Husband diagnosed

Finndoodle

New member
Joined
Jun 1, 2024
Messages
3
Reason
CALS
Diagnosis
05/2024
Country
US
State
IN
City
TIPTON
My husband was diagnosed with bulbar onset only one month ago, although I believe he displayed subtle symptoms around 2 years ago, trouble buttoning shirts which he blamed arthritis. Coughing, allergies according to the family Dr. Then a bit out of breath due to being overweight. In January, symptoms became more obvious: slurring speech, choking frequently and a constant cough. I had my suspicions as I’m a chronic “googler”. Then the fasciculations started days before the neurology appt and by then I was sure I knew what the dreaded diagnosis would be.

The first week I was numb, then panic mode, now just sad. I cry all the time but not in front of him. He has pseudobulbar effect with bouts of laughing and crying, which is difficult as he has always been our “rock”! I have T1 diabetes and had a difficult time with my blood sugar the first week as my stomach was in a constant roll.

Now im in GO mode. We will need our house renovated to accommodate a wheelchair so i have a contractor coming to get an estimate for a ramp and have a downstairs bathroom added. I am a planner so this uncertainty is especially difficult. I’m hoping being “here” will help and give me some direction and make me feel less alone….
 
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Contact Alisa Brownlee at ALS concerning renovations. She is a great resource.

Alisa Brownlee, ATP, CLIPP, CAPS, WSP

Assistive Technology and Home Modifications Specialist

The ALS Association
| 1300 Wilson Blvd., Suite 600 | Arlington, VA 22209 |
Office: 215-631-1877 Cell/Text: 215-485-3441

Email: [email protected]
 
Very sorry that you find yourself here. Ask his doc about Nuedexta, which is a prescription drug that specifically addresses the inappropriate laughing/crying.

Sounds like he will need to consider BiPAP, a feeding tube, and text-to-speech apps in the near future. These can be raised with your clinic at the next visit, if they are not on point.

Because his onset is bulbar and progression overall sounds relatively slow, those are probably at least equal priority to the wheelchair considerations on your list.

I know it will seem secondary, but be sure to keep tabs on your glucose -- he needs your best physical self, you are now a "co-rock," and loss of control can cause long-term damage, as you know.
 
He is currently taking Neudexta and definitely has fewer episodes. I’m such a “planner” so this disease is so frightening! I’m uncomfortable with the not knowing. I can see progression week by week. The choking and coughing is especially difficult to see. His hands have become very weak and wrist on his right side. He has some cognitive decline (which was a bit noticeable for about 2 years) but now he forgets common words more often. The cost of all this medicine is insane! We have always been a one income family with my husband the breadwinner. Everything seems so overwhelming. They give you this devastating diagnosis and not too much direction on what to do….
 
If he is coughing and choking, he certainly should be on BiPAP. Has he had pulmonary function testing? That is used in the justification for reimbursement of a portable machine.

Bear in mind that forgetfulness and wordfinding can relate to breathing problems during sleep, which BiPAP addresses. Lack of oxygen and/or too much CO2 can keep the brain from doing some of the things it knows how.

Re drug costs, has he filed for SSDI and thus Medicare? He certainly sounds like he has enough work credits and an ALS dx is an automatic qualifier in that case.

Also, many ALS clinics have social workers that can advise on any other local, State, or federal benefits that he's entitled to. There is an online wizard at medicare.gov where you can enter information to get some of that, along with your state's SHIP office.

There's still plenty to plan -- but there will be plenty of wild cards as well. You can't control everything about ALS, but you can control a lot.
 
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He is currently on short term disability. If he applies for Medicare, he loses his life medical benefits with the company he works for, and I would lose my survivor life benefits as well. As I have been a T1 diabetic all my life, this is a big a concern for us. He will formally retire in November then we will have to weigh some options. He had a Pulmonary test last Friday and are now waiting on results from the Dr. He will be referred to a Pulmonologist and I’m sure a bipap. I’ve learned to take every day one step at a time. Everything seems overwhelming when thinking too far into the future….
 
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