Bill

Very good guidance. Item 1  large cost and item 6 lack of regularly measured validated outcomes and item 8 evidence of benefit is anecdotal ( at least after years ago studies). Wouldn’t this cause us to even question Riluzole and Radicava? My neurologists clinic and university specialists didn’t think either worth it for me. Big lack of data and…[Read more]

I’ve definitely slowed down. Being limb onset and heavily focused in one hand and arm, everything requiring two hands is slow and tiring. Need to constantly adapt.  I’m 2.5 years post diagnosis and likely about 4-5 years into disease. ALS just slowly over last 6-12 months affecting my bulbar muscles and tongue in particular. Speak ok just need…[Read more]

My next REFALS-ES visit is back on live visit in two weeks. I like getting the updates on SVC and EKG.

I am for testing my kids for any als-FTD mutations. Both of my adult sons would like to know, but testing  has yet to find my family’s mutation. I’m hoping by the time my kids reach my age we will have a treatment. The sooner they knew the better.

I was diagnosed Jan 2018. I have different aged grand kids. I’m “lucky” that my progression was slow coming on and slow ongoing. Honesty was best with oldest 16 years old at the time. Fortunately, my description of its going to be slow was honest.  The youngest was 8 and we told him that I have a nerve issue. Because I am slow they have only s…[Read more]

I neither feel obligated nor reluctant to tell people I have ALS. I told my family directly as well as close people at work or friends. At over two years after diagnosis, I’m a little different than many in that most people won’t notice anything wrong. I do at times wear a wrist brace and a couple of things to control finger curl. They don’t usual…[Read more]

I’m in REFALS-ES study at USF in Tampa. My study “visits” are being done by phone. They do ask that before the phone visit that I get a medical professional to check my heart pulse rate. Kind of silly that can’t take it myself. The local ALS clinic here although closed was nice and did it for me with the staff they had in to take calls and email issues.

In prospective, flattening the curve and social distancing will go the way of requesting a side bar. I bet a lot of young people don’t even know where  that was popularized.

I feel especially for caregivers. This seems to me a study for the sake of study money. It is not a mind opener that caregivers are depressed. Losing someone they love, overwhelmed physically and financially. I see the depression daily with wife. Come on, just ask us pALS if their caregiver is depressed or stressed. Maybe even shockingly, talk to…[Read more]

I stayed at my prediagnosis weight for about a year. I really did nothing special for eating habits. The health professionals told me the same old “don’t lose weight”. After a year I decided to lose some weight to get to what I felt was a more comfortable weight. I went from 225 to about 208. Basically just watching my diet is all. This isn’t…[Read more]

Andy’s site is a great resource. Really comprehensive. One site that is a daily go to for me is PatientsLikeMe. There are lots of pALS on there daily. People ask questions and get answers from fellow pALS. They express fears, daily struggles and successes. Lots of pALS evaluations of drugs and supplements. I’ve met so many people there who sha…[Read more]

I do not take Riluzole. I’ve read so many so so reviews. My Neurologist (head of a university ALS clinic) advised me that it would likely not do much for me. He has not been impressed with results. I am admittedly a slow progression without the drug.
I think it sad that we as pALS need to rely on anecdotal opinions on important decisions like t…[Read more]

I was not asked about environmental factors when diagnosed in 2017/18.  Related to a later study I was in with UofMiami, I completed a detailed lifetime survey about hobbies, everywhere I lived, occupations and such which very much dealt with environmental factors. I was in preFals and CReATe ALS there so it was related to one or both of those.
I…[Read more]

First time I saw this and at first blush I don’t think it is an improvement. Problem I saw is interpretation of “with difficulty “ same subjectivity as ALSFRS. A little difficulty? Major difficulty? Big difference between those answers. There is also age that affects some things with or with ALS. With my age (70) , I find it harder to get up from…[Read more]

I did stop “working out” when I was diagnosed. Frankly the warnings from the PTs seemed to discourage. I got rid of my heavy  weights and switched to much lighter band work routines focusing on big movements and flexibility. A little more strength focus on nonALS muscles. I’ve gotten little advice but what I do I think works for me.

Let’s not forget that in other than familial ALS science has not  clearly identified a cause. That’s where stats do come into play. Obviously from some data, there is exposure to brain trauma which increases the risk of developing ALS. Whether it’s the cause or makes people more susceptible to the cause I don’t know.
I have never had head trau…[Read more]