Site Visitors
provided by web design company .
In Memory of Susan
It is with great sorrow to inform you that our beloved mother and friend Susan Tarlton passed away peacefully in her home in Hickory NC on Thursday morning January 22nd. In recent months she greatly missed posting her personal accounts and successes with her ALS treatments as well as reading all of your good wishes. Regrettably, her admirable fight ended on Thursday January 22nd quietly in her sleep. Susan’s daughter Lisa and daughter-in-law Sue were by her side. And although we miss her terribly and her passing was somewhat unexpected, we are grateful that she can now ...<< MORE >>
A 'SueSea' Summer!
Hello Friends,
The summer of '08 is wonderful and fun. I bought a new little pontoon boat in June and it is such a pleasure for everyone. Her name is SueSea She is a G3 188C with a 60HP 4 stroke motor (Yamaha) My favorite time on the water is in the evening just as it begins to cool down. Margaret, my caregiver, had never been on a boat before and what a trooper she is! She is now the official "skipper" of SueSea, and we just sort of ...<< MORE >>
The Latest on Me
It was mentioned on PLM (a forum for people with ALS) that I didn't update very often "ahem". This entry will most certainly be directed more to them than to you - my close personal friends and those of you who are thoughtful enough to keep me on your prayer lists.
My arms are still noodles and my same fingers which didn't work, still don't work. The Mic-key feeding tube is certainly a lifesaver and keeps me well nourished since actually eating a meal takes so long. At my front door is a bright yellow and red DO NOT ...<< MORE >>
"What to do with Mama"
Saturday April 19th
Thank goodness last week is over. My children called a family meeting to make sure my "affairs" are in order and
I can afford to have this disease. We met with lawyers, accountants, and brokers, changing and tweaking, trying to ensure Horace has adequate help and relief as I progress. My care team has grown from two to three.
I still resist transferring my assets in order to qualify for government help. I am just the wrong generation.
I hate poverty more than ALS I guess. Our healthcare system is definitely broken and needs fixing desperately.
Learning how to use the ...<< MORE >>
Another Spring in NC
Hello Friends
I just had another phone consultation with the head nurse at Eden. They call and email me regularly to keep up with my progress (or progression). This time Margaret and Horace participated and we all felt it was good news compared to my condition last August. I had stopped the neutraceuticals some time back and my current few seem to work well with my body and condition. The doctor will discuss this and decide if I need to add or subtract anything. The consensus at the time seems to be that all is well. I go to Wake ...<< MORE >>
Happy Easter
Just a quick update, because I feel so guilty for the delay. Many thanks for the wonderful Easter greetings. I hope you all had a lovely holiday. Horace has been in Iceland visiting grandchildren for two weeks and I have gotten along well with the help of my children who divided the time among themselves and my wonderful caregiver Margaret. We realized that we need to tweek Margaret’s schedule some and hire a part time caregiver to fill in as I progress. Hopefully, I will continue slow progression, but with ALS we never know. As for now, my ...<< MORE >>
Hello Again from Belize!
Thursday, March 7, 2008
This was a very unique trip for me. My daughter-in law,
Sue, went with me and stayed at the little hotel next door (about 1/2 mile) so
she could walk. Also my (PALS) roomy's daughter and sister, were there.
They became good friends and all of them fell in love with the sweet people of Belize.
This was a total booster session, and most everyone there was ALS and MS.
MS seems to be more controllable than ALS, as many of them see more positive,
longlasting results than we do. AIDS and diabetes are actually "cured".
Belize Bound
Hi friends,
I apologize for so long between posts, but wanted to check in with you to let you know that I am going back to Belize for another booster of stem cells. My daughter-in-law, Sue Tarlton is going with me this trip.
This is the final booster before Eden moves to the new location, about 8 miles away, still on the water, just larger.
My basic condition remains almost the same, I think. Seems like my neck is a little weaker and my hands more sluggish, but those close to me seem to think I am much improved. ...<< MORE >>
GOOD DAYS and HAPPY NEW YEAR
Hello Friends,
I am feeling good these days and focusing on nurturing my stem cells. I have been asked from many of my PALS friends (persons with als) what kind of drug protocol I am on and am glad to share. Just recently, since the Italian Lithium study was released, I have conferred with my doctors and started taking it on Friday. Currently I take Nexium, COQ10, R(+) pramipexole, Melatonin, all daily, and B12 injections every other day. I try to live as organic as conveniently possible.
The Eden protocol prefers lithium orotate to carbonate, and since I ...<< MORE >>
What a CHRISTMAS It has Been!
Also, after reading my PAL friend’s blog (capantages.blogspot.com) I should feel very guilty about having the best, most obscene Christmas ever. Everyone was home and we celebrated nonstop for days. One of the cousins had the kindness to give a thoughtful book to everyone and a note saying that a donation had been made in their name to the Darfur relief fund. So at least one of us did the right thing. I should recover just in time to bring in 2008 with old, dear friends.
May the New Year bring blessings and joy to each ...<< MORE >>
Merry Christmas to All
December 17th
To all of my cheering section, I have been remiss in posting and I am so sorry if you have been concerned. I continue to be doing well as my physical progression downward has been virtually stopped in its tracks. There is noticeable improvement in a few internal areas, too. I had a note from someone stating the FVC improvement was 3%, which isn’t quite right. My ...<< MORE >>
To the GARDEN of EDEN and BACK - Home Sweet Home
I know most of you are curious about my condition and progression. I wanted to get home and settled in before posting. Since everything has been looking so good. I really wanted to get over the "down slide" before I spoke of my improvements. This booster trip included 3 IV implants and another bone marrow implant. So now I have bllions and billions of hESC swimming around. The funniest thing that happened was the hair on my legs grew overnight and almost looked like fur! Also, about 8 long black hairs grew on my face. Needless to say, ...<< MORE >>
Back in EDEN...
SATURDAY Nov. 10th
My dear friend Carol and I arrived back in Eden. It was a much better trip coming direct too. I was not nearly as tired and we checked into the Casa Blana which is directly on the Caribbean sea. It has a beautiful view and is very peaceful. My appetite was great too. I ate more than I have in awhile and I slept like a baby the first night. Sunday, Carol and I relaxed and just lounged around the room which is not too bad due to the view and ...<< MORE >>
Birthday Surprises!
To all my family and friends who remembered my birthday with beautiful flowers, cards and delicious food, my eternal gratitude. (Even though this birthday was one I had planned to pass!!). I had a big surprise the end of the week to return to Wake for the installation of my new low profile Mic-Key feeding tube. This is just a 'button' which interferes with nothing, and I can get on with my life.
Since surprises never cease, the phone rang Friday afternoon for me to return to Eden for my first 're-celling' treatment. Only problem is that we must be ...<< MORE >>
CLEARER DAYS AHEAD
I am sorry last week's post was so spacey but I seemed to be in the blue funk and unable to think coherently. Four hospital days in what appeared to be a four star hotel certainly made the confusion easier to deal with. A world class neurologist and staff kept me safe and offered my family (thank goodness for a daughter who is a little bulldog) and me all available choices. My stoma has healed, no anesthesia just valium and a local on my skin. Normally, this type of radiology is ...<< MORE >>
BACK on TRACK
New Opportunities
Major Decision Made
My trip to the ALS clinic at Wake really opened my eyes to the precarious situation I have put my new stem cells in. My weigh has dropped to 101 and although my new muscles are still holding on, the protocol continues to nauseate me. After several conversations with Dr Ghen, we have decided to go ahead with a PEG. I plan to gain 10 lbs this week if possible and have the tube placed next Tues. I continue to have daily massage, physio, and exercise . So I hope I haven’t done ...<< MORE >>
STATE of MIND
September 17, 2007
What a disappontment! This post was ready to go and my dragging knuckles kicked it out. So here I go again. I have decided that my Permobile (power chair) is a state of mind so it is now in storage - having been replaced with a leather executive chair. Seems to suit the "new me" better. My right arm is continuing to slowly gain strength and the left arm looks more muscular too (wishful thinking??). The Eden protocol is very difficult for my system it ...<< MORE >>
Successes Big and Small
The Watched Pot
GREAT THINGS HAPPENING....
ANNOUNCEMENT
I have had some strange things happen and don’t really know how to write it up and express my feelings about this. Surprisingly, it seems that some PALS ( persons with ALS) are very negative and rude. Some PALS have accused me of scamming and accepting payment for my testimony. This not only hurts very much but is very disheartening. Because of this, I am resigning from the ALS FORUM, SIGMA CHAT, and the Google group LIVING WITH ALS. Some have even vilified the very person who is saving my life. I am just amazed at the ...<< MORE >>
RED LETTER DAY!
Hello Everyone,
Yesterday was a red letter day! I really felt great and ate 3 meals, 3 snacks, and took all my nutrients. WOW….Today still brings better swallowing and chewing. Fingers are more relaxed (even my typing is better), but hoping against all hope that my arm muscles will be next (or first). I go back to clinic on the 17th, so if anything measurable happens by then, I can post it here. Daughter MJ has been here all week to keep us organized with the meds, and organic foods. It helps to have ...<< MORE >>
Day by Day...
Hello All,
I have heard from the Ghens and the roads to
Home Sweet Home!
Hello everyone - My trip home seemed endless. Respiratory problems and a malfunctioning diaphragm make the simplest tasks more difficult, but Lisa and
Hurricane? What Hurricane....One More More Great Day and then we fly...
Hello all. Still here - watching the weather - but the exciting news is that I get one more stem cell treatment before we have to leave. Dr. Nancy labeled this last IV of stemcells 'Susie's swimmers' and I have already taken the prep nutrients. We will start in a few minutes. More later.
It is now later...The storm is coming right this way and we are planning to leave in the morning! I am already speaking more clearly, chewing without as much angst, and my left hand has gone from being able to push 0 lbs, to 5 lbs! I ...<< MORE >>
Red Letter Day! ...But Hurricane Coming!
Hi again everyone! Today is a red letter day..I woke up and started on the trampoline, then had fruit for breakfast . THERE IS A HURRICANE coming so there has just been a change of plans. Instead of a day off today we are running another transplant now . and a final transplant tomorrow . The hosp is making arrangements to get us out of here on Fri pm OR Sat AM. Lisa is staying an extra day and they have cancelled plans for MJ and Vernon.. Depending on bloodwork we will return in Dec. More later.
HUGS, Susan
Susan Here....!
Better Days!
Hello Everyone -
Well it looks like mom is fast improving and the actual stem cell treatment has begun. Not many details to report this minute but we will report back soon!
Love,
The kids
Susan's Challenge
Hello dear friends,
Susan's children here giving you a brief update on mom's progress here at Eden. We will give more details for you in the coming days when we can of course. We know many of you are wondering how she is doing. For now, this has been a tough initial week for mom. During the preparation for the actual stem cell treatment, the body must be literally 'detoxed' to help prepare for the infusion of stem cells. This is what stem cells need to thrive. It is very important of course and mom has had a tough time of it. ...<< MORE >>