2016 Oregon Ride to Defeat ALS: A Life Beyond Measure – Ride to Defeat ALS®

Source: 2016 Oregon Ride to Defeat ALS: A Life Beyond Measure – Ride to Defeat ALS®

Rasjad Lints Memorial Video

Dear Reader,

I want to thank Janie and her son Bernie Cohen for putting this video together. We had to remove some of the music because U-Tube wont publish copyrighted materials. Many of you have been asking me to post this. It was just too painful to preview the material and get this done till now. Enjoy. https://www.youtube.com/watch?v=kmoQafthe0g

Rasjad Lints Celebration of Life

Hi Its Susannah here -wanted to let you know about Rasjad’s memorial.

Time: Saturday February 6 , 2016 -3:30 -5:00 PM

Location: Luepke Senior Center community Room at Marshall Center

1009 E McLoughlin Blvd, Vancouver, WA 98663 http://www.cityofvancouver.us/parksrec/page/fifty-and-better

Phone:(360) 487-7050

Donations in Memory of Rasjad Lints can be made to the Oregon chapter of the ALS society they helped us in countless ways. www.alsa-or.org/

The room holds 300 All are welcome. Light refreshments afterward.

Rasjad’s Final Post

It is with sadness that I am telling you that Rasjad passed away on Saturday January 9, 2016 around noon. Susannah and Lionel and close friends were at his side. It was extremely peaceful. During the last couple of weeks, his breathing was getting much weaker. He spent more and more time resting. However, Rasjad managed to complete a couple of blog posts  about his departure. Below is a post he wrote a couple of weeks ago with instructions to post after he passed.

A memorial service is planned for February 6, 2016  and w’ell let you know time and location as soon as we get it arranged.  Donations in his memory can be made toOregon chapter of ALS society, http://www.alsa-or.org

With love Susannah and Lionel Lints

Rasjad’s Last Post 

Do not think that it is a tragedy that I died or that there is something terribly wrong about my situation. I don’t. There is a time and place for each of us and this was mine. I lived my life well and have no regrets. I made a difference in the world – isn’t that what most of us want?

I was extremely fortunate to have met my life partner in high school and enjoy 40 years marriage to my best friend. We were blessed with our extraordinary son. What more could I want?

I believe strongly in Almighty God and am now in a wonderful place that I’m sure defies description. Don’t worry about me, I’m just fine.

My Latihan

In previous posts I have talked about Subud and the worship  exercise called the latihan. Subud is not a religion and I suggest that you review those posts if you want more information about Subud. This post is about my latihan that I had last night.

A number of Subud brothers have been coming to my house weekly to do latihan with me (men and women do latihan separately). Last night was one of those nights. What I received was very powerful. As I have said before  trying to put into words what I receive is a poor representation of the actual experience – but I will try.

I have been fearing my impending death. All PALS (people with ALS)  eventually die from respiratory failure – unless they get a tracheostomy, which I am unwilling to get. Currently my respiratory status is getting worse and I can see the end is near.

Back to my receiving –  I have been fearing my death. What I got was that my mind was fearful and yet my soul was not. However my mind had been very wonderful and useful for this world but my mind and body would be left behind while my spirit would soar on to the afterlife! What I experienced is beyond words. But I will say I no longer fear my death.

Rasjad

Long overdue post

It has been over a month since I last posted. The truth is I’ve become remarkably disabled in the last couple of months. My activities of daily living take a huge part of the day. In the past my right hand and arm are what I used to “talk” through my Android tablet.  Well those parts of my body are failing fast.  So I working on using a Tobii Dynavox eye gaze system to communicate.  Check out these amazing computers on YouTube. Quite remarkable.

Rasjad

Grunting

A decade ago I attended at Doernbecher Children’s Hospital. I would regularly admit kids in respiratory distress from asthma.   Now contrary to most people’s understanding the problem with asthma is not lack of oxygen it is carbon dioxide accumulation.  (They are can have oxygen desaturation but the fundamental problem is too much CO2.)  The signs of a bad asthma attack can be fast breathing, the expiratory phase of a breath being longer than the inspiratory phase, intercostal and suprasternal retraction, and grunting.  Grunting occurs as the kid exhales  she makes a grunting sound.  It’s the body’s way to expand the lungs to enable more CO2 to be expired.

As usual a tangent – cardiac tamponod is a life threatening condition in which fluid accumulates around the heart and compresses the heart eventually leading to death if the fluid isn’t removed quickly.  It can be a difficult diagnosis to make and time is working against you.  A subtle finding are distant heart sounds but that can easily be missed.   A simple bedside procedure called pulsus parodoxus is diagnostic.  And training Medical Students is very critical.  But  this condition is rare and when it occurs the last thing you are thinking about is Med Students.  You are thinking about sticking a large long needle and syringe into the pericardial sac!  (Or in my case finding a doc who knows how to do that.)

Turns out that kids with a bad asthma attack also have an abnormal pulsus parodoxus.  So I would always take the opportunity to drag a few Med Students to the kid learn how to do the procedure.

Right about now you are probably wondering what this flight of ideas has to do with ALS and me.  Well the last few months I consistently make strange sounds on most of my exhales.  It can sound like a moan, a hum, a groan, or other odd sounds.  It is remarkably hard for me to suppress the sounds. 

Then I had one of those “ah-ha” moments!  I thought the sounds I make are similar to the asthmatic kids when they are “grunting”.   I reflected on the fact that ALS and asthma can lead respiratory failure via excess CO2 accumulation.   What they have in common is the respiratory muscles’ inability to meet the demands of the body to get rid of the excessive CO2 – although the mechanisms of the respiratory failure are very different.

In kids with an asthma attack grunting is a late sign before they go into complete respiratory failure.  So when it happens it gets the doctor’s attention!   In my case it is obviously not an impending respiratory failure.  Rather I think it represents my slow respiratory decline.  Well I did just get on the Kaiser Hospice service which makes sense given my respiratory status.

Rasjad

A Real Treat

So my friends from Kaiser made me the following video.  It blew Susannah and I away!  We were balling like babies.  Check it out.

I want to thank everyone who contributed but especially Justin, who did the filming and editing and Sharon, who had the idea.

Thank you guys.  Love you all!

Rasjad

A Hell of a Way to cure Hypertension…

So I’ve been hypertensive for about 3 years, well controlled with antihypertensive drugs.   Weirdly it seems like my ALS has cured my hypertension!  For the last week my blood pressure has been on the low side even though I have not been taking my lisinopril.   I would definitely NOT recommend ALS as a antihypertensive treatment.

Strangely I’ve also developed eczema on my face.   Apparently it’s not common in ALS so I suspect it’s more diet related.   Being obese is protective in ALS.  As a consequence they want me to gain weight which means I’m eating all sorts of garbage I would never eat and don’t really have a taste for; butter,  cheese,  other high fat foods.

Now cold feet ARE something reported in ALS.   My feet are often freezing even if it’s warm out. Strange.

Rasjad

Moving Day

Tomorrow is moving day.  We bought the house within 3 weeks of getting my diagnosis, closing on April 15th. It only took 3 1/2 months to get the bathroom remodeled so I can use it!  It’s total chaos right now – hopefully better soon.  I’ll let you know how it goes.

Rasjad