I have some questions about ALS

[Eddie]

I am a highschool freshman. I have a school assignment to write a paper about ALS. I have been reading about ALS and have some questions I would like to ask someone about what it is like to experience ALS. I would appreciate it so much if someone or several people could help me. thanks

[Al]

Hi Eddie. Check out Leo Greene's story. He is in L.A. and has ALS. Watch his video and read his story. If you're near him you could contact him and I'm sure he would help you out. AL.
http://www.dailybulletin.com/leosstory

[Eddie]

Thanks Al,
I don't live near LA but I did email Mr. Greene this morning. I hope to hear from him. If I don't I may post some of my questions on this forum. I'm not sure what would be the best way to do this; if someone has some suggestions I'd appreciate it. If anyone wants to email me directly my address is ww2lancaster@gmail.com
Thanks again Al for you interest and help!

Eddie

[CindyM]

Hi Eddie. Interesting topic you have for your assignment. Did you choose it yourself or is it a class assignment? ALS is relatively a rare disease, so I'm always intrigued when someone shows interest...

If you have time you might read the book "Rowing Without Oars." It is very short and the author covers a lot about what happens. Good luck! Cindy

[Pearl]

Go ahead and ask away - some might answer for you.

[Eddie]

Hi Eddie. Interesting topic you have for your assignment. Did you choose it yourself or is it a class assignment? ALS is relatively a rare disease, so I'm always intrigued when someone shows interest...

If you have time you might read the book "Rowing Without Oars." It is very short and the author covers a lot about what happens. Good luck! Cindy
Hi Cindy
Actually the whole school had to choose a different medical condition to research and interview someone on. So since a lady that helped out at the school I used to go to was diagnosed with ALS, I was interested in ALS and so I chose it for my topic.
Thanks for suggesting the book "Rowing Without Oars." I am going to look for it. Eddie

[thomkat]

Another great book is On Any Given Day by Joe Martin. He wrote the book himself and it chronicles his experiences through the progression of his disease. Awesome man and quick read.

I am the caregiver for my husband with ALS and we have two kids (daughter is high school freshman and son in 7th grade). I would be happy to answer your questions to help with your research.

Kathy

[CindyM]

Well, Eddie, you picked a good topic. I'm sure you'll get a wealth of information on this site. The lady at your school that had ALS must have been a very nice person to make such an impression on her students! Best luck and hope you get an excellent grade! Cindy

[Jamiet]

So, Eddie, lets get your question link started.

What are your questions.. Whato points or areas are you looking to cover?

Let us know and we'll do teh best we can.

thx,

jamie

[Eddie]

These are the questions I have. You don’t have to answer any you don’t feel like answering. Thanks so much for your help.
Eddie

What were your first thoughts when you were diagnosed?


How many years have you had the disease?

What was the first symptom that led to you being diagnosed?

Did you notice something was wrong or was it someone else who first noticed something was wrong?

What is the hardest thing about having ALS?

Have there been any positive things come from you having the disease?

Is there a certain time of day that you feel better or worse?

Has ALS made it hard for you to do some things? Any examples?

Has anyone else in your family ever had ALS that you know of?

Had you ever heard of ALS before you were diagnosed?

How has ALS affected your work?

Have you had to give up any hobbies?

How long after you were diagnosed was it before your lifestyle was inhibited?

What was your family’s reaction when they found you had ALS?

Do you think that people had any problems accepting your disease?

What is one thing you think all people should know about ALS?

Is there something that makes the symptoms flare up in particular?

Are you a member of a support group? If so do you find that a help?


Are you on any treatment for ALS other than treating the symptoms? If so do you think it helps?

What do you think is a common misconception about people with ALS?
.

Are you still able to walk without assistance?

Did it take Doctors take a while to diagnose? Was there any miss diagnosis like lime disease.

[Poco]

I'll try to answer your questions in order for my husband.
Denial when first diagnosed five months ago and shock. First systom was neck hanging down and noticed by my wife then unable to raise my arms over my head or to lift weights which I regularly did. Hardest thing about ALS is knowing what is coming and not being able to stop it. No positives for me except I can say goodbye to my family instead of a quick unexpected death. Feel better in evening. Paralyzed in both arms so I can't feed myself or dress or shower without help. Can't blow my nose, answer phone ets, just a feeling of helplessness. Grandfather had ALS. Can't work and going on disability and gave up all hobbies. This all happened in 5 month period. Family in shock, sad but very supportive. They are just starting to read about it now.. Having problem accepting the disease and I get worse because I have no hope for a better tomorrow, only the inevitible paralysis which was always my biggest fear in life. There is not enough awareness. I only knew of it because of Lou Gehrig and then vaguely. I didn't know it could strike anyone at anytime and now that I have it almost without exception everyone I know knows someone who has had it. Example-friend's sister died of it, friend's cousin died of it, cleaning lady father-in-law died of it, associate's mother died of it and these are people I have known over 10 years and it was never brought up until I was diagnosed and this is just my inner circle of people, plus my Grandfather which I never knew about. I get very fatigued and that seems to compound the problems. No support group in our area yet but one is coming. Don't know if treatments are helping because this is moving so quickly. My legs are ok for now. It took 3 months to diagnose with no misdiagnosis. Good luck on your paper,
Phyl

[MaryW]

This is my first post so forgive me if I jumped in where I shouldn't be. Please point me to where I should be. I have bulbar onset ALS. I am still walking around but cannot talk. I just received approval for social security disability and medicare. I have an individual plan with Kaiser Permanente. What insurance companies have you all had good experience with. I am totally lost about what I should do.

[quadbliss]

Hi Mary,

Welcome to the group. You are in the right place. You will find many people here who are ready to answer your questions and provide support. I have had Kaiser all through my disease (8 years). This, together with my local MDA ALS clinic, has worked out very well for me. I am now on Medicare and Medicaid, but I was able to sign this over to Kaiser and keep all my doctors. Just as with any HMO, you have to take responsibility for your own care. Stay informed and don't accept sub-standard treatment.

Mike

[Eddie]

I just wanted to thank you all for all your help by answering my questions and giving me suggestions. All the answers you gave will come together nicely in my report. I now have a little better understanding of what it would be like to have ALS without experiencing it first hand.
Thanks again so much!!
Eddie
:-D

[zac111]

hey mary im not sure im still in the middle of dx but thinkning i may have bublar onset i wasd just wondering what your first symtoms were?

[BWk]

Eddie, It was devastating for me to have to phone my 82 yr. old mother and tell her what they[doctors] thought it was, she said she did not sleep well for two weeks, but I had to tell her and somehow I new from the very start, dx. was a non event for me. First symptom I had was trembling in the morn. before getting out of bed. Nothing good has come out of this for me and it's been terrible for my siblings and mother and grown kids. Never heard of als before I read about it in my local library in some medical reference books they had. After two yrs. of it I am still mobile and can drive, etc. but can't work. Barry

[patricia1]

How is your speech and what is affected your story sounds like my I have a 88 year old mom and I hate what my dx has done to her . Pat

[Poco]

My brother-in-law was here and he said he was going to try to not move his arms for an hour and see if he could do it to get a feeling of how it must be to be paralyzed. He couldn't do it, not even 15 minutes. I tried it as well and I just got this panicky feeling and couldn't do it either. That is probably the closest way to understand the physical limitation of this disease as a normal functioning person. Could do the same test with the legs. Just thought I would throw that out there.
Phyl

[CindyM]

One of the things I worry about if I do have this disease is how I will manage keeping still. Ever since I was a little girl I have been a person in constant motion. I know I will figure it out if the time comes, but sometimes I wonder how an Attention-Deficit person lives in a paralized body....Cindy

[quadbliss]

Phyl, Try taping your mouth closed and sitting in a room full of people without participating in the conversation.

Cindy, I used to worry about that too, but like all the other symptoms, when I actually got there, it was not as bad as I anticipated. This is why I stopped worrying about the future. I think about it long enough to make a plan, then I return to the present and live in the moment.

Mike

[CindyM]

Good advice, Mike. Usually that is my philosophy too but once and awhile the future looms. The other day my daughter had to remind me that I raised her to not make plans based upon what MAY happen but to frace live with confidence. Guess I need to practice what I preach!:-D ENjoy your day, Cindy