks etc issues, how long does it take for these to become a major issue?

I'm very sorry to hear that this has begun to happen. It is always an awful time for the PALS and loved ones when ALS removes the last doubt about progression by showing up unmistakeably in a new region of the body.

To answer your question: nobody can say for sure, because it is dependent on too many individual qualities. In general, the bigger the muscle, the longer it takes to go away completely. It also depends on the intensity of the attack of the disease on the motor neurons and how successful the body is at reinnervating after a motor neuron is killed. Finally, in many people, ALS progresses steadily at one pace for a while, then it appears to slow down for a while before progressing again. Some PALS go through several of these cycles.

I feel like I need a lifeline tonight, this bothered more than anything else to date because his driving has been his and my sanity, like i say this scares me and i feel a little unglued by it all, I love my husband and want to see him slow down in this illness I accept he has als but i am finding his progress very diffcult, he seems to be turning corners to fast for me to mentally grasp.

The only lifeline I can throw you is to let you know you are not alone in your fear, your confusion, and your desire for a break from the monster. Lots of us will be praying for you, your husband, and your children for the next while. In addition, we'll be here with practical advice to help stretch your husband's abilities for as long as we can.

All you have to do is ask.

 

[laurel]

Kim my prayers are with you. We all love you and support you and your husband.
Laurel

 

[abbas child]

Kim, It's all been said. I pray you and your husband can find steady feet again soon. Praying for peace tonight, and hoping this slows down.
Ann xoxo

 

[pudge44]

Thank you, ALL of you, as I said earlier it unglued me, this was something I truely thought would not happen for a long time. I had just felt like I had turned a page as I had be mourning the loss of not hearing his laugh anymore or holding a conversation as he has limited speech, it is a deep loss and they just keep appearing, I also know he has his peg tube surgery in 25 days and the nurse is coming to the apartment to fit his bipap, he has only been diagnosed for 3 months so it really is a difficult pill to swallow, i hope als has no more tricks for a while as really for him to experience this all in such a short time is the pitts (((((((((((((hugs to you all)))))))))))))))))

 

[CoachMeg]

Just a note to say that I am praying for peace and strength for you and your husband. We are all in this together.
Love and light
Meg

 

[Alyoop]

Kim, so sorry. I HATE this illness! My thoughts are with you.
Aly

 

[crlester]

I know I have not posted in a while. I am training the person to replace me and I have 4 more days of work. I was diagnosed in December 2010 with Bulbar Onset ALS. My symptoms started last May. My symptoms so far are slurred, very slow speech. It is very monotone, but I am still speaking-- just very slowly.
It has started to slightly affect my left arm, mainly fine motor skills and some strength issues.
It is my dominant hand so that kind of sucks. Everyone I have met with this disease is very nice and helpful. I don't know if the disease itself is so overwhelming you just are thankful for every day you wake up! I try to keep a positive attitude every day and that's the best I can do.

Cathy

 

[jessicaberry]

cathy,
My dad started having sympoms of ALS in feb of 2010. It started in his left hand and he noticed it when he couldnt pick up a pillow. In july he was diagnosed. Today is April 1st 2011 and he is to the point where he can not hardly use niether one of his hands. my step mom says he has a hard time texting, getting dressed, showering, holding a cup or fork. It really depends on the person