I am new to this forum and want to say Hi

[HeatherFeather]

Good morning to all,

Just wanted to introduce myself as being new to this forum.

DH had a sore calf muscle on our cruise last April - he jokingly complained it was because I had him going up and down the stairs for exercise instead of taking the elevator.

Now he can barely walk in a walker. We are going to have him fitted for a wheelchair next Tuesday and will be putting in a stair climber for our 10 stairs from the first to second floor. That is until he cannot use it any longer, then we will transfer furniture from downstairs and upstairs.

So he has limb onset. but I noticed in the last week or two, he has trouble with stuffy nose and he's clearing his throat ALOT. He has trouble with certain smells, like my flavored coffee which I now have to drink in another part of the house. Certain smells choke him. He hyperventilates a lot with panic attacks and has to have a fan on all the time. He takes Ativan for his panic attacks - lately daily and sometimes twice a day.

His next visit to the Neurological center is January 5th.

He is going downhill SO VERY FAST since his little limp in the early summer - I keep feeling like we are in a nightmare and we'll wake up soon.

I just finished watching the movie, "Tuesdays with Morrie" and this touched me so much - I watched the whole thing through my tears. Ron and I LOVED to do ballroom dancing - Morrie loved tango. The way Morrie's symptoms started (car - foot etc) looked so much like what happened to Ron with his left foot.

He has no appetite, it's a constant struggle even tho I mentioned he has to keep his weight up... at least Ensure Plus helps a lot.

OK, enough of this pity party - thanks so much, everyone, for 'lending me your ear'.

Have a happy Sunday xoxoxo

~ Heather ~

 

[Vincent]

Welcome. Sorry you find yourself here.
Vincent

 

[Atsugi]

Hi Heather. Welcome. Sorry to hear about your DH.

Many of his symptoms seem related to anxiety, which is understandable, of course.

As a caregiver, you're going to be very busy. But don't forget about yourself. You have to split your time and energy between taking care of your DH and looking out for the needs of the survivors.

ALS is a complicated disease. You need a pulmonologist on your team.

Stay in touch and let us know how it goes.

 

[dalvin]

Welcome....

 

[Annie's Phil]

A very warm welcome to you Heather. You'll find lots of listening ears eagerly lent here.
-Phil

 

[skipper66]

Welcome Heather. But, so sorry for your need to be here. My dad is 80 and has ALS and it is limb onset as well. His progression was quite rapid at first and then slow down. Hopefully, it will slow down for your husband as well. One never knows with this monster. You will find alot of support on this forum and sometimes we even managed to laugh at times. Write and tell us more about yourself? How old is your husband? Do you have children? Looking forward to getting to know you. Hugs, Kim

 

[Graybeard]

Welcome to Heartbreak Hotel.

 

[Diane H]

Three hours on the forum and you are already going to get some unsolicited advice! I wouldn't greet you like this but your plans for a stair climber are in the works already.

I suspect that the usefulness of a stair climber will be very limited since walking is difficult for him already. He will have to be transferred from wheelchair to stair lift and unless you have a large open area at the base of the stairs, he will have to walk several steps, turn around, and sit on the stair lift. And once at the top of the stairs he will still have to make it to the bedroom. A second wheelchair(manual) will work, but once again space may be a problem.

Because his legs are so weak you will be lifting him to stand if you are not already. Don't plan on being able to do this for long. It will get harder as he finds he can't lock his knees or stand up straight. Your back will be a mess and every transfer risky.

I encourage you to forget about the stair lift. Instead, spend that money on an overhead lift for his bed downstairs and modifications to make a downstairs bathroom accessible. Moving downstairs is a big emotional hurdle that nearly everyone resists. But it will have to happen and better it be done before you spend money on equipment he won't be able to use long term. Unless of course, you are filthy rich!

Diane
ALS: From Both Sides

 

[affected]

Hi Heather and welcome.

You may want to get referred to a pulmonologist who understands ALS and have his breathing checked as he may be needing bipap and should start on this earlier than later if his breathing is being affected.

You will find lots of information and support here, keep coming and search through what has been written before and just ask when you need to know something in a hurry.

There are some 'stickies' at the top of the general discussion form that may help you a lot.

 

[gooseberry]

Welcome Heather. Sorry you are here but so glad you found us. This is a very knowledgeable compassionate group. Ask any questions you have. We will help in any way we can. Steph

 

[davbo49]

welcome heather, sorry you had to be here but you did come to the right place.

 

[Barbie]

Hi Heather--well, you have gotten a lot of good advice already and I agree with all of it. this is so overwhelming, and you are obviously trying so hard. we totally get it, and are on your side. Even though it is December already (tomorrow at least) you should think about getting a local pulmno for his breathing. If he is progressing fast, there is no reason to wait until the next appt. for a referral from the neuro.

I am glad you found the forum!

hang in there--Barbie

 

[Graybeard]

I have no appetite, either, and a peg tube has saved me. I lost 66 pounds before going on the tube, and have gained 11 back. It has slowed my decline, I'm sure.

 

[Nuts]

Welcome Heather. I'm s sorry that you have to be here, but glad you found us. Please listen to the wonderful people who are providing such good advice. This is a terrible ride, but there are great people here in the car with you.

 

[Gembead]

Hi Heather,
My hubby had symptoms start in Feb this year , also started in his legs but in his thighs rather than feet, he is now using a walker when we go out but not at home yet. There is just so much to think about, but it sounds like you are being pro active which is great, we are thinking of building a wheel chair friendly house, but we may end up making changes to our current home as our ensuite is tiny.
You will get a lot of support here and so much information.
Hugs to you and your Hubby
Love Gem