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susane

New member
Joined
Apr 24, 2011
Messages
2
Reason
Loved one DX
Diagnosis
03/2011
Country
US
State
ks
City
Lyons
I recently lost my mom to ASL. I am searching for information because I didn't have enough time before she passed to learn. I feel the need to understand this disease.

Here is our story. My mom felt an overwhelming weakness the first of November. She had been cleaning out her garage, rearranging plastic totes. Mom was 80 years young. She was always the caregiver. She was copiloting a friend through cancer treatment. She drove to her younger sister who has Parkinsons weekly to help her in whatever way she could. She was always there for us and available to whomever needed her. Mom had been having trouble with her right thumb for some time, sure it was arthritus. He doctor made her an appointment with a neurologist to check her out for carpoltunnel. That appointment was scheduled for March 7, 2011. She didn't slow down until Christmas and then she admitted that she was tired. She came down with bronchitus and just couldn't shake it. She started using a cane a couple of weeks before Christmas to steady herself. When I look back at the Christmas pictures I see her slack jaw and that foretells the future.

By the time January came around she stopped going anywhere and started using a walker around the house because it was easier to use than the cane. Still doctoring for the cronic brochitus, she was waiting for that to heal so she could get her energy back. Her back had gotten really weak so the doctor had her go to some physical therapy. She gave up cooking because she just couldn't stand long enough to do it. By mid January we hired someone to help with the housework because Mom just didn't have the energy, she was just so weak. By the end of January Mom was finally whipping the bronchitus so now we wait for the energy to come back. Well it didn't, it got worse.

February didn't bring any good news. Mom's hoarse voice didn't improve. Mom was still struggling with coughing fits, eating seemed to bring them on. Mom was struggling to breathe. Mom's only health issues prior to the bronchitus were seasonal allergies and late onset asthma (60 years of 2nd hand smoke). We made a trip to the emergency room because she couldn't get her breathe. She got a steriod shot and another breathing machine medicine. Her lungs were clear but she just couldn't shake the cough and shortness of breath. Mom still didn't go anywhere except doctors. Walking with the walker to the bathroom was exhausting her. She was letting us wait on her. Jokingly called me her slave.

March came and now the muscles in her arms and legs were vibrating. We could see them. When we went to the neurologist she didn't even argue when I said we needed to use the wheelchair. That is the day we first heard ALS. He was very straight with us, needed to run some tests to rule out other possiblities but he didn't give us much hope. We went out to make the next appointment for nerve testing and the first available appointment was April 7. Mom's response to that was that she wouldn't be alive then. We made the appointment, thinking that we would try to move it up. Next was an appointment with her regular doctor in mid March. We told him was the neurologist had told us. He had read the reports and talked to us frankly. He was also shocked by the difference he saw in mom from the appointment in late February.
The doctor interceded and had the nerve tests moved up to March 30. He told us that we needed to get our business in order.

Now we were on the fast track. Mom had told us she would be going to a care home when it was time. My brother from out of state had come home and was staying for 10 more days. This allowed mom to stay home until April 1. That last week at home saw many more changes. We started cutting up her food real small and using gravy on everything so she could eat it without choking. She could stand and transfer herself to the seat on her walker but could no longer make the walk to the bathroom. Her voice was weaker than ever.

April 1 Mom moved into a care home. She brought her lift chair because she couldn't breathe laying in bed. We first met with Hospice that day also. Mom died at 3:10 on April 9, 2011. Each day Mom lost ground. I was struggling to understand her whisper the night before she passed. She ate a few bites that day and drank very little. Her will was to leave us and we had discussed that at great length and we understood that this was what she wanted. The alternative scared us so much more that letting her go.

What I'm struggling to understand is why this moved so quickly. If mom had ALS for 3-5 years she was remarkably healthy though most of it. Does it happen like this sometimes?
 
I am so sorry about your mother's death. It seems remarkably fast. Maybe due to her age? You are right that would be very healthy to have had it for years prior. Again, I am so sorry, but agree with your mother that the alternative was truly more frightening than letting go.
 
It is my belief that a lot of older patients actually have undiagnosed ALS. Just putting it to old age, which is actually how a lot of our PALS symptoms look like. My husband has the body appearance and movements of a 90 yr old man. I had an adopted Uncle who had very similar symptoms as my husbands the last few yrs of his life, and kind of wonder if maybe he had ALS. He died at the age of 92.
 
Oh boy.. I can sure relate to your confusion. My closest pals was diagnosed with the disease about 5 years ago I'd say. Definately longer with symptoms. During this time she went through what I call progression phases where her progression would speed up dramatically. Then it would plateau. Just recently she has been going through drastic progression, but no plateau like normal. I wonder if perhaps will to live plays a part in this. Wonder how their psyche affects their progression.

I am sorry for your loss and hope that you can find peace in some of this knowledge you are seeking out. Lots of love.
 
Very sorry for your loss, susane.

This is an incredibly cruel disease and each pALS is different in their symptoms and progression.

We were also told that my husband had this disease for years before d x. He's always been very healthy.

I would think your mother's age might have had something to do with the fast progression. Don't really know.
 
Hi Susane, I'm very sorry to hear of the loss of your mother. My mother was diagnosed on April 20, 1999 (I can never forget that date as I saved her calendar for that year and on that date she wrote "bad news"). She too, for some time battled a nasty cough that wouldn't go away, bronchitis etc. The next time I saw her after her diagnosed, I could tell that she had already declined. It was if she knew she was beat. We spoke of the meds she would be taking (Rilutek) and that it could give her about 6-9 more months. Her only response was a deadpan "whoopee" Her decline was very fast and by the same year on December 13, 2009, she was gone at age 73. By then her voice was gone as well as her strength. We discussed feeding tube but she was adamant against that, breathing tube and anything else that might prolong her agony. She was such an independant woman (a widow at 40 who never dated after my father died in a car accident), worked to raise 3 kids on her own and who did everything she could for us and her grandchildren. So, sounds like our mothers decline maybe had something to do with they just wanted to let go?
 
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