Scared to death for my husband and our family

Status
Not open for further replies.

Mainer

New member
Joined
Jan 25, 2023
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hello! Please forgive me for my lengthy post. I am worried sick about my husband and our family. My husband is 55 and for the past 2-2.5 years he has had bilateral weakness in his hands that has shown mild progression. He has not been able to make a full fist with either hand and grasping things is difficult. He chalked it up to arthritis and ignored it, despite it being very frustrating. I kept telling him that sounded neuromuscular not arthritic.

About 18 months ago my husband started getting clumsy, tripping and falling. He has knee issues and is in need of having both knees replaced so he figured it was due to his bad knees. He thought his knee was giving out. About 9 months ago he fell down the stairs after he tripped on something and sprained his ankle. Not long after that he began experiencing numbness and prickly feeling in 2 toes on his left foot that sometimes radiates up his leg. His leg feels heavy after a long day at work. He chalked that up to his fall. He states he does not feel as though his leg has gotten any weaker in the past year.

My husband sustained an injury at work that led to having his shoulder examined, at which time he told the doctor about his hands and leg. This was not his regular doc so he was advised to contact his PCP for an MRI. His PCP ordered an EMG that came back abnormal showing diffuse abnormal spontaneous activity in the left upper and left lower extremity, and myotonic discharges. For some reason they did not test his right side even though my husband said both right and left hands were equally weak. The EMG doctor was concerned and asked my husband if anyone in his family had a neuromuscular disease like ALS. The doctor dismissed a family history of Parkinson’s. This was the first time either of us even considered it could be ALS. I ignorantly thought ALS normally started with muscle twitches. With it starting in both hands it didn’t seem to fit ALS. After doing more research there doesn’t seem to be any other dx that fits all of his symptoms.

My husband was referred to a neurologist right away. An MRI was also ordered which showed degeneration but nothing impinging the spinal cord. We are still waiting for the doctor’s response but it looks like nothing on the MRI is causing weakness. We have another EMG and blood work next week. We don’t see the neurologist until the end of March however.

From all my research, I am convinced it’s ALS. I don’t know what else it could be. I am a complete wreck. This consumes my every thought. I am overwhelmed with fear of how we will financially get through this. My husband works a physical blue collar job which he will lose once his employer finds out. How will we pay the bills and pay for his care on my smaller salary? We do not have long term care insurance to cover care. We have a modest portfolio and savings. We do not have a revocable trust set up so if Medicaid is needed, the 5 year look back would hurt us if we did it now. Setting up trusts was on my list for this year. I have put it off because I stupidly thought we were healthy enough so it was not urgent.

Our house is a small older 2 story house that is not wheelchair accessible. The full bath is upstairs. The half bath on the first floor is extremely small and will not work once he loses mobility. Our only bedroom option would be converting either our living room or dining room into a bedroom. It isn’t feasible to enlarge the narrow hallway to the downstairs bedroom or half bath. Adding a bedroom and accessible shower on the first floor is possible but would be incredibly expensive.

How will I be able to transfer my nearly 300 pound husband or afford a Hoyer to move him?

How will my young adult children handle this. 2 are still in college and one already struggles with severe anxiety and depression. How do I support them when I’m already overwhelmed? We have no family or real friends here. My husband’s sibling live 1500 miles away.

These are the things I worry about all day and all night. Then I start to feel sorry for myself knowing my life will forever change, which makes me feel guilty and like a terrible person. My husband has the worst of it.

My mind is a revolving door of worry, guilt and anxiety.
 
Without having seen the EMG (feel free to post it, de-identified, and likewise, the one next week), it seems like you're way ahead of yourself. Diffuse abnormal discharges that are purely myotonic would be from the muscle and usually signify a myotonic or pseudomyotonic disorder, not a neuronopathy like ALS. The onset with an inability to make a fist bilaterally would fit within that grouping

And whatever he has, it is progressing very slowly, which would also be more typical of a myotonia, which has several possible causes, from endocrine and metabolic disorders to primary muscular dystrophies. Many people with ALS die within 1-2 years of the first symptoms, and most within five.

It is not unusual that only one side was tested. EMGs do not need to test all the muscle groups.

If it is really ALS, he will be eligible for SSDI and Medicare, so that would help in terms of affording basic care and equipment. You would also be able to choose a supplement and Part D plan, or [possibly, depending on the options in your state] a Medicare Advantage plan. Very few of us had/have LTC insurance, so you're in the majority in that regard.

If he has another condition that prevents him from working, he would probably be eligible for any company disability benefit and ultimately SSDI just as he would be for ALS.

My husband was 250# at his lightest, but that is what an electric hospital bed and patient lift [ALSA chapters often have loaners, but they are not as pricey as you might think] are for.

Anyway, I shouldn't go further into how you could deal, because he doesn't have a diagnosis yet. Let us know what happens next week, and we'll support you however we can.

Best,
Laurie
 
Thank you so much for your response. It has eased my mind a bit. I am not one to normally jump to worst case scenarios. ALS was not even on the radar until the doctor administering the EMG asked my husband if he had a family history of it. I know the majority don’t. The EMG doctor was very concerned about the test results and told my husband to see a neurologist. My husband quickly made an appointment. Oddly, his PCPs office called and wanted to know who referred him to Neuro because the PCP said his EMG was normal. I think the PCP needs to go back to school as the summary stated by the EMG doctor said there were many abnormalities and the recommendation was for neurology consult and an MRI. The report showed all the abnormalities in red. Might be time to find a new PCP.
 
If you can post the EMG we can respond better. Hopefully this is one of many more common things.
 
Status
Not open for further replies.
Back
Top