Category Archives: Research

Some thoughts – Type 1 diabetes

Looking at the category tables for money assigned to disease, for research, Type 1 and Type 2 are lumped together. In those tables the NIH estimates that from 5 to 10% of diabetes is Type 1.

My gut tells me that most folks think Type 1 diabetes is a done deal, don’t need research, it can be controlled, let’s move on.

For those that feel that way, there is no taking into account the lifestyle Type 1 diabetes dictates. It’s pretty damn rough. It’s a 24/7 issue for the parents, the patient and the siblings.

There is no cure, just treatment, and it’s expensive, time consuming, stressful and painful.

In my opinion, we can’t stop here, not even close to here. I’ve been near the trenches for a few days and I was absolutely shocked at what I saw.

Here’s a link to those tables . . .

https://report.nih.gov/categorical_spending.aspx

Scientists- Alzheimer’s- Beth Stevens

appreciating the National Institute of Health

Trying to learn more took me to the NIH Categorical Spending page this afternoon. It’s setup by disease in alphabetical order.

Just looking at the amount of disease names left me in awe of the responsibility they have.

Here’s a link to the page I was studying . . . . .

https://report.nih.gov/categorical_spending.aspx

do lawmakers pass so called letters of intent? do they forget about them?

It seems to me, they might sometimes.

I think I’ve noticed that a lot of, so-called letters-of-intent, pass unanimously.

I think I have also noticed, that everyone runs around congratulating each other afterwards, even though no real action, that may help people, has been taken

Yeah I’ve gotten excited about letters of intent too.

I think sometimes nothing comes of them, but every once in awhile something does.

Trying to find a place to see how the letter of intent is progressing, can be very hard, and sometimes when you do, there have been no updates.

This thought process has made me want to take a look at how I raise awareness. Do I really look at how beneficial what I do is? Are there parts of it, that are just hype?

I want to do that, the self-criticism, if there is some, should only help me.

Thank you for reading my blog.

My thoughts – how does it feel – scientists

No expert here, just someone that had the chance to speak with a few scientists.

I can only try to imagine the excitement when the path they took looks like it might be the beginning of a cure. I would be extremely excited, and even more so, if it was approved for a clinical trial on humans. The day the trial started would be big for me, maybe I will save lives.

Then the call, or email, or however they do it comes, and the news is not good. Wow, I can’t even begin to imagine that. I appreciate the work, the emotional roller coaster and the individual.

 

my thoughts – diabetes Type 1

Most of my day yesterday was spent using Google to research whatever came to mind about Type 1 diabetes. The whole thing started because I wanted to know more about the camps I had heard of.

At the conclusion of my day, I felt the the Type 1 diabetes camps are a huge deal, a must. I found a bunch of them, all over the country, and a lot of them are provided at no cost to the attendee or the parents.

It seems that Type 1 is one of the most psychologically and behaviorally demanding chronic illnesses facing Americans today. I found many estimates that speak of higher than normal suicide rates, of the patients, and much higher than normal divorce rates, among the parents. Another estimate spoke of maybe as high as 70% of insulin overdose was on purpose. Even yet, more research suggest that siblings of Type 1 patients have more problems to work through, later in life, than siblings that have no diabetes to contend with. To that, some may say “no duh” but I never thought of it, so others may not have either.

I found a Dr. Denise Faustman M.D. , PhD that is a couple of years into the second phase of a clinical trial that may hold a cure of sorts, it’s a vaccine. The research center is at the Massachusetts General Hospital. I read that Bill and Melinda Gates, and the Lee Iacocca Foundation has donated money to the project. Her work centers around the BCG vaccine, and it has been around for over 80 years.

I came away from this day with a feeling, and I think I’m right, that Type 1 requires constant management, no letting down. One other thing I read was that children that have their levels checked less than three times a day, it is again, estimated, cut down on their life expectancy by possibly as many as ten to twenty years.

One other thing about the camps, and I sure see their value, it’s noted that the camps are usually for the patient to attend and this may give some parents time for a brief rest, if needed. What I’m getting ready to type here sounds horrible, but we are human. It was noted that many parents and siblings, of the patient, over time, build some resentment towards the disease and it may manifest itself in their behavior towards the Type 1 patient.

I can say this, I’ve never dealt with anything like Type 1 Diabetes, not even close. My heart goes out to all involved.

P.S. I also think we have lots of folks working to make things better for Type 1 diabetics, and I believe that may also make life easier for their families

.

research – just a gut feeling

The articles on the internet have slowed to a crawl, the ones that speak of a cure for alzheimer’s. The body would speak of how one thing or another had affected mice, in a positive way. Something has changed. The headline would have some readers thinking the cure had been found.

Many research detectives scour all the data they can find for ongoing promising trials, and right now many are saying there is not much exciting on deck.

I do the best I can at this and remember I am but a layman, with a gut feeling.

While speaking with a research scientist recently he told me to keep my fingers crossed about the possibility of luck. I will do just that. He said that does happen sometimes.

The work in Columbia, the Zuckerberg project and the Gates Foundation endeavor create excitement in me. The NIH set aside for fresh scientists, with new ideas, sounds pretty good.

My post is meant to record my thinking at this point and maybe spark interest enough, that if anyone reads it, and is interested, they will go to Google, and begin looking.

I don’t seem to have doubts about a good outcome to all of this, just wonder about the time frame.

the flow of money needs to remain steady #ENDALZ

There has been speculation that some lawmakers may not want to increase funding for finding cures and treatments because they don’t see enough good things, at the moment, coming from science. If that is the case, I don’t think they understand how it works.

If you give someone an hour to do four hours worth of work, and then you’re disappointed they did not finish, you may have a thinking problem. The money from Congress is never steady enough, it’s so piecemealed. Institutional knowledge is lost all over the country, scientist are going to other jobs.

Alzheimer’s – some optimism #ENDALZ

Failed clinical trials and the continued lack of money for research leaves me with a feeling of pessimism. Bill and Melinda Gates getting involved is big to me, as they announced they are going to help scientists examine other theories. The longitudinal study in Columbia is exciting because they feel certain that everyone in the study will get alzheimer’s. The NIH is setting aside some money for new scientists, with fresh ideas. Thoughts of those things brings a feeling of optimism.

Hearing success stories from caregivers, accounts of them adapting, reading about laws being passed that may help them, and reading about the growth of support groups, memory cafes and more community involvement brings optimism.

Reading that our nation, as a whole, is eating healthier and exercising more is great news. That’s talk about prevention right there, good talk.

A lot of progress has been made in many areas. Necessity, sometimes, can be the mother of invention.

Research – different paths sounds interesting

A few months ago I took a trip to the Burrell School of Osteopathic Medicine in Las Cruces New Mexico. What I saw made me realize we are trying alternative ways to prevent, treat and cure disease.

Recently Bill Gates told Maria Shriver that he was using his resources to work with folks concerning Alzheimer’s research that are walking down different paths , than the norm.