Sunday was a rest day. We did go to the casino next door to the hotel and we were able to watch the Dallas game in their sports bar. Unlike Las Vegas casinos there is no smoking in the casinos here in Panama which made the whole afternoon enjoyable. Just beyond the casino there is a food court that has several fast food restaurants and we stopped in and picked up a baked potatoe and salad from Wendy's and took it to the room where we watched Sunday night football.
On the way back to the hotel we checked e-mail and I checked out the MS Direct website. We are still using the hotel computer center, which is a small room with two computers terminals, because we cannot connect to wireless at this location and they want $7.50 a day to plug into wired system in our room. I discovered a post that wrote about a conference that was held on the 11th and 12th of September outlining a proceedure being done in Germany where researchers discovered that all MS patients tested had a narrow vein in the neck that caused blood to become stagnet as it tried to make it's way back to the heart. The proceedure being done by the doctor there was to enlarge that vein restoring bloodflow and they were saying that MS symptoms in all patients treated had decreased. The official name for this condition is, chronic cerebrospinal venous insufficiency. I had a panic attack at that point, questioning if I was proceeding on the correct course of treatment. John and I talked it over and decided that even if stem cells did not correct the cause of the disease that they would still repair the damage and buy time until the cause could be found and corrected.
In the morning I will have my first apportment with the Stem Cell Institute. I'm concerned and anxious and I'm worrying about things that haven't happened even though John says I shouldn't do that. He lives in a strange world grounded in a reality that not many people can conceive. The Cowboys won!!! At least I have that going for me.
Tuesday, September 15, 2009
Monday, September 14, 2009
Alive and well in Panama
Yesterday was filled with visits to family and my Dad and today began early with a ride to the airport by my sweet brother-in-law.We had three suitcases that were very heavy. I think all our clothes could have fit in one small suitcase but we brought over 80 lbs of supplements with us. Mostly Univera products. The flight was a little over four hours from Houston and uneventful although I did have a nice view of the canal as we were landing. As we walked off the plane two women in pin-striped suits greeted us then wisked us off through customs in the diplomatic lane. One of pin-stripped ladies took our paperwork and passports and the other moved us on through the airport where we ran our carry on`s through a screening machine then we were escorted upstairs to a vip lounge area. We waited there for about 15 minutes until they had our bags loaded in a van then we went out and climbed in the van and headed into the city. It`s a good drive into town, took us perhaps a half hour. We checked into the Torres de Alba hotel and found we were given just what we asked for, an upper floor room away from traffic noise and a king size bed.
It isn´t a four star hotel, but the room was spacious with a kitchen and washer and dryer a living and dining area and a bedroom. The bathroom is spacious, but there are no grab bars. I assume they have handicap rooms that are better appointed in that respect. To get in the front entrance you have to climb a dozen steps and to get in the side entrance you have to negotiate a steep driveway. You also have to climb steps to get to the pool. There is a nice workout room and a small computer room on the third floor. We were not able to hook up wirelessly and it´s $7.50 a day to hook into the hotels network. They serve breakfast on the third floor also but it´s not included with the room. That`s an additional $7 or $8.
We walked down the street and passed by several restaurants and found the local grocery store. Picked up fruit and water and packed it back to the hotel. The sidewalks are uneven so I had to be very careful walking and crossing the busy streets is an art to be learned where there are no traffic lights or crosswalks.
I read through the information packet they gave us at the airport. There were a few discrepancies between what my e-mails said I´d be receiving and what the info packet says I`ll be receiving as far as treatment goes. I will have to wait until Monday for clarification. Tomorrow will be a day of rest and perhaps FOX will have the Cowboy game on.
It isn´t a four star hotel, but the room was spacious with a kitchen and washer and dryer a living and dining area and a bedroom. The bathroom is spacious, but there are no grab bars. I assume they have handicap rooms that are better appointed in that respect. To get in the front entrance you have to climb a dozen steps and to get in the side entrance you have to negotiate a steep driveway. You also have to climb steps to get to the pool. There is a nice workout room and a small computer room on the third floor. We were not able to hook up wirelessly and it´s $7.50 a day to hook into the hotels network. They serve breakfast on the third floor also but it´s not included with the room. That`s an additional $7 or $8.
We walked down the street and passed by several restaurants and found the local grocery store. Picked up fruit and water and packed it back to the hotel. The sidewalks are uneven so I had to be very careful walking and crossing the busy streets is an art to be learned where there are no traffic lights or crosswalks.
I read through the information packet they gave us at the airport. There were a few discrepancies between what my e-mails said I´d be receiving and what the info packet says I`ll be receiving as far as treatment goes. I will have to wait until Monday for clarification. Tomorrow will be a day of rest and perhaps FOX will have the Cowboy game on.
Friday, September 11, 2009
In the beginning...
I left Hawaii and arrived in Houston on Thursday to see my Dad who, as I was flying, was undergoing cancer surgery, and on Saturday I leave on the final leg of my journey to Panama. To some it would seem that this is the beginning of my journey, but this journey started many months ago. It has been 10 years since I was diagnosed with MS and the pattern of the disease seemed fairly mild and non-disabling for the first decade - which is a fairly common trait in most relapsing/remitting cases. I modified my lifestyle quite a bit after diagnoses, trying to eat healthier and trying not to get overheated or overstressed, but for the most part I figured that I could go on indefinitely and perhaps was in denial about what the ravages of the disease ultimately leads to. After the 10 year mark the relapsing side of the disease became more dominate and all of a sudden I was hit with the prospects of loosing my mobility. I experienced fear, depression and apathy in strange combinations, for after all, everyone says there is no cure.
It was a combination of an e-mail from a friend with a paper attached that talked about mycoplasma (more on that later) and my husbands practical comment that if he had the disease he would be researching everything he could about it to try to find a cure. He told me we had access to a world of information right on the computer. Being computer illiterate to the point where I didn't even know how to turn one on, I had put off doing that research for almost ten years. In January last year when my symptoms suddenly worsened I was motivated to tackle my aversion of the dreaded black box. It was a new experience and, except for some frustrating moments in the learning curve, not all that unpleasant. It also had the added benefit that I could look up info on the Dallas Cowboys, which I may have mentioned is a casual passion of mine.
My symptoms in the beginning were tingling down my arms and legs and all over my torso, much like a hand or arm will do when it has the circulation cut off from it. These came and went at their own whims. Early on depression hit and I took a regimen of Chinese acupuncture and potions for several months but did not feel any relief. I made the decision early on to steer clear of drugs having learned that they do nothing to combat the cause of a disease, only to mask the symptoms and often, due to side effects, the cure was worse than the disease. A friend of mine told me about Oasis products one day and I signed up, Within a week of taking a combination of their natural supplements the depression was gone and the tingling was reduced considerably. My hands and feet still felt somewhat numb most of the time, but I learned to live with that. The symptoms were fairly consistent and mild until last year around December/January when quite suddenly they ramped up a few notches. The numbness in my right foot progressed up my leg and into my hip. I started getting what's known as foot-drop where my right foot has no muscle control and kind of just flops to the ground when I walk. I have to be careful now or it lands on it's side and the result is a twisted ankle. My right leg and hip aches most of the time and the muscles are in a state of atrophy. My physical therapist says some neurons to the muscles are still firing but not all of them. My left arm is going numb and it's difficult to hold things in my left hand, especially if I'm not looking at it. I'm beginning to get headaches and starting to have vision problems. I still walk albeit with a limp but I can see the writing on the wall. Depression set in again due to the hopless nature of my situation.
In January I made the leap to the computer age and within a couple of weeks I began to see that all was not hopeless and the more I researched the more hopeful I became. I have an admiration for the countless people who take the time to put information on the web. Yes you do have to check and verify many things, but at the core you can learn so much. I will weave bits and pieces of the things I've learned though this blog and provide references for those who wish to delve deeper. I do not desire nor do I have the energy to just put it all down in the next thirty paragraphs and I think it would be fairly boring to most people, so it'll come in bite size pieces as my journey progresses.
One thing I will say at this time is that I don't believe that stem cells for multiple sclerosis patients are a silver bullet. I think the old addage holds true that if you keep doing the same things over and over and expect different results, your living on a river in Egypt... or something like that. From what I have learned, diet plays an important part of recovery and it is my desire to recover and to do everything I can to make that happen. I told my friends that I would eat dog food the rest of my life if that is what it took to get better. My diet is quite a bit better than dog food, but it has changed drastically. For now I will just recommend the "The MS Recovery Diet" by Sawyer & Bachrach to anyone afflicted with MS. The research and results are quite amazing.
In the blink of an eye I will be heading south toward a land of hope and with the prayers and good wishes of many for a possible recovery that I thought impossible when this journey began. My vision of the future is tempered by the unknown but brightened by what I have learned. "My people perish for lack of knowledge." Hsa4:6
It was a combination of an e-mail from a friend with a paper attached that talked about mycoplasma (more on that later) and my husbands practical comment that if he had the disease he would be researching everything he could about it to try to find a cure. He told me we had access to a world of information right on the computer. Being computer illiterate to the point where I didn't even know how to turn one on, I had put off doing that research for almost ten years. In January last year when my symptoms suddenly worsened I was motivated to tackle my aversion of the dreaded black box. It was a new experience and, except for some frustrating moments in the learning curve, not all that unpleasant. It also had the added benefit that I could look up info on the Dallas Cowboys, which I may have mentioned is a casual passion of mine.
My symptoms in the beginning were tingling down my arms and legs and all over my torso, much like a hand or arm will do when it has the circulation cut off from it. These came and went at their own whims. Early on depression hit and I took a regimen of Chinese acupuncture and potions for several months but did not feel any relief. I made the decision early on to steer clear of drugs having learned that they do nothing to combat the cause of a disease, only to mask the symptoms and often, due to side effects, the cure was worse than the disease. A friend of mine told me about Oasis products one day and I signed up, Within a week of taking a combination of their natural supplements the depression was gone and the tingling was reduced considerably. My hands and feet still felt somewhat numb most of the time, but I learned to live with that. The symptoms were fairly consistent and mild until last year around December/January when quite suddenly they ramped up a few notches. The numbness in my right foot progressed up my leg and into my hip. I started getting what's known as foot-drop where my right foot has no muscle control and kind of just flops to the ground when I walk. I have to be careful now or it lands on it's side and the result is a twisted ankle. My right leg and hip aches most of the time and the muscles are in a state of atrophy. My physical therapist says some neurons to the muscles are still firing but not all of them. My left arm is going numb and it's difficult to hold things in my left hand, especially if I'm not looking at it. I'm beginning to get headaches and starting to have vision problems. I still walk albeit with a limp but I can see the writing on the wall. Depression set in again due to the hopless nature of my situation.
In January I made the leap to the computer age and within a couple of weeks I began to see that all was not hopeless and the more I researched the more hopeful I became. I have an admiration for the countless people who take the time to put information on the web. Yes you do have to check and verify many things, but at the core you can learn so much. I will weave bits and pieces of the things I've learned though this blog and provide references for those who wish to delve deeper. I do not desire nor do I have the energy to just put it all down in the next thirty paragraphs and I think it would be fairly boring to most people, so it'll come in bite size pieces as my journey progresses.
One thing I will say at this time is that I don't believe that stem cells for multiple sclerosis patients are a silver bullet. I think the old addage holds true that if you keep doing the same things over and over and expect different results, your living on a river in Egypt... or something like that. From what I have learned, diet plays an important part of recovery and it is my desire to recover and to do everything I can to make that happen. I told my friends that I would eat dog food the rest of my life if that is what it took to get better. My diet is quite a bit better than dog food, but it has changed drastically. For now I will just recommend the "The MS Recovery Diet" by Sawyer & Bachrach to anyone afflicted with MS. The research and results are quite amazing.
In the blink of an eye I will be heading south toward a land of hope and with the prayers and good wishes of many for a possible recovery that I thought impossible when this journey began. My vision of the future is tempered by the unknown but brightened by what I have learned. "My people perish for lack of knowledge." Hsa4:6
Tuesday, September 1, 2009
Golf can help MS
I leave on my journey to Panama in nine days. My research on finding a cure for Multiple Sclerosis has pointed toward stem cell therapy as the best solution to try to repair the damage the disease has done to my central nervous system. The reports coming out of the Panama and Costa Rica clinics have been extremely positive and I'm looking foward to getting through the process and discovering what the results are. The process and the results will be cataloged here as well as the experience of Panama and the treatment of other diseases that I obtain first hand knowledge of. I will also discuss more of my background which may have a bearing on why I contracted MS and other factors that scientist are looking at as a possible causes of the disease.
For now I wish to put out a big thank you to those who have helped make this journey more managable. Last Friday was the first annual Quest for Cure Golf Tournament held at the Mauna Lani Resort. Ipolani Tano was the driving force behind this event and helped organize a very successful tournament. Many of my husband's golfing buddies and poker buddies showed up in support and they all donated generously. Canoe club members from the sport I enjoyed so long ago showed up as volunteers and there was good food and lots of fun. Local businesses contributed to a pool of over $13,000 in prizes that were given away at the tournament. The contributions from this event will help offset almost a third of the cost of the stem cell therapy. Even more than that, the help and generosity of those that participated overwhelms me and lifts my spirit and I'm thankful there are so many caring people willing to help. To all those involved I send out my warmest mahalo nui loa...
For now I wish to put out a big thank you to those who have helped make this journey more managable. Last Friday was the first annual Quest for Cure Golf Tournament held at the Mauna Lani Resort. Ipolani Tano was the driving force behind this event and helped organize a very successful tournament. Many of my husband's golfing buddies and poker buddies showed up in support and they all donated generously. Canoe club members from the sport I enjoyed so long ago showed up as volunteers and there was good food and lots of fun. Local businesses contributed to a pool of over $13,000 in prizes that were given away at the tournament. The contributions from this event will help offset almost a third of the cost of the stem cell therapy. Even more than that, the help and generosity of those that participated overwhelms me and lifts my spirit and I'm thankful there are so many caring people willing to help. To all those involved I send out my warmest mahalo nui loa...
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