On this day

Social media is a great way to keep in touch with friends and family but some of them have a service that will give you a memory or remind you of what you did ‘On this Day’ last year, 2 years, 5 years ago and so on.  I have one called time hop and I like it as it lets me see also things I put as a status on Facebook.  Some make me laugh at the silly things posted or fun times had. Others make me tear up from happy events or sad ones.  One of my good friends Tracie sent me one this weekend of me finding out she was pregnant with twins, and thankfully the video didn’t show the all-out ugly cry I had but you could hear it. This was because Tracie was having a real hard time getting pregnant so this was just pure unfiltered joy. Until recently, I never thought that these flashbacks would remind me of what I have lost. Mainly because my posts and pictures are of happy times, funny things or events. The problem I have had with the flashbacks lately is that it is a constant battle of what I want to be reminded of since some of the reminders are of Phyllis. First, I don’t want to forget her and won’t forget her but it takes a toll on a person who has had to lose someone close and when you feel like you are doing fine, a walk down memory lane that just happened a year ago just rips open that pain and reminds you all over again of what you have lost and how quickly it happened.

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Hunter’s School Spring Concert: Last Year May 12, 2016

These are some of the things running through my mind when I see these flashbacks:

‘We didn’t know she had ALS at that time’                                                  ‘She had a good life’

‘We had so much fun’

‘I miss her terribly’                                                               ‘What If I knew earlier she had ALS’

I jump off the downward slope of depression and sadness that anyone can quickly fall into.  But let’s face it, I don’t have time for that and Phyllis would be pissed if I allowed it 🙂

May 12th 2017 – Some news on Phyllis

Some of you did not know this, but Phyllis donated her brain and spinal cord to the U of M Brain bank. They were extremely happy and appreciated the donation because very rarely do they get the chance to get both the Brain and Spinal cord. Today I found out what they are doing and it is quite interesting.  I will keep the medical speak to a minimum but I was also able to find some articles if you are interested in reading further.  It is ALS Awareness month so take some time to check it out.

When Phyllis’s donation was given to the U of M, the first thing that happens is that it is de-identified.  Meaning it is assigned a number and the general patient information that has been gathered during her time at the ALS Clinic are captured like age, health history, local, ect. But her actual name and personal identification are removed. This is done for patient privacy.  What it means is that we can’t follow what the results are unless we are in the medical profession doing the research. It may be frustrating, but then I think, would they want someone who is a pain in the ass like me calling them every month to ask how things are going, what happened, what are the results? Cause I would. Like seriously I would. 🙂

Here are the research trials her donation has been targeted for:

Understanding the changes in your immune system with ALS.

This is one is discussed here and the U of M Clinc is part of the collaborators:

In collaboration with Stephen Goutman, M.D. (U-M Department of Neurology) and the Michigan Institute for Clinical & Health Research, we are identifying upregulated pro-inflammatory immune cell populations that correlate with ALS disease progression. The goal is to ultimately identify potential biomarkers or therapeutic targets of disease.

People speak: They are looking at how the immune system of an ALS patient actually attacks the ALS protein in the early stages basically stalling or delaying the symptoms. But eventually the immune system starts to lose its battle and then the ALS protein wins. Dr Goutman was Phyllis’s Dr and when I spoke to him today he said their goal is to not only target this therapy for the immune system, but by doing it at an earlier stage in the disease, it will help prolong life and slow the progression using the patient’s own immune system with a little help.

The TDP-43 protein is a celebrity.

So this Protein has gotten some press lately,  If you read this news article, they have released a new treatment for patients.  This is the first since 1995. While Phyllis’s donation didn’t go to this specifically, what hers is going towards is the continuation of the research around this little protein. Dr. Sami Barmada is heading up the research that will continue efforts around determining the antibodies or ‘roadmap’ of the protein so that they can track and monitor the antibodies as they are being testing with new treatments or drugs.  What does this mean? The better you can track something, the quicker they can find treatments or even a cure.

Mothers day..

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First, to all the moms out there, Happy Mother’s day.  Give big hugs to those that are here and call the ones that are far.  Plant a plant, light a candle, or say a prayer to the ones that are no longer here. I hope it is a good one for everyone.

The firsts are always the hardest.  But I will be spending time with John’s mom and My mom and enjoying that time together. But on that day with this being the first Mother’s day without Phyllis, and with me getting the flashbacks of us last year, I will remember that we have those memories and that we can always smile.

Peace, Love, and Happy Mothers Day

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