Decoding ALS

[emi82]

December 16, 2013 - a date engraved in my mind because it was the day my mom came back with the diagnosis of Amytrophic Lateral Sclerosis. When that term came out of my aunt’s mouth I froze in disbelief - In my college class it was discussed so briefly but the one thing I remembered was that there was no cure. “I must be thinking of the wrong disease - my mom didn’t fit at all the profile of someone with ALS - just a few months back her neurologist thought it was a pinched nerve - what?’

My mom’s noticeable symptoms started with her left hand thumb and index finger. They started to become so weak that she couldn’t tie her hair up or button her clothes. She still continued to go to the office, do grocery shopping, and cook and still not complaining. Now I think of her using the right hand to cut up the meat while the left hand offered very little support. She continued to do as much as she was doing before though slower until about a month before the diagnosis. I honestly can’t stop thinking of my mom just in the earlier part of 2013 lugging in 4 gallons of milk, two in each hand. I just can’t stop thinking…

I am usually in these thoughts as I peruse through the ALS forum. No, I have never joined in the discussions before but the people on here have been a source of comfort, knowledge, and inspiration.I just wanted to read and read and read. It also allowed me to see that at the core of ALS - were the affected people, discussing and offering ideas, prayers, and support. Everyone had and has a story. I kept reading trying to find similarities and differences between my mom and others. There are so many clinical trials and research aiming at the same thing - is there a core similarity?

I started jotting down some questions - hoping to find the answers. Now I was hoping to just share these questions with you. I don’t know if this will help at all but I was thinking that if we can graph our personal stories together, we will be able to see immediate results rather than waiting for researchers to come back with the results much later. I hope that you can take a moment to look at and answer this short anonymous questionnaire. I don’t know if this will help in anyway at all but I wanted us - the people affected - to be able to openly see results to questions we have perhaps answered over and over again. Please let me know if you think these are not the important questions or if there are more to add - something that might help us or lead our thoughts to a common link that we share.

 

[Santa joe]

Emi82 so sorry you had to join us but glad you did. As you have already stated, this site is a place of comfort and support. There are so many caring and wonderful people out here to walk with you on this journey.

I had thought the same thing. If somehow,someway we could find a common bond that causes ALS. My stepfather passed away 21 years ago from ALS and now my husband was diagnosed in 2012. They had 3 things in common.

1. Exposure to chemicals
2. Concussions
3. Exercise after years of not exercising.

Debbie

 

[emi82]

Thank you so much for the reply Debbie. I had provided a link to the questions I created but I am not sure if I am not suppose to include it? I was just creating a graph for all of us to view.

Decoding ALS

 

[FSHolbrook]

I am sorry tht you had to join this group, my first indications were the same as your Mom's. I think that I do not fit Debbie's 3 points. I exercised regularly summer and winter. I am thinking that there are very few commonalities among people with ALS. The symptoms may be similar but, the causes look to be many and varied. I am hoping that the researchers can find a cure or at least a stopgap.

Rick

 

[emi82]

Is it possible to include the questions this way?

decodingals . com

 

[emi82]

Thank you so much for your replies Debbie and Rick - I understand that there are so many differences, but I just was hoping there was some way to actually see a good graph. I am thankful that there is the ALS registry now but it seems like it is for researchers to look at as we submit our answers and life history.

 

[Janie H]

I started exercising after years of being sick, I was over doing it , a hour and a half on the treadmill, five miles a day, a few months later I started having bulbar symptoms. I was trying to strenthen my lungs, now they are weaker than they have ever been.

 

[emi82]

Hi Janie, My mom was also exercising pretty hard in the last few years. The doctor at my mom's ALS clinic was saying how many patients are very active people. i dont know if there is any association at all but it would be interesting to find if there is a correlation at all.

 

[Ronnie& sissy]

Very nice survey, thanks for putting that out there. Hopefully people will take time to do it, very interesting to see the info payed out like that. Best of luck.

 

[Nikki J]

I am so sorry about your mom.
Contributing/ precipitating factors are so interesting. If only we knew!
2 of the studies I have been in for FALS looked at environmental/ lifestyle issues very closely. There were pages and pages of questions about where you lived and worked what you ate how active you were. I wonder about this because my family is FALS and both my sister and I are gene positive. She is younger and has ALS already. Is it lifestyle?
If you are interested ALS worldwide ( a controversial organization) has a survey on their we bsite

 

[emi82]

Thank you so much for your words of encouragement and taking time to look at the questions. I will have to take a look at the website you mentioned.

 

[emi82]

I didn't realize that there were so many PALS who felt that exposure to certain types of chemicals in their past could possibly have had an effect. I am holding onto hope that we will know more...