The advanced online April issue of Nature Medicine contains an article that details the possibility that fetal brain stem cells may not help fight off Parkinson’s Disease but the disease may actually transfer from the host’s brain cells to the implanted brain cells. Published online: 06 April 2008; | doi:10.1038/nm1747

http://www.nature.com/nm/journal/vaop/ncurrent/abs/nm1746.html

The article details the history of a woman who received a brain implant of fetal stem cells.  Fifteen years later her autopsy shows that the implanted fetal stem cells developed signs of Parkinson’s Disease.  However, for ten years, this lady showed improvement in her movement and symptoms of Parkinson’s Disease.

Now questions are being raised about the effacy of using fetal stem cells in research for Parkinson’s Disease cures.  These brain cells were harvested from aborted fetuses and implanted in the brain of this particular lady.  This study was conducted by Dr. Thomas Freeman of the University of South Florida in a controversial trial of surgeries performed at the Center of Excellence for Aging and Brain Repair.

Dr. Freeman states, “”We have learned a lot about Parkinson’s itself.  This type of trial is a road map for how to make stem cell therapies, when they become available, even better.”

So, do you believe, as a reader, that we should scrap all stem cell research?  Many of you do believe this.  But do you believe this because of definitive research, or because of emotional and religious beliefs?

Should Salk and Sabine have abandoned their research to find a polio vaccine because of the difficulty Salk encountered in developing the dead injectable vaccine?  Many people contributed to the success of this research and the development of the oral polio vaccine.  There were several false starts and discouraging results after the attenuated live vaccine was shown to be unsuccessful in the 1950s.  Sabine went on to develop the oral polio vaccine after refining the process.  Should this research have been stopped when the first live attenuated vaccine was shown to be a failure?  NO, research should not have been stopped or limited.  These scientists took their research to the next level, working tirelessly to refine and develop the vaccine that would later result in the near-eradication of the devastating disease, polio.

Should we abandon conducting research with fetal stem cells because of these discouraging results?  NO!!  Scientists like Jeffrey H Kordower, Yaping Chu, Robert A Hauser, Thomas B Freeman & C Warren Olanow should continue in their research to find a cure.  Even if their research discovers something that will help PD patients live their lives free of the need for so many drugs, it is worth every minute that they toil in their research.

I commend these scientists and doctors for continuing onward in their quest to find a cure, a prevention, or even a help in management of this disease.  There are so many of us Parkies who are anxiously awaiting the successful discoveries that will improve our lives.  The 58,000 Americans who suffered from polio in 1952 and 1953 would have gladly welcomed the vaccine that slashed the number of the infected to 5,600 in 1957.

Knowing the facts, should we scrap stem cell research?  Absolutely NOT!  I pray for the continued success of Jeffrey H Kordower, Yaping Chu, Robert A Hauser, Thomas B Freeman & C Warren Olanow.   Keep up the great work! 

 

This is day 4 of the I 131 treatment for thyroid cancer.  My mouth tastes like metal….not the kind of “metal mouth” I had when I wore braces.  This is the kind of taste that is metallic and it won’t go away.  Yes, I’ve been sucking on those lemon drops and eating those Starburst sour jelly beans to no avail.

Now it’s the 3rd week without thyroxine causing my body to be in extreme hypothyrodism.  Thyroxine is produced by the thyroid gland, and since I have had the whole durn thing removed, the logical solution is for me to swallow a thyroxine tablet.  Well, that can’t be done when this radioactive iodine is coursing through my veins.  In fact, I am unable to take any until the full body scan is done next week.  The consequences of hypothyrodism are not pretty.

Being overly emotional and depressed is only one symptom, but it’s a big one.  For the last two weeks I have FORCED myself to be pleasant, friendly and bouyant….but yesterday, I couldn’t force anything.  I was angry, frustrated and my emotions were bouncing from the floor to the ceiling in hyperactive patterns.  The most definite consequence was not just the effect on my attitude, but my razor-edged tongue.  Being nasty to the ones I love is in no way how my heart really feels.  Another symptom of hypothyrodism is being fatigued, and boy, do I have that symptom.  I can barely drag my body from the couch to the bed at night opting to fall asleep in the den with the TV blazing.  Those who know me know that’s DEFINITELY a sign of exhaustion and depression since I rarely watch TV.

I pulled weeds in the backyard early yesterday morning, and almost fell over from being so tired.  I pressed through it, but now I’m questioning the wisdom of that since I was so tired and bitchy yesterday and said things I didn’t really mean.

Of course, over the last 3 weeks I’ve been extremely bloated and feel heavy.  That’s the symptoms of a slower than ususal metabolism, where the mind and body really do slow down.  I’m not used to slowing down (as you can read in prior blog entries).  So, being held down is frightening to me…almost like drowning.

Balance is such a sensitive issue with me.  I strive to attain balance in my emotional, physical and spiritual life, in the whole person.  No one told me that I would be off balance THIS much.  Yes, I struggle to keep my physical balance due to the Parkinson’s Disease, but now I’m trapped in a sinking body that feels like it’s being used to dredge the Suez Canal.

Today I’m praying for a little energy and for my emotions to stay steady.  And I’m praying that the ones I love, whom I have offended in a miserable way will forgive me for flailing about in the flood of my emotions while I’m sinking to the bottom of the murky tide and spewing angry words.  I really hate myself right now.  I’m ready to get the old Allie back, and you probably are too.

Stepping into the soft, morning breeze caused memories to be stirred in my mind and heart.  The dark wet clouds moved briskly overhead, hurrying off to the East to make trouble there.  My glimpse of the moon’s sliver before the sun awoke was synchronnized with a deep sigh.  The silver moon usually gives me such peace and calm, and today was no different.  Standing alone in my gown watching the clouds roll by I felt pity for the morning rush hour commuters.  Had they taken the time to breathe in the spring air?  Did they notice the peace and tranquility of the beautiful moon?  As they steered their autos into traffic, did they take note of the billowing clouds heading East?  I doubt it. 

Rushing to school and work is the habit with which we begin our days.  Hurrying to beat the light, squeeze the car into the tightest little space in traffic to get ahead, well, that’s the way we live our lives.  We hurry, we squeeze as much into our 24 hour segment, and then forget to breathe, to observe or to feel.  This condition can be called “the tyranny of the urgent”.  When the urgent isn’t even present in our lives we are programmed to march on to the beat of tyranny in our heads.  Do we walk slowly.  No, rarely have I walked slowly.  Dead set on accomplishing the task at hand, my head is usually down as I plow through my mental to-do list and keep up with the beat of the urgent.

Who gets a second chance?  Who gets to have some fun?  Who gets to sit in a lawn chair and observe the ladybugs devouring the aphids?  Until recently, not I.  And my bet is that you rarely offer yourself that respite either.  Slow down, establish a rhythm, a cadence of breathing deeply while lifting your head and noticing the tender green leaves on the trees.  Wipe your mind clean so that the marching toward your tyranny isn’t automatic.  Give yourself the opportunity to listen to the wind blowing the trees while the birds begin to chirp and welcome the new day.

Instead of gulping down your coffee to dash to the office, sit down.  Breathe deeply and enjoy the taste, enjoy the aroma.  Notice how your muscles relax as you breathe.  Pay attention to your breathing so it is purposeful and nourishing to your lungs and heart.  Pay attention to the pink sky as it blooms for the awakening sun.

Give yourself this little respite.  For just a few minutes leave your troubles at the back doorstep.  Let them slip away for a few minutes and begin your day in thankfulness and joy.  God bless you.

Today I found TechCrunch http://www.techcrunch.com/ ”This is a weblog dedicated to obsessively profiling and reviewing new Internet products and companies. In addition to covering new companies, we profile existing companies that are making an impact (commercial and/or cultural) on the new web space.”

Anyway, Michael Arrington wrote a fine piece about email and the 2433 unread emails he has…and the great opportunity this is for any entrepreneur to create a way for us all to manage what has become unmanagable.  Read it…it makes me long for “the good old days”!  http://www.techcrunch.com/2008/03/23/a-crisis-in-communication/

I received this information today in my local PD group newsletter.  Please pass on as you see fit. Thanks!

Veterans with Parkinson’s DiseaseI ask for your help in getting the following information out to veterans. There is a group called “US Military Veterans with Parkinson’s or US MVP. We are working as a group to get the VA to recognize PD as presumptive to exposure to toxin’s including Agent Orange and also to deployment to Vietnam. The group has 120 members and is growing.  Each of our members has PD.   We have intensely researched the connection of toxins and Parkinson’s.   We are working on support from congressmen and senators. We have congressmen Tim Walz of Minnesota and Bob Filner of California, (chairman of the Veterans Affairs committee) that have indicated they plan to draw up a bill to place Parkinson’s on the presumptive list of diseases caused by Agent Orange. We need each and every veteran who has PD to join us.  Please ask your membership to get the word out to others in your community.  Your help can make a big difference in the lives of Veterans suffering from this disease.To get more information and or to join our group they can contact Steve Fiscus e-mail swfiscus@msn.com or call Steve at 1-612-529-4307 or Alan Oates e-mail oldvet@aol.com or call Alan at 1-540-459-9376. The Group has a wealth of information to pass on to veterans on Agent Orange and Parkinson’s.

Alan B. Oates, 1SG, E-8 US Army Retired

 

So, glowing in the dark isn’t an option yet.  I could be disappointed, but I’m not….imagine how hard it would be to sleep when your body is emitting so much light!

Last night my neighbors stealthily placed sour Starburst jellybeans and a springtime bouquet of daisies on my front doorstep.  Those were cheerful and needed reminders of life when my mouth tastes like metal and I feel “uckie”.  When I opened the door, they were across the street watching me (as they should be since I’m emitting radioactive stuff to anyone within 3 feet of me for the next few days).

Upon opening the front door I also realized that my wildflowers were blooming like crazy in the front flowerbed and more beautiful purple bearded iris were popping open too!  This morning I gazed out the window to enjoy the tender beauty of their petals as the sun was barely opening his eyes. Thank God we have hopeful spring times when we are sad, lonely or just tasting like metallic I 131. 

While the ongoing joke has been about me as the glow-worm, it’s the truth that I am thankful for treatments for cancer.  There are times when I view the diseases I have, and the desperation for cures with humor.  But today, I sit here with the poison coursing through my veins and organs; I’m a little more pensive. I do realize that for many of you swallowing radioactive iodine is as taboo as using stem cells for research in order to find cures for awful diseases.  

I’m sure that in your shoes your decision seems reasonable and right for your bodies and brains.  Thank God I can be different than you. The only difference between your fervency to preserve embryonic stem cells that are frozen and my fervency to see that they are used for research is the basic premise of life itself.  You believe that the cell is actually a person.  I do not.  You believe that using the stem cell is killing a person.  I do not.  You believe that the life of a cell is more precious than the life of mothers, fathers, sisters, brothers, and children who already are alive on this earth suffering from diseases you cannot comprehend.  I do not.  You believe that the life of the cell is more important that the life of someone who has not yet had the opportunity to choose Jesus as their Savior.  I do not. Thank God I don’t have to be you. 

The Lord God gave me a brain with which to make decisions that are right, moral and true to His Word.  No where in my Bible does it say, “Thou shall not kill a cell that is frozen and may be flushed or may not make it to becoming a human person.” 

I’ve become so much more philosophical in my views about stem cell research.  I’m pleased with the progress on every front of using these cells.  It doesn’t matter if they are stem cells from embryos or scraped from the backs of my knees.  I’m grateful for the many men and women who have courage, intelligence and determination to mediate someone’s suffering here on earth.

Meanwhile, I’ll radiate I 131 and support scientific research on all stem cells without hesitation.  It’s satisfying to know that God gives me the privilege and ability to enjoy springtime regardless of what anyone else thinks!

After reading almost every blog on RAI, I decided to go through with it.  So, I swallowed the black, skinny capsule and signed all of the papers.  Fortunately, I haven’t started glowing yet.

The dogs and the cat are huddled outside my bedroom door whining.  They don’t understand why they can’t come in the bedroom to snuggle.  But this is for three days, and then I can have them in the same room, but no snuggling for four days after that. 

It’s a good thing I’m home for this week.  Did you know that if I were to travel at the airport and go into some tunnels or bridges that the radioactive scanners would alert the authorities that I am radioactive?  I have to take this little ID card with me for the next 3 months when I travel.  It states that I’ve been treated with radioactive iodine (just in case I set off any alarms).

Also, I had to stock up on Super Sourheads….so that when I start sucking on them tomorrow it will stimulate my salivary glands to work overtime and then I can flush the RAI out of my system.  I don’t struggle with being alone for 3 days since I spend so much time alone on the road.  But I must say that typing on a keyboard covered with plastic wrap is NOT easy to use.  But I do think it’s easier that trying to type with surgical gloves on.

I just hope this treatment works and I don’t have to do it again.

Tune in tomorrow for “how the glow worm turns”. 

Radioactive iodine….used to kill thyroid cancer that remains in my body will be placed under my tongue tomorrow.  That means I will be in isolation for several days, unable to be near anyone, even my cat and dogs.  My ability to cook will be nil since cooking would mean contaminating utensils and foodstuffs in the kitchen.  So, I’ve begun the preparations for a big pot of miso soup, edamame to be steamed, lots of fluids, sour lemon drops and hard candy.  I even have a stash of surgical gloves to protect my computer keyboard.  This sucks.

I’ve read a lot on the internet thyroid message boards about the good and bad results from RAI treatment.  Seriously, I’m thinking of backing out and just letting nature take its’ course right now.  The lack of any synthroid or thyroid hormone in my body (I have to have as little as possible before the treatment) has made me more fuzzy-headed, exhausted, constipated and emotional than usual.  I’m ready to pop the Synthroid and be back to normal again….or as close to what used to be normal.

This has been an on-going joke with my co-workers, customers and family, that I’ll glow in the dark.  Hence the “glow little glow-worm glimmer, glimmer..”  But I’m actually really scared today.  The surgery was such a fast decision that I didn’t have time to be really scared.  The Parkinson’s Disease is so engrained in my every movement and tremor that I don’t have the energy to be scared about it anymore.  But realizing that I am feeding radioactive material into my body purposely has me terrified.

I think the worst part is that I am facing this alone.  Most of the major events of catastrophe in my life I’ve faced alone.  Really, guys, I’m not usually a whiner, but today I’m just a little disjointed about facing this stuff at all. 

Oh, I know, as a Christian, I never walk alone….I know the hand of Jesus guides me and holds on to me tightly through all eternity.  He always has been the ONLY one I could depend upon.  I do believe those statements and am not being cynical or a wise-ass.  I’ll spare us all the litany of those who have funked out on me in times of crisis, death, sadness and sickness.  Way, way down there in the depth of my heart, I know that Jesus does love me and is sovereign over all of this sickness.  I’m just ready for this body to be a bit healthy for awhile.  I’m ready to live a life that is fairly free from stress and worry and drug manufacturers making promises, and doctors presenting cures.  And most of all, I’m so very, very weary of being so alone all the time when I’m not my most attractive, energetic, productive or helpful.  I’m just tired.

So, I haven’t decided if I’ll keep the appointment tomorrow afternoon to swallow the RAI pill. 

Yeah, I know, “Dr. Cutie Pie” told me that I’d suffer terribly while waiting for this treatment since my thyroid is gone and I would be exhausted.  He was a little more right than doctors usually are.  “Dr. vY” has been treating me for high cholesterol and I’ve taken that damned red yeast rice now (causing soooo much nausea) without ever considering that being hypothyroid is a major contributor to high cholesterol.  Also, “Dr. MSH” has given me the magic happy pills for years commenting on my weight gain, never putting two and two together that I might be between normal ranges in my thyroid levels….but that might not be “my” normal, hence causing depression. And dear, “Dr. Gee whiz” asks me annually if my skin is dry and if I’m still suffering from those damned hot flashes.  Well, the answer has been YES for over 10 years….why can’t you think outside the box and consider than the damned thyroid wasn’t working?  That’s what I get for being so conscientious medically.  I’ve been such a good little girl, always following all of the instructions, doing exactly what I was told.  I’ve trusted the medical/pharmaceutical establishment and where has it gotten me?  Two back surgeries, a hysterectomy, two carpal tunnel surgeries, two sagging eyelid surgeries (these were NOT elective), two thyroidectomies, a tonsillectomy, two sinus surgeries, a knee surgery, a diagnosis of Parkinson’s Disease and now swallowing a radioactive pill (that will have consequences in the future of which no one is really sure), and a partridge in a pear tree…no, no, no, I mean I’m hoping to face it cancer free!

So, this will be continued, either as my blog or as a video on You Tube where I’m actually glowing and glimmering while dancing in the dark!

Yippee skippy!  I finally finished the eyelash scarf I knitted for my niece.  I’ll mail it to her tomorrow before going to the radiology clinic.  Here is it!  Let me know if you’d like any tips!

The last three days I’ve been in the Virginia Beach, VA area for my job.  Actually, all I did was work and stay in my hotel room reading.  Rather than going out for dinner I went to the grocery store to get low fat/low calorie “steamers”.  They are nutritious, quite a lot of food for a frozen dinner, and very tasty.

Anyway, while on this trip I remembered to eat lunch everyday.  It’s funny how people react when you don’t know them and you watch them. I am continually amazed at the way some of these spouses are verbally abusive to one another in public.  It made me very sad.

I used to be self-conscious about eating alone in a restaurant.  I’ve gotten over that now.  Remembering to eat lunch is something most people don’t struggle to do.  However, I’ve skipped lunch for so many years that I have to purposely remind myself to do it. 

In fact, it was quite enjoyable.  I read the forthcoming book, Monster of Florence, A True Story by Douglas Preston with Mario Spezi, and watched all of the people eating in the Panera Bread shop with me.  As a side note, this book is fabulous.  I hope you go and buy it when it’s released in June, 2008.  I’m not usually a “crime” novel kind of gal…but I received the advance reading copy, and I haven’t been able to put it down.  Oh, the webs men weave…… 

The cover of the book shows the sculpture by

GIOVANNI DA BOLOGNA
Rape of the Sabines

Anyway, I noticed that lots of people read the newspaper, but only one other man was reading a book.  That’s a sad commentary on our society….not many people read books in public places anymore.

So, in addition to nutrition, lunch time is educational and fun.  Perhaps that will entice me to eat lunch regularly!