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Alex123

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Joined
May 31, 2014
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128
Reason
PALS
Diagnosis
05/2014
Country
US
State
California
City
Los Angeles
At about the same time I was in my home country taking care of my mom, and while I was starting to have symptoms of ALS, I noticed that our female cat was loosing strength in her legs. As she continued to deteriorate, she was loosing weight, the muscles around her spine were shrinking and the vertebrae were more easily felt when touching her. She also started to loose her “voice” and eventually had trouble chewing the regular cat food. So I started buying her cat food in paste form and she could chew that one much more easily. Very often I noticed that her breathing involved quick (not smooth) motions of her rib cage. This didn't happen all the time but when it did it was easy to notice. Before getting sick and in the early stages of her disease she was spending most of the time in the house's porch. But when she got weaker and the weather outside was a little cold, I let her spend her nights in the kitchen. It looks like her cognitive function was OK, because some times early in the morning she would come next to my bed and call me so that I would let her go out to “go to the bathroom”. Eventually I brought the litter box inside the kitchen. She was sleeping on a cushion on the floor, which made her more comfortable. One morning, when I went to the kitchen, I found that she was not moving. She was in the same curled up position she usually sleeps. Soon I noticed she was dead. It appears that she just stopped breathing.
I have heard (now that I have done a lot more reading about the disease) that there are other animals besides humans that have diseases similar to the human ALS. I also read about cats having a neuromuscular disease that resembles ALS. So it is not too strange that this cat got the disease. But the strange thing is that her and I got similar diseases while living in the same house and at about the same time. As a possible cause for this coincidence, of course genetics is excluded but two factors that remain a possibility would be exposure to some toxic substance or to some insects that could have transmitted a pathogen. It could also be that there was contagion in either direction, but most likely form the cat to me, as I got some scratches from her and was cleaning her litter box.
On a second thought, if some pathogen transmitted by insects was what caused the disease, then there would be many more people exposed. At one time I used pesticides to eliminate fleas, and I think both the cat and I were exposed to this, as well as some herbicides that I used in the garden. But if I was exposed to these substances, the exposure was minimal (no effects noted at the time) and not too often.

Now, while I think that having a cat and a human living in the same house develop an ALS-like disease is unusual, I have never had an opportunity to comment this to my doctors, and even if I did, they would not be interested in hearing about it. So I can imagine that if there are other cases like this happening, they must be under-reported. I don't remember seeing any question about a situation like this in the National ALS Registry.

Have you heard of or experienced something similar?
Do you think this was just coincidence or there could be a connection between my disease and the cat's?
 
Coincidences happen certainly. There are people on this forum who have had ALS twice in their lives in unrelated family members ( spouse and sibling for example)
There are cases of marital ALS ( unrelated by blood- not cousins)
My family has genetic ALS. The man who purchased my grandparents' home has ALS.
etc.
We can't know the answers why ( other than FALS) unfortunately
 
Yes, I was considering the possibility of it being just a coincidence. But anything that is very unlikely makes you wonder if it just a coincidence. Of course, there are many ways that two people that have ALS can be connected accidentally (like what you mentioned). I heard before of one case of a couple where they both got ALS. In that case, even it can be just a coincidence, if ALS is in part triggered by environmental factors, by living together, they were both exposed to some of the same possible triggers. It could be something in the house, or in the food, or perhaps (very unlikely) it could have been transmitted from one person to the other. I know that there are no viruses that have been found in people with ALS (except for endogenous retroviral activity) but transmission could be made trough something similar to a prion. Some people have postulated and even shown that some of the misfolded proteins spread like prions within the nervous system. I understand that if ALS was transmissible, there would be more people getting it form someone else, but it could be that while it is transmissible, there is something that makes it very unlikely for that to happen.
Now, I don't know what the lifetime risk of developing ALS is, but using the incidence rate of 2 in 100,000, if we multiply that by an average life of 70 years, we get 1.4/1,000 and squaring that to get the probability for two people we get a about 2/1,000,000 which is not that small when you consider the population size.
So, yes it could be coincidence. But as we are still looking for a cause, when something unlikely happens I think it deserves to be investigated.
I don't even have a diagnosis for the cat, as she was very scared of people she didn't know and I couldn't take her to the veterinarian. When she died I wanted to have an autopsy done but I didn't find a good place to have that done. But when you consider all the symptoms together, it did look vary similar to ALS.
 
When I read your story about the cat, I didn't consider it to be "cat ALS" but I was sad for the cat, anyway. Very touching story, thanks.
 
I've always thought it odd that four faculty members out of just over 300 had ALS at my college. Two were math teachers and the other two accounting teachers (including me.) I actually taught in the same building as the math teacher when I started and worked closely with the other accounting teacher, including publishing a book with her.
 
4 out of 300 is really strange. I don't remember what the incidence rate was in Italian soccer players which were considered to be a "cluster". Well, your college has been a "mini cluster"
 
That's where these statistics have to be collected and examined by researchers.

If you understand sample and whole populations then you can read statistical data more accurately.

Here is an example.

I live in a rural area in Australia.
We have around 1900 PALS at any given time. 2 diagnosed each day and 2 pass each day, so PALS population holding steady at this point.

Some years ago, in one small town near where I live, with a population of around 5000, there were several PALS. Over a period of a few years there were several more diagnosed and passing.
It was just beginning to be suspected as a cluster and all kinds of things were worrying people.
The last PALS passed, and now for quite a few years (I think maybe around 10 years now) there have been zero PALS in this town.

So we have to be careful as coincidences can and do happen. It's a bit like tracking the rolling of a dice 10 times and claiming that 3 comes up more often than any other number. Roll them 10,000 times and actually it doesn't.

There could well be environmental factors for ALS, but is the impact something that we were exposed to in the first month of life, exposed to just once, exposed to repeatedly for many years or something else?

That's where it becomes so important to have big databases held by researchers with huge volumes of PALS giving lots and lots of information. Then when that dice has been rolled 10,000 times some patterns or common ground may just show up.

Well that rambling is just my take on things, it's all interesting though.

I have heard of dogs with ALS, though they don't call it ALS or DALS, it is the same disease and progression, so I can't see why cats can't also be afflicted.
 
The published Lifetime Risk of getting an MND is approx 1 in 400 - it can vary from country to country.

Incidence of MND is so low because of the short life expectancy.:(
 
The published Lifetime Risk of getting an MND is approx 1 in 400 - it can vary from country to country.
Incidence of MND is so low because of the short life expectancy.:(

So the number I was using for lifetime risk was too low.
When in your second sentence you say that incidence is low, I think you really meant prevalence right?
 
I agree Tillie with everything you say. But I think that presently the collection of data form PALS is deficient. I think the ALS National Registry is not collecting enough information and probably hospitals and other institutions are not sharing the data. They may give as an excuse that they would be violating the patient's privacy, but I think most PALS would be happy to give them permission to provide the data to a registry or share it with other institutions. I know that a lot is being done to know more about the disease and find a cure, but I think more could be done without necessarily spending more money.
 
My career has required me to use statistics and probability frequently. One thing that I have found in populations not studied extensively, repeated "coincidences" frequently turn into data that is statistically significant. If it isn't studied, it becomes anecdotal.

I've been exposed to some risk factors (at least I consider them risk factors), being raised in a house with four chain smokers (I can't even be around smokers because just the smell of the smoke on them chokes me up), living on a highly pesticided golf course for 25 years, having a couple of head traumas (one classified as a TBI), being muscular and athletic much of my life with lots of sports, including contact sports when I was young to name a few. Our college had some buildings that were shut down for sick building syndrome. I was not located in these buildings but the building I was in was questionable and one other teacher was dx with Lyme, several with cancer, one with ALS all within a few years were all located in my building. After the one with "Lyme" was relocated, his symptoms went away. The others died.

I also think, in the past, ALS was underdiagnosed. Even in my family it was recently brought to my attention that my paternal grandfather died of post-polio syndrome (this was over 100 years ago) but they really didn't know what it was. He died at 42. His only son (my mom's brother) had been dx with MS long before MRIs. He progressed and committed suicide when he was in his 40s. It makes me wonder if either of them had what was reported.
 
Tim, have you had genetic testing done?. From what you say there is a possibility that it is familial ALS. But of course all those other factors that you mention could have played a role.
 
I just found out about my grandfather and my uncle and will bring it to my ALS doctor's attention when I see him in two weeks. Believe me, I'm willing to be a test subject for anything they want to try.
 
My parents have had a parakeet since the late 90s. After my father's ALS diagnosis, the parakeet's legs became weaker. He would fluff his wings constantly to stay upright. Now his wings no longer work, but he has a special place he can rest and eat inside his little cage. I remarked to my mom that it was almost as had "parakeet ALS". I also wondered if this had ever happened to an owner and their pet, so it was interesting to run across this. I'm sure its just a coincidence, especially considering the remarkable age of the parakeet.
 
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