SO HOW DO I FEEL ABOUT HOW I FEEL????

SO HOW DO I FEEL ABOUT HOW I FEEL?

HOORAY!!! I finished the last set of treatments yesterday with virtually no side effects today!!
As I conclude this first round of treatments, I am pleased with the fact that the fasiculations remain minimal.

I arrived in Panama telling myself to expect nothing from the treatments, therefore, any benefit would be a victory. Doctors had been very clear about ALS patients getting only minimal, if any benefits and they would not be sustaining. However, on the first day, in the clinic, several of the patients, not doctors, told me about a woman from the Dallas area who has ALS and had just left and had experienced amazing results. So… my expectations sky rocketed with the hope of increased strength through out my body as had been her experience. As the days progressed, and the treatments continued, and no additional strength came, I found myself discouraged. It’s amazing how our expectations can unknowingly get away from us and cause us pain.
I’m reminded how many times this has happened to me in the past in other areas of life including marriage, vacations, work, ministry, etc. Expectations can easily get away from us. I get in trouble with expectations because I have learned that I am wanting to control the outcome.
I took my disappointment to God this morning and again, He gave me peace about just trusting in Him and He gave that peace that truly passes all understanding.
God has replaced my expectations with hope and that hope is in Him.
Therefore, I return to Dallas, contented, with the victory of reduced fasiculations in hand. Additional improvements can occur over the next weeks and months but I will keep my hope in God, not in the treatments.

I scheduled my next appointment to return to Panama City for early November.

Life is a journey and thank you for letting me share this portion of that journey with you I pray that you are enjoying your life's journey too!!

Panama John

A TYPICAL TREATMENT DAY

A TYPICAL TREATMENT DAY---Monday, Wednesday. And Friday

9:45 Handicapped van arrives to load us and we depart for the gym for PT

10:00-11:00 ish (Panamanian ttime!!) I do PT which is stretching everything and light strength training (with lots of assistance.)

11:30-2:20 – We have “fun” at Multiplaza mall. We do mall walking, eat lunch, and grocery shop. The Mall is directly across the street form the Stem Cell Instituted and is comparable to North Park. We did not expect such high end shopping.

2:30-3:30 ish I have my treatment. Treatment always involves a spinal injection of stem cells and on Fridays it also includes an IV of stem cells. Both injections are the same CD-34 and mesenchymal (MSC) cells. (It sounds like they are saying “missing camel) – you can image the visual we had when they continually talked about injecting missing camels.
I have now grown more accustomed to the spinal column infusions. They are easier now because I am accustomed to the pain and pressure the procedure always delivers.
I still come off the table when they enadvertedly hit a nerve. You know that they take it seriously because they hook you up to heart, blood pressure and pulse monitors.
A minimum if two physicians and one RN are present during the procedure.

3:30-7:30 We race back to the Condo and lie flat in a effort to avoid extreme head and back aches. Flu like systems start, but don’t last too long. Afterwards – I start pain meds, eat and climb in bed – preparing for yet another miserable night.

In an effort to balance the negative aspect – here are some areas which we are really enjoying.
Our condo is small, but nicely appointed and serves us well. There is a pool area on the 37th with a glorious view of the Panama Canal which we enjoy watching the ships pass through.
There are of course, wonderful seafood restaurants everywhere.
The people are warm and friendly and very willing to help if you need their service. They are not very helpful in stores – no possibility of a tip, maybe.
The city itself is very modern and new and there is construction everywhere. I counted over 23 condo units being constructed presently in excess of 30 stories. There is not recession going on here. If someone wants a job, they can find one with no problem.
The weather has been much better than we anticipated with highs in the upper 80’s – most days. We have had a few really hot days which remind us of what we are going to be coming home to.
I plan on telling you more about how I am feeling after my last treatment which is in a couple of hours.
At this time, I haven’t experienced any new improvement except the reduction in muscle twitches.
Panama John

Those Cells- post #4

I awoke yesterday (Monday morning) with a smile on my face realizing that my journey was half over. Today was a cell infusion day but I will not allow myself to think about the procedure. I force myself to think about positive things and avoid the negative. I never went anywhere in life thinking about the negative and if you dwell on the positive, at least people will enjoy being around you. The most positive thing of the day is receiving those stem cells. There are basically two types of stem cells that I am receiving. One is CD-34 cells. These cells promote the flow of blood at a cellular level through the body. They even promote the generation of new vessel growth. Without life giving blood, cells and tissues become sick, mutate and even die. The next stem cells are the MSC cells. These cells repair damaged or injured cells and facilitates the immune system to not attack the body. So in laymen’s terms, these cells working together increases the live giving blood supply to all the cells in the body and provides first aid to damaged or dying cells. In addition, the immune system is calmed which allows it not to attack it’s self. The result is the body is given the opportunity to heal it’s self.
There are a variety of different conditions and illness that people come here to be treated for. Some of these are: MS, (many here with this illness), CP, spinal cord injuries, autism, and chronic fatigue syndrome I’m sure there are many other illnesses which people are being treated for with this therapy, but these are the ones we have encountered. I will be learning much more when I get to see the lab with my own eyes. We have a tour of the lab on Thursday. Most patients are receiving their own stem cells which are taken from their fat cells. I am interested in learning more about how they are engineering these cells into those two stem cells.
The doctors have been open and candid with me that any positive treatment result are none sustaining. Their experience treating other ALS patients has not produced any sustainable results. At best I can hope to slow or stop the progression of the disease, but only for about 90 days per treatment. To sustain myself for the next years would require four, two week trips back to Panama , not to mention the” not so fun treatments.”
So --- Why am I here?
The answer simply put is – to stall the deterioration in three primary areas in my body and maintaining hope that UT Southwestern may find a viable treatment. My doctors there are very encouraging about what the near future holds.
The three primary areas of deterioration I am currently facing are:
1. the complete loss of my legs. That would result in the need for around the clock care.
2. loosing the ability to swallow which would require the insertion of a feeding tube.(I would hate to get calories through a tube when I enjoy eating so much)
3. loosing the ability to speak. I currently feel like there is a ball in the back of my throat pressing against my vocal cords.
With the current speed of the progression of the disease, I am sure to loose each of these this year if I find nothing to slow it down. It was pretty easy decision to make.
So it is back to the positive thinking for the day and those life giving cells.
I am praying for God’s hand to be at work in the midst of these treatments.
Thank you for your continued prayers.
Panama John

Beautiful People--post 3

I am struck by the number of Beautiful People I have met since arriving Panama. I see them daily at physical therapy and every other day at the hospital. They are not the exceptionally attractive local Latin Americans. They are the very people that I use to keep my distance from because I thought I could not relate. Today I find myself looking forward to our daily greetings. These are people whose bodies have terribly failed them. Either through an accident or by some internal malfunction their bodies have failed. Their arms or legs may be contorted. The tilt of their head may not be quite right but they are now beautiful to me! You see I am now one of these people. It was as I was laying on the physical therapy platform it finally dawned on me that I was one of them. as someone else was manipulate my arms and my legs in order to move. I am uncertain why it has taken me so long to come to this realization and to the realization of just how beautiful these people are.

We talk to each other in the waiting room's, we lay beside each other in physical therapy.. We get to know each other and look forward to seeing each other. These are people like you and me with stories of life, with hopes and dreams and children and grandchildren. The exception is that their stories have been interrupted by something that they never thought would happen to them. Most of these Beautiful People know that nothing short of Heaven will fully restore them but they hold out hope for some improvement. So the next time you see one of us approaching in a wheelchair don't look away. When you smile or say hello it makes us feel just a little more normal. It might also help you to think "here comes another Beautiful Person"!

Something is different Post 2

I awoke this morning (Saturday) and immediately realized something about my body was different. I began to explore the list of possibilities -- I didn't feel dizzy or nauseated, nor was my back or head pounding -- none of these. The thoughts rumbled through my mind - what could it be? Then to my amazement - I realized that my muscles were not twitching as they had been. My body seemed quiet and still in bed which is something I haven't experienced in quite some time. It was a distinctly different feeling. They were not gone all together, but greatly reduced and some totally gone. I had been off my antibiotics for two weeks and they have been the only thing that suppresses the fisciculations.
As of yesterday, every remaining muscle in my body was twitching -- many with great intensity. But yesterday, I also received two treatments -- one in the spine and one IV. Something is working.
To date I have had a total of three treatments .
I didn't tell Margaret til noon today because I wanted to make sure my mind wasn't playing tricks on me. It feels good to take a step toward normalcy.
Next week there are four more treatments - Monday, Wednesday and Friday.
I continue to covet your prayers.
"Something different" is feeling pretty good!!
I (Margaret) am adding a disclaimer -- entered by John's non perfectionist wife."
God has such a sense of humor placing me as John's primary care giver. It's added alot of "spice" to our marriage.

first po,st from Panama

WE made it to Panama again. The first time was on a cruise ship 5 years ago. This time it is for experimental stem cell treatments. This is another step in the long journey in an attempt to survive from the diagnosis of ALS.
We arrived late Sunday PM and have been treated like royalty. My first treatment was Wednesday. The blood work and check in was Monday. Tuesday my blood and the perspective stem cells were matched The introduction of the cells into my spinal collum took about an hour. It was not a pleasant experience and I would describe it in greater detail if it were not for the G rated nature of this blog. I laid down for the next 4 hours in an effort to minimize the risk of a bad head ache. Wednesday night was one of the worse nights I have experienced. Dizziness, extreme fatigue, chills, back ache, and flu like symptoms were all a part of the experience. It was followed by the worse head ache I have experienced in forever. Other than that it was a piece of cake and I can't wait til tomorrow when I get to have another one!!! I am also having an IV but it is suppose to not be too bad.
Everyday I have physical therapy and I will tell you more about that in later post.
Today has been spent mainly managing the head ache and back ache which meds. It helped to take my mind off things by taking a tour of tour of the Panama Canal and old town.

This blog is about me