Status
Not open for further replies.

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
My husband has been diagnosed with ALS - this past month. He has both bulbar and limb onset. The bulbar symptoms are the worst...The panic in his eyes when he is choking is just awful. We are trying to do the best we can in coping with the Wicked Step Sister that has moved in and is trying to take over. She is an absolute terror.

He had a heart attack and stroke about 2 years ago and it was the widow maker. But he survived. They installed a stent and he was getting along well actually - except afterward - he had a progressive pain in his arm. Then it just got worse. The muscles started to decline - and he had numbness. He would shake his hand and arm thinking that it was a blood flow issue. This went on for a year - Cardio told him its not his heart - may be due to the stroke. Finally, after a year - he thought he might have Parkinson's - so he went in for testing. The tests were negative.

The Parkinsons DR. referred him to the Director of Neuro at USF (University of S Florida). He went in - she checked him out - and started to test. You name it - he was tested. EMG - Nerve conduction - HIV, Syphilis, Lyme, MRI - brain - MRI whole body. The entire time he was being tested - she said nothing about the diagnosis. She just wouldn't tell him anything until the test results were all in. This went on for about 3 months. He was actually irritated - (as you can imagine) and then she broke the news to him. It was ALS. In a month since the Wicked Step Sister Moved in - it has progressed to his legs and feet - but the bulbar symptoms are most disturbing. He complains of a "drawing up feeling" in his muscles at night. He has to try and stretch out every morning.

The other morning the muscles in the chest and surrounding the heart seemed to be affected. Can anyone tell me more about this symptom and how to help when his breathing becomes affected? What kinds of tests should I be asking for?

I should mention about the FTD too. Its an added bonus of the disease... Nice touch Wicked Step Sister - lets not just play with his body - lets add the mind too. Lets take him from being perfectly sane and rational to out of control rage - and inappropriate behavior at times. Stood up in a restaurant (out of the blue) and declared "at the top of his lungs" that a woman in the restaurant was wearing pants that were too tight for her. This went on for about 10 minutes - until I could usher him outside and apologize. In front of our kids (teenagers) and their friends. Traumatized? Oh you bet.

We have just started this journey. When I see some posts on this forum - of people who are insistent that they have ALS - when they don't - I am mortified. After living with the Wicked Step Sister - I am convinced that she is the most horrific disease imaginable. Why on God's green earth - would you ever want to be a part of this? I just don't get it. My husband was 50 years old, a triathlete and a vegetarian. He took care of himself. Doesn't drink - doesn't smoke.

I pray for each of you who have had the unfortunate luck of meeting the Wicked Step Sister. If I could get my hands around her neck - I would choke her myself! You can be certain of that.
 

tammyg

Distinguished member
Joined
Jun 10, 2011
Messages
374
Country
US
State
md
City
baltimore
If you can't meet in the middle and find some common ground. You are hurting, she is hurting, the kids are hurting. There could be alot of hurting lashing out that is going to get worse as the disease progresses, I think it is time to ask her to live else where, rent a an apartment or house down the street, or down in the next town. You and youe family do not need the extra stress at this time. She could even be wearing down you husband mentally and making things harder on him and your kids.
I am so sorry you are going through this with her. Does your husband have all the machines to help him, breath, cough assist and a suction machine. They are a must.
 

st123

Distinguished member
Joined
Feb 2, 2012
Messages
298
Reason
Lost a loved one
Country
US
State
Michigan
City
Mid
So sorry you're going through this 'themommy'.

Tammy, I believe that 'themommy' is just using the name 'wicked step sister' as a moniker for ALS. Maybe I've misunderstood, though?

Tammy has good questions for you, 'themommy'. If his diaphragm muscles are now affected, a bipap machine is critical. If he's aspirating due to the bublar effects, a cough assist is necessary. Hopefully, his neuro referred you to an ALS clinic and the ALS Association in your area. If not, it's time to find them.

Again, I'm so very sorry that you and your family are going through this.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
So sorry that you guys have to deal with FTD in addition to ALS. There have been some excellent discussions about FTD and links to several articles on previous threads. Hope you find a good Clinic.
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
I thought the same as you Sharlene. Wicked step sister=ALS. to bad she cant just kick her out.
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
The wicked step sister is ALS. And she is brutal. Sorry for the confusion factor.. And not only is it themommy - its also Amy. :)
If I could kill her - believe me - I would for everyone! <3 <3 <3

We rushed to the hospital 3 days ago because we thought he was having another heart attack. When really it was the diaphragm misbehaving. Extreme shortness of breath. Trying to get things under control - solution? Morphine then puking. Which is 'OH SO MUCH FUN' - FOR SOMEONE WITH BULBAR ONSET....Nice touch wicked step sister...as if you aren't nasty enough the way it is....

I don't know - I have never seen a disease take over in such a ravishing way before. And oh my goodness - so quickly.....We do have an ALS clinic in Tampa and one in St. Petersburg. We have clinic on May 11th.
 

LizT

Very helpful member
Joined
Aug 8, 2010
Messages
1,517
Reason
Lost a loved one
Country
US
State
WI
City
Beaver Dam
Sounds like he needs a Bipap, and fast.
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
Shoot! This has come on sooo fast that we weren't prepared for the avalanche of issues...He went from having a numb arm to choking, breathing problems. In a month.
Liz - please tell me. And be honest - as I know you will. (I have read the THINGS I HATE - and I agree with you!)
Given the activity in the diaphragm - what should I expect? How on earth does it happen so quickly?
 

Okie2

Distinguished member
Joined
Dec 21, 2010
Messages
258
Reason
PALS
Diagnosis
04/2010
Country
US
State
Oklahoma
City
Bartlesville
And a cough assist!
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
What does a cough assist do?
 

glupavomomiche

Distinguished member
Joined
Sep 25, 2011
Messages
272
Reason
PALS
Diagnosis
09/2011
Country
US
State
Texas
City
Podunk
Hi themommy,

I'm so sorry to hear of your husband's diagnosis... and sorry to hear what a hard time y'all are having with the old wicked step sister/beast/witch with a b/and grandma flo, all rolled into one! ALS is indeed the worst disease ever. I know your clinic day is coming up soon, so wanted to try to answer your questions as best I can before you go

There are many things that can help (not always completely, but to some degree) with the muscle cramping/drawing up feeling. I have this problem very bad too and it is always worse in the morning or any time I've been sitting or laying in one position too long. Range of motion exercises and gentle stretching before going to bed go a long way in helping to relieve the problem. It also helps prevent contractures, which can be a huge problem if this problem persists and results in him not moving around enough. Some medications can also provide some relief... I take Baclofen during the day and Zanaflex at night... ask the doctor about these. And definitely tell the PT at clinic about this and she will teach you how to do the needed exercises and stretches and give you some literature about them too.

If he hasn't already had a breathing test, he definitely needs one. The FVC is the main indicator of breathing function, but this numer can still be "good" and there be other problems. Make sure they check the MIP (max inspiratory pressure) and MEP (max expiratory pressure), as these can also be an indicator for breathing problems. If a problem is detected with the FVC or MIP, the doctor can prescribe the BiPAP right away without even having a sleep study... this might expedite getting the equipment he obviously needs.

But most important of all... does he desire a feeding tube? If the bulbar symptoms are that bad, he needs one! If he agrees to have one, you should definitely ask the doctor to arrange for this to be done ASAP.

Again, so sorry to hear things are doing downhill so fast. And hopefully everything I let you know is correct (and if it's not, someone please speak up and correct me!)... I'm still pretty new at this too. I was diagnosed when I was 32, a never-smoker or -drinker, and always physically active with dancing... this disease seems to pick the least likely and least deserving candidates!

Take care and let us know how the clinic visit goes!
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
the cough assist "delivers a large volume of air into the lungs (via mask) and then quickly reverses the air flow to pull out secretions, just as a cough would." I just got mine and it really is helping.

Contact the MDA in your area and get him registered. They will send a form for the doc to sign and return. They will mail out a couple of very helpful booklets which will explain the various pieces of equipment that are often used in ALS. There's a great Caregiver's Guide. It even illustrates common ROM exercises. Many chapters also maintain a lending closet for equipment.
 

st123

Distinguished member
Joined
Feb 2, 2012
Messages
298
Reason
Lost a loved one
Country
US
State
Michigan
City
Mid
Hi Amy :)

So sorry about the FTD as well. If you look, you'll see a separate forum here dedicated to FTD. There are many useful threads there. Please give yourself credit for all you've done and are doing. Add to your list of wicked stepsister hateful things the frustration you'll experience when you know things like 'range of motion' exercises and cough assist sessions will make him feel better and he won't cooperate. You may find some creative suggestions as well as the support to cope in the FTD forum. Remember you can only do what you can do and take care of yourself!
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
He takes Gabapentin and Flexeril to try and mitigate some of these symptoms. We haven't had really any kind of help. Just the diagnosis then sent on our way - waiting on the 3 month interval with the Neuro. Thought everything would be ok - just a numb arm - and some slurred speech?! So we didn't make any other arrangements to see anyone. We didn't really know what to do. Its very confusing in the beginning - ya know? You are still in shock...lets face it - its shocking....

Remember this has all happened in a month's time. (Last month we were cruising to Cozumel! Without a care in the world!) THEN WHAMMO!

He is choking all the time, can't swallow.Within 2 weeks he started complaining about having breathing problems at night. Then it was what we thought was a heart attack - but it was just the diaphragm misbehaving. He says he can feel it starting there. That the ALS has begun grabbing that area HARD. Apparently it starts gripping him (twinges and flutters) and then it becomes extremely PAINFUL. It is now moved to his feet and ankles and the other arm. I don't know - I have never seen a disease come on so strong and so fast before in my life.

This is our first trip to clinic since the diagnosis. So tell me what should I do I do? Should he have Physical therapy? (Will that do anything to make him feel better?) Is there anything else I should ask the clinic for? Suggest? I think he would be well served with a the Bipap vent. because when he went on O2 in the hospital - he seemed to feel better...A little more energetic. He is extremely fatigued.
I thought we would have more time.....
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
The diagnosis is overwhelming. You just don't know where and what to start asking at first. I was lucky to get into a Clinical Trial at our Clinic, so didn't have a long wait between visits.

You will see each of the disciplines at Clinic. They will do an eval and order any equipment or F/up that he needs. Get contact numbers and e-mail addresses for each one and get a point of contact for the clinic so that you can get questions answered between Clinic visits.

Fatigue is a chronic complaint in ALS. The bipap may help with this. He may breathe easier with the head of the bed elevated. See about getting a hospital bed.

Some drink tonic water to help with the muscle cramping.

The dietitian will evaluate swallowing and give him some tips and techniques that may help temporarily. Thick liquids are better tolerated than thin ones. Get your blender out. Ask about a PEG.

The doc will measure strength in his extremities. Get AFO's as soon as any weakness starts in his legs and consider getting a "lift" chair.

Write down all your questions, prioitize them, and take the list with you to clinic. Some CALS make a notebook with sections for each discipline. Have a place to put handouts.

It's can be a long day. Take some bottled water and some snacks. We're fortunate at our clinic that one of the departments or vendors provide lunch in the conference room.
 
Status
Not open for further replies.
Top