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Topic Stem Cell Treatment for Parkinson's Disease Go to previous topic Go to next topic Go to higher level

By dkleinert On 2014.12.06 00:57
Many of you who have been on this forum for the last 10 years have seen me post here, a LOT at the beginning of my husband PD journey. My husband Joe of 33 years was diagnosed with PD 10 years ago. He is now 73 years old. If it were not for this Forum, I KNOW I could never have navigated the scary waters of PD. You literally saved my sanity and life. I know that sounds dramatic, however, it is so very true, and to all of you who have been here a long time, I will always owe you soooo much. I love so many of you dearly for all of the advice, love and concern you have shown me over the years.

In July of this year a dear, long-time friend of mine told me she HAD to see me immediately. We have known each other 20 years. She had recently decided to renew her massage therapists license (in my state a massage therapist has to be licensed). She needed a reference. She called on her mentor and professor, Carolyn. Carolyn and Lisa had not spoken to each other in about 12 years because Lisa quit work when her children were born. Carolyn said "You don't know what has happened to me in the last couple of years.". Lisa, said no, she didn't because Carolyn sounded totally normal. Carolyn said "I HAD Parkinson's Plus Disease, and I was near death. I was unable to walk, could not long speak because I could only stutter out words that no one could understand, I couldn't feed myself anymore, and I could barely breath, and my tremors and sudden jerking made it too embarrassing for me to go anywhere other than home and the doctor. Then I found out about Stem Cell of America in California. Because it is an illegal treatment in the US, I had to go to Mexico for the treatment. I am here to tell you that 1 1/2 years later, I am symptom free. There is nothing I can't do now. I just won a seniors golf tournament last weekend. I just played a piano concert at my church, I drive everywhere I want to go and feel great! It worked".
Then Lisa told Carolyn about my husband. Carolyn told her to tell me to contact her.
I did. A long story short - Joe had the treatment 2 weeks ago today. Here are the changes we have seen so far - even though the doctor told us not to expect any significant changes for 3-6 months:
1. Joe had to move back to glasses he wore 5 years ago - the ones without prisms to be able to see. Totally a miracle because the eye doctor had just told him before he had the treatment that she could not make them any stronger, and he was having so much trouble seeing anything.....nothing was working....he was fearing blindness.
2. Joe no longer has the "Mask of Parkinson;s". We saw that happen he day of the treatment. It was amazing. Prior to the treatment his right eyelid drooped so badly that it seemed to be closed all the time and the left one drooped to almost 1/2 shut. Since the day of the treatment, both eyes are wide open - it is amazing to see. Amazing to see him smiling all the time.
3. His walking has much improved. He still has a long ways to go to be totally stable, however, he says he no longer feels weak when he stands and is no longer dizzy. He had fallen about once every day or two before we went for the treatment. He has not fallen even one time.
4. His breathing has amazingly improved. Joe used to have to breath so deeply all the time you could hear him loudly breathing through his nostrils. No more. He does not even snore at night. Totally amazing.
5. His dexterity is much improved. He used to get so confused when taking off his shirt, putting on his pants, putting on his shirt - he couldn't figure out where the arm holes were, and I had to help him dress. No more. He dresses himself, and quickly. He has not asked for help since treatment.
6. His voice. Oh, my gosh. There has not been a day in the last 7-8 years that I didn't say several times "say it again Joe, I could not hear you", and on the cellphone, it was impossible to understand him at all. Now, his voice is booming and beautiful and deep as it used to be. I have not had to ask him to repeat himself even one time since the treatment. We both laughed about that today!
7. We had not put up a Christmas Tree in many years because Joe used to be the decorator - he used to pride himself on doing the decorating. When he could no longer do it, he didn't want it in the house, so we just didn't do it. Last Sunday I said "Can I buy a small 4 foot Christmas Tree?" He said - yes - let's get one. So we went to Target to buy some small size ornaments and a string of small lights. The next day I brought home the tree, and the next night when I came home he surprised me with all of the lights expertly strung on the tree and it was twinkling in greeting when I walked in the door. I broke down crying. It was beyond my comprehension that he could do that. Truly amazing!!!

There are lots of other things like he is so much more alert and interested in everything again, wants to talk with me, crack jokes and tease me.....and this has only been 2 weeks.

I know the treatment is controversial because they are neuronal fetal stem cells, and it is a very expensive treatment and not covered by insurance. We thought we had nothing to lose except the money because Joe was at the end of his disease. If it were not for Carolyn and all she has told and shared with us, we would not have done it. When we were at the hospital in Mexico we saw people with all kinds of diseases and health problems there the day we were there. It is a beautiful hospital and the staff were wonderful. We heard from people who have family members who have had their diseases reversed and come to help those of us who are new to this treatment. They do it out of love for what is happening there.

P.S. Joe's Neurologist wants to see him in a couple of months to evaluate his progress and told us that he would be happy to help with weaning Joe off of his meds if the treatment works. He said he could not promote or endorse the treatment, but would be there for us if it did.

If any of you want further information from me, please do not hesitate to contact me. I wish every PD patient could have this treatment. I truly do. I love all of you and truly understand what you are going thru. We have the hope of Joe driving again, working in his wood shop, and doing all the things he used to love. We believe it is coming now. It is amazing to have hope now because we did not ever have it before.

By ResistanceFutil On 2014.12.06 08:27
Oh, if only 2 anecdotes equalled a double-blind controlled study! Take your story to the FDA to demand such a study, not to a place where possibly desperate people seeking a cure can be misguided.

By carman96 On 2014.12.06 14:41
I'm glad your husband seems to be better and hope it lasts. Let us know how it is going.
Just this morning I saw something on the news about doctors that do stem cell treatments and charge thousands of dollars. They were using the people's own stem cells. Some of these doctors might just be taken taking your money with no results. So just make sure you do your research.

By Lynnie2 On 2014.12.06 18:49
That sounds unbelievable that things could be reverse so quickly.
It would be wonderful if everyone could have that treatment.
I hope it continues for you and things work out in the long run.
I just wonder why it is so expensive and why it isn't legal in the states.

By dkleinert On 2014.12.08 00:06
They did not use my husbands stem cells. I was able to observe and saw everything that was done. We are not imagining this. I knew most if not all here would be skeptical and scoff at this, however I love this forum and wanted to at least pass the information on.

By JulieB On 2014.12.08 09:16
I might be a little skeptical, but I am not scoffing -- I am THRILLED for you and your husband! If this has worked, then we all rejoice for and with you. (I think if someone told me that feeding Michael eight grapes a day at 3:37 a.m. would heal him or give him a reduction of his symptoms, I would try it.)

May your husband's improvement continue by the day, and I'm looking forward to hearing more about how he's doing! xoxo

By makrivah On 2014.12.08 21:03
Please keep posting! Today's "it's impossible", is tomorrow's "ordinary." I am thrilled that your PWP is thriving. Keep sharing the news. When the time comes, we may choose your same path. Hope comes in many forms. God bless.

By Trusting On 2014.12.09 09:51
How Awesome! May I ask how to look into such a treatment and the cost? I hope the USA could let this treatment come here. Blessings to you and him.

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