Paul Tavano

Amanda started the topic Most Common Questions in the forum Living With ALS 1 day ago

When you were (or if you are) first diagnosed what did you want to know from your doctors? What information and resources were the most helpful?

Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 4 days ago

David – the lumbar puncture was painless?? Seriously??? Wow! That is so awesome. How are you feeling now?
Amanda

Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 4 days ago

David – the lumbar puncture was painless?? Seriously??? Wow! That is so awesome. How are you feeling now?
Amanda

Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 4 days ago

David – the lumbar puncture was painless?? Seriously??? Wow! That is so awesome. How are you feeling now?
Amanda

Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 4 days ago

David – the lumbar puncture was painless?? Seriously??? Wow! That is so awesome. How are you feeling now?
Amanda

Amanda started the topic Please Keep In Mind in the forum Living With ALS 4 days, 19 hours ago

Hello Forum Members,

Please keep in mind that our forum is intended to be supportive and informative. We are not medical professionals and no one should be asking for medical advice, medical opinions or giving medical information.

We all know, all to well, that the road to ALS is long and usually frustrating. We also know that there are often…[Read more]

Amanda replied to the topic Speak up and let us know what topics are useful! in the forum Using our Forums 1 week, 1 day ago

Carolyn, I think that would be a great post and others would like to learn about it too!
Amanda

Amanda replied to the topic Clinic Visit Routine in the forum Living With ALS 1 week, 1 day ago

Kathy, Carolyn, Mark and Marianne – This information is awesome and highlights some of the kindness that exists in our world. Mark I agree with Carolyn, your words are so accurate! When we post discussions about end of life, hospice or similar topics, we give a great deal of thought to the words we use. I think it is extremely important that we…[Read more]

Amanda replied to the topic can someone give advice? in the forum Diagnosis Information and General Questions 1 week, 3 days ago

Jerry,
That is a lot of history and information to consider. Please keep in mind that we are not professionals in the medical field and we need to be cautious about responding with advice. What our members can do is compare notes and experiences on how ALS has manifested for them or their loved one. As you know each case is different; however…[Read more]

Amanda replied to the topic Phases of Clinical Research – ALS treatments in the forum Research Topics 2 weeks, 2 days ago

You are right, it does not mention anything about investors because that wasn’t what I was searching for.

Amanda replied to the topic Understanding PFT in the forum Diagnosis Information and General Questions 2 weeks, 4 days ago

Lisa,

That sounds so frustrating, beyond frustrating!!! Are any of these medical professionals specialist in the are of ALS? Have you inquired at any of the ALS clinics?

I sure hope you get some information and support soon.

Amanda

Amanda started the topic Phases of Clinical Research – ALS treatments in the forum Research Topics 2 weeks, 5 days ago

“The phases of clinical research are the stages in which scientists conduct experiments with a health intervention to obtain sufficient evidence for a process considered effective as a medical treatment. For drug development, the clinical phases start with testing for safety in a few human subjects, then expand to many study participants…[Read more]

Amanda replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 2 weeks, 5 days ago

@Mark! How are you feeling with the new medical team? Bravo for taking charge of your own medical treatment and pursuing a team that is better suited for you! I wonder if many people just “go with the flow” when they are faced with rare illness such as ALS. I could understand since it is all so overwhelming.

Stay positive and keep us posted on…[Read more]

Amanda started the topic Clinic Visit Routine in the forum Living With ALS 2 weeks, 5 days ago

How often do you go to the ALS Clinic or neurologist? Has the frequency or time in between visits increased or decreased over time? Do you see any other doctors or medical professionals on a regular basis and if so, how often. What happens at your appointments (if you are comfortable sharing.) Do you feel that this schedule is sufficient?

Amanda

Amanda started the topic Clinic Visit Routine in the forum Living With ALS 2 weeks, 5 days ago

How often do you go to the ALS Clinic or neurologist? Has the frequency or time in between visits increased or decreased over time? Do you see any other doctors or medical professionals on a regular basis and if so, how often. What happens at your appointments (if you are comfortable sharing.) Do you feel that this schedule is sufficient?

Amanda