I read all of your blog posts and found your experiences truly fascinating. I also have PD in my family.

Observing the decline and passing of those very close to you who had the monster creates a unique mindset of determination to explore and search every source to discover the best path for oneself and all other PWP.

Please continue reporting your journey on this forum.

Robert

Thanks Robert and Girija for the support.

@Girija - you will find the details on the blog; if i have missed anything please ask

@Robert - the first thing that flashed through my mind when I was diagnosed was the picture of my Grandad. I am very determined not to end up in the same positiion.

Andrew

I apologise .
I did hurt you by questionning the authenticity of your blog.
but I did read heartbreaking stories from people getting treated at Xcell center with none positive results.
And I sincerely hope your cell treatment will improve your health and condition,it would give hope to so many of us,me included

please,please keep on blogging

kind regards to you & your family

I apoligise. for causing offence.

This disease is "blinkin" hard on everyone; carers and sufferers alike. When I first was diagnosed with this disease I read a lot and tried a lot. Reduce sugar intake, CO Q10.... A lot of false dawns where I thought things were better but they were not.

I fully understand anybody questioning information available; there is an awful lot out there that is not qualified.

Perhaps it would be helpful if other PWP start blogs of their experiences with a chose "remedy"?

A small vicotry - Last night we went out for a meal and I drove there and back. I have not done that for a long time.......another false dawn, lets wait and see.

Andrew

for understanding our concerns! and for your courage to have the operation which you knew that it may or may not help!
I feel like a drowning man who is reaching for a straw to save himself !! so I want to believe that some thing will work but I want to hold to some thing more substantial than a straw!
You are a Pioneer! your blog will be followed with great interest.
I wish some body will convince M Fox to set up a group of experts to asses the German Stem center work..

Wish you best health Andrew

Imad

Andrew,

A warm welcome to our forum. I am glad to see you not shy away away from any sort of criticism for doing what you believe is right for you; you are courageous in undergoing treatment in the first place...you should certainly not have to defend your choice. I think the criticism leveled at you, while certainly not fair, comes from a place of fear and frustration. Fear in the sense that you do not shy away from that dark, lonely, isolated void where we end up from time to time in recognizing the gravity of our circumstances. Fear in the sense that we are so in need of new treatments, hope that we distrust any alternative paths. Frustration in the sense that there is little we can do to stop any of this. Frustratoin in the sense that no one really seems to care that we are living here and now, we hold answers to better understanding this disease, but no one wants to ask any questions. I think the criticism is misguided skepticism toward Xcell.

It's odd to me that we readily dismiss what could really be a viable treatment because it is unsubstantiated. I suspect that means others want to see it in clinical trials before accepting it as valid. However, here in the States the clilnical trial largely means nothing, in the end analysis other than perhaps establishing safety. We can't even scientifically diagnose or confirm baseline measurement of disease staging and progression through PET scan or biochemical testing; we use a numeric rating scale and an obsever. How in the world can we even be certain that our trial participants are truly at the same course in the disease? In other words, we have no reliability or validity at the starting gate.

All of our research seems, to me at least, to be little more than a house of cards. I too have questioned the legitimacy of the stem cell treatment, but not due to lack of trial data, I would be pleased with independent sources which gather data, analyze, perhaps compare patient outcomes, and report- I don't think we need the "rigor" of clinical trials to see for ourselves whether something is working or not.

Best wishes to you in seeing continued improvement. I am a young onset PWP who is mom to a one year old. I fully understand your urgency.

Laura

Laura, your description of where we are as PWPs is brilliant.
My best wishes go to you and your family

Laura,
Thanks for expressing your thoughts so well. Thats how I felt when I first posted in response to Andrew's mail, but didnot want to give reasons for others statements, just wanted to say Hi and welcome Andrew. You are absolutely right, given the rate of failures of new treatments, it is hard to believe that something actually works.

I was/am very skeptical about stem cell treatments at least the way they were done earlier. Science as we know now states that bone marrow stem cells dont differentiate into neuronal cells, but support their growth. Mesenchymal cells on the other hand do differentiate into neuronal cells. May be this combination of mesen+stem cells given to a person in early stages of PD when at least some neurons are still functional is the best treatment for YOPD. Of course the next question is how long these cells stay active and alive. One would hope, changes in life style, healthy diet, exercise, keeping inflammation and stress down etc would prolong the life of neuronal cells. I do see a light at the end of the tunnel....

I, like many others have been following Stem cell therapies with great interest both for personal and professional reasons. One other success story I heard was from India. A couple of people with PD who underwent similar stem cell therapies (and benefited as per the hospital) have chosen not to go public for personal reasons. Needless to say that had added to doubts about the treatment.
Andrew, thanks for sharing your positive experiences with others. I hope you continue to get better and keep posting. I hope others who benefited from stem cells share their experiences as well.



Girija

... I sit here today and
1) I have stabilised on my drugs ie my decline has stopped
2) The rigidity in my neck is virtually gone
3) I have much much more energy
4) I started to catch smells yesterday

Will it last - dont know/probably not
Am i cured - no
Are my symptoms completely gone - no
Is this all a placebo effect - i dont care!!

Why am I posting this - IMHO the broadbrush treatment I received has done something - so there is hope that targeted treatment will give us all a better quality if life.


...and just maybe we should start canvassing our health authorities to provide this kind of treatment acknowledging that the risk is ours to take???