Folks, I have a 57 yr old cousin who was diagnosed with PD 2 plus yrs ago. His particular form of PD appears very aggressive, beginning with gait and imbalance issue and quickly increasing to use of a catheter and other issues. He now has difficulty with speech and is constantly beset with tremors, shakes and things related and his family has found it necessary to recently locate him to a nursing home for improved ability to care and provide day to day needs. He is under the supervision of a neruosurgeon at Barnes Hosp in St. L and this surgeon has ruled out the use of Deep Brain Stimulation as a viable treatment protocol citing he has 'non typical' PD. No commentary (that I know of yet) on adult stem cell therapy. I have been poking around the web looking at various stem cell (adult) initiatives. Specifically, I am currently examining three initiatives: Stem Cells for Hope (Dr. Walter Kravchenko); Neuro Generation (Dr. Michel Levesque; and X Cell Center (located in Germany, no contact yet). Question: Does anyone out there have any first hand experience with any of these contacts? Or for that matter the entire spectrum of adult stem cell activities/research with respect to PD as relates to a good bonafide lead? Thanks in advance.

Hi,

I am very sorry to hear of what you and your family, especially your cousin, are going through. I can't directly answer your stem cell questions but would like to suggest some things.

1. The rapid progression is somewhat alarming and some of the motor symptoms like postural instability are rather unusual that early after diagnosis. I think the DBS neuro's comment that your cousin is non-typical PD more than warrants a second opinion. Several other neurodegenerative disorders look like PD early on with tremor and slowness but falling or balance issues as presenting signs may mean it is something else. Has your cousin been diagnosed by a Movement Disorder Specialist (a neurology sub-specialty) and has he been given a trial of levodopa (Sinemet) as drug therapy...if definitively PD, his symptoms should respond somewhat, if not dramatically so, to this drug...if you can't be sure of all this, please seek another opinion.

Differential Diagnosis Information from WeMove.org

In addition to seeking a second opinion, I would also expect that your cousin undergo a PET scan of his brain to measure dopamine levels in his brain- this is further hard proof of PD or something else.

2. Stem Cell treatment is considered an experimental treatment, at best, for us right now. You won't hear commentary because doctors will not usually outwardly support it due to lack of standardized, statistically significant trial results. I have only heard of X Cell and all that we hear is anecdotal. They published a study of results recently showing improvement in many of their PD patients; however, before I would willingly undergo treatment I want to see independent (that is outside of their web page or press release junket) studies published in outside peer reviewed scientific or medical journals.

Hope this helps some ,

Laura

I would re-iterate Laura's suggestion of getting a second opinion. You do not say what treatment has been tried to date. It certainly seems a very fast progression, and while it might seem tempting to try the stem cell route at this time it does not seem to be proven, either in consistency of results or duration of improvement, though there may be others on the forum with more information.

Trying for a clearer diagnosis could help. It is unusual for someone to be so incapacitated early in PD that they need the level of care you describe. Again Laura is spot on in asking whether your cousin has been seen by a Movement Disorder specialist, it makes a huge difference, especially where medication and management of symptoms are concerned, as well as diagnosis. Do not underestimate the importance of finding the right medication regime. If in fact this is PD that you are describing.

If I had a family member who had deteriorated in the way you describe I would want a firmer diagnosis, a good understanding of what medications are and are not doing to improve the condition, and if possible establishing a better quality of life before looking at treatment options that seem mostly to be used when conventional routes have been exhausted.

I wish you and your family the best in finding a route that brings a better outcome for your cousin.

Lindy

Thanks to both of you for responding. My cousins brother forwarded me a sort of 'backgrounder' which I should have included in my initial posting. I will now cut and paste that info right now:

First, the medications xxx is currently using:

Carbidopa/levadopa - Maintenance 3X per day then time release at bedtime. Direct for the Parkison's symptoms
Cymbalta - antidepressant
Remeron - antidepressant
Trazadone - antidepressant

I think that is it. Short description attached here.



Now let me jump around for a little history.
xxx started showing Parkison's like symptoms some 2 to 3 years ago. At that time he was taking Zyprexa.
Look at the following attachment. This drug can produce Parkinson symptoms that sometimes fade with the cessation of their use.
Some evidence though that for folks who are candidates for Parkinson's, that Zyprexa can speed the onset and development.



About a year ago, shortly after Dad's death, xxx was taken to Barnes following what apparently was an attempt to OD at Home.
I think this happened when I was in Germany, because I remember stopping in to see xxx on my return flight.
At Barnes I had some long discussions with xxx and with yyy who was visiting him.
I learned several things from xxx that surprised me. He told me that he had suffered for many years, dating back to his days at MU, with great anxiety and depression.
Call it bipolar or call it whatever, xxx said it affected him so severely that he could not concentrate for any length of time. He said it had plagued him since then and the Zyprexa was probably a result of that.
Away from xxx, yyy confided with me and told me that some years earlier, xxx had told him that he put a rifle to his head and pulled the trigger, but the bullet did not fire.
I have to believe it was true but never asked xxx about it. Particularly as he was undergoing shock therapy (ECP) at that time.
The ECP has pretty much muddled xxx's memory of the last 2 years, whereas his long term memory and immediate memory are fine.

Anyway, telling you these stories is my attempt to give the background for the meds he is taking.
It also worries me regarding clinical trials because I have a vision of people like Levesque (Neuro Gneration) selecting the most probable success patients and xxx is dealing with both severe depression/anxiety and Parkinson's.


That's the backgrounder I have on the situation. Once again, any additional advice you may have is appreciated.

HeavyDuty

Your additional information reveals a far from clear medical background.
I would have to urge you to seek a second opinion on this, especially given the complex nature of the problems described. A very good Movement Disorder specialist is what you should be looking for, preferably someone who can work in tandem with whoever is treating the depression. We are not doctors and cannot unravel things in terms of diagnosis, or help in that process. Any advice we can give is on ways forward for the individual in terms of finding the right kind of help.

With that in mind, and the history you have given I think that something that you might bear in mind is that anti-parkinson medications can sometime give side-effects that are very similar to PD. And as you know so can other medications. This is something that could be discussed with the patients neuro/MDS, by raising it during an appointment. It should not be acted on.

I would not be thinking in terms of introducing new unproven treatments or drug trials, only of getting him the best help to stabilise things.

Lindy

Lindy sums it all up. Please seek an appt. with a Movement Disorder Specialist as soon as you can. No one should even think or utter DBS until there is a more firm diagnosis, and I would reiterate that if there is any inkling of doubt over PD vs. something else, then your cousin should insist on a PET scan imaging of the brain checking for dopamine levels. There are now even PET scans for differentiating between PD and other brain disorders.

Best,

Laura