Lots of tears today

[Jhill]

Hubby was diagnosed with ALS in March, after having the first sign of fasciculations in January. It has quickly progressed to mostly sitting in his recliner all day, with short distances using his walker. We've always enjoyed at least one trip out a week, but this morning he was too weak to get in the car, so we couldn't go. I feel like this is throwing new symptoms at us everyday without giving us time to adjust to the last. This was just a blow that has me crying all morning.

 

[Green Queen]

J, I'm so very sorry that your husband 's progression is changing your normal routine so quickly.
Each new day brings a new challenge, but if you look, sometimes really hard there will be a reason to smile.
We will always be here to help you brush away your tears.

 

[pittsburghgal]

Hi, Jhill, and welcome.

I wish I could hug you right now. I understand your pain. The rate of progression varies for each PALS. Often after a period of rapid progression there is a plateau with a relative stabilization of progression.

It is very important to have the equipment you will need on hand early. You need to start the process of getting a power chair since this can take a long time. My husband's took over 4 months. The AlS Association or MDA can often loan you a chair while you are waiting for your chair. There is excellent information provided at the top of the first subforum (general questions about ALS) listed as "sticky- anticipatory planning" that you should read if you have't yet. Read all of the stickies because they provide great information.

Do not hesitate to ask any questions or just unload here. We know what you are going through and will help any way we can.

Sharon

 

[Jhill]

Thank you so much, Sharon. I know I'm not alone in this. We just never expected it to happen this fast. ALS association has been wonderful & I thank them for being there.

 

[Jhill]

Thank you, Janelle!

 

[affected]

Hi Jhill, rapid progression is just awful as you are racing so much.

How is his nutrition, body weight and breathing?

 

[Jhill]

Thank you Tillie! He is still eating well & his breathing is good, for which we are thankful. It's mainly not being able to do much at this point. We had the evaluation for ramps, but waiting to hear back.

 

[affected]

Jhill is it a fatigue thing then?
Increasing his calories might help just a little, but conserving energy is really important too. Any ways you can help him conserve energy by helping him with daily tasks may help give him more energy to enjoy an outing each week.

No guarantees of course, but it could help for a while at least xx

 

[Jhill]

Tillie, he just tells me doesn't have the strength. I do practically everything for him now. His major goal every day is to get upstairs to his own bed(which takes two of us.) I know it's hard on him, but he so looks forward to it.
I know from reading other posts that your pals was very rapid progression and I'm so sorry for that.

 

[lgelb]

I'm sorry this is hitting so fast. There is a handle on Amazon that you put into the striker of the door for help getting in and out, that helped my husband. A step stool may help depending on where he's weak. Is he using a rollator? Can you take him around the neighborhood or on the bus in a manual chair? May be time to start thinking about a power chair as well.

 

[affected]

Thanks for your empathy Jhill, I can feel your pain.

When you go out is he in a chair or trying to walk?
If he is walking then it is past time for a PWC.
Search some of the threads by Steve Walker here (swalker) as he is such an inspiration in how he embraced the way the PWC opened his life up again.

 

[Jhill]

Thank you everyone for your suggestions. Right now he has to use the rollator and get down 3 steps to the driveway, which fatigues him. It has moved fast enough that the ramps haven't been installed & I will be calling about the pwc. I really just want to get him out, but it's not possible right now.
Thank you all for caring!!!!!

Joan