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Had second opinion at Columbia....

Treatment options....

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#1 Lucille

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Posted 26 October 2012 - 07:23 PM

Hi Dr. Okrun, its Lucille.......

My husband was diagnosed with Parkinson's disease in April , then DATscan proved negative; MD changed diagnosis to Parkinsonian syndrom. We went for a second opinion today at Columbia in nYC , and my husband had a thorough physical. His left side in only affected.

MD ruled out Parkinson's disease no resting tremor and said the working diagnosis is Vascular Parkinson's (based on MRI of moderate white matter disease and he had a basal lucnar stroke ) vs PSP Progressive Supranuclear Palsy or CBD Cortical Basal degeneration....

Its a wait and see, said to stay on Sinemet and he would even increase it. He will send a report to our current neurologist...

Now I am more anxious than ever, especially the PSP....and CBD..because I've read that there is no good treatment and the progression is more rapid...

My husband is not the man he was after quadruple bypass surgery two years ago, and I think that's where his disease was kick-started....it might have been dormant...However, he still goes to the gym three times and week and walk and does puzzles.

Do you know of any research or other options..or is the the dead-end (metaphorically speaking)....What is to become of him? The word progressive has conjured up some very scary scenarios....

!. Do other people on the forum have this?
2. is this called Parkinson's Plus....

Thank you in advance for your advice..


Lucille...

#2 Dr. Okun

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Posted 27 October 2012 - 04:39 PM

I will post this for you. The most important thing to keep in mind is that many medicines may help including antidepressants and also dopaminergics. Also, if it is vascular (from strokes) it may not be progressive. The most important thing is to treat aggressively with meds, PT/OT/Speech and have regular visits with the doc to see if it is progressive. I will post for others to comment.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#3 vipowitz

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Posted 27 October 2012 - 08:29 PM

Having been diagnosed with parkinsonISM by my MDS a year ago, he says that normally he will watch a patient's progresasion for about 3 years prior to making an ISM or idiopathic Parkinson's diagnosis. I also had quadruple bypass 11 years ago and my MDS last year ordered some brain scans which showed a couple of lesions on my brain. He says they were most likely caused during my bypass surgery from possible lack of oxygen to my brain. Anyone else have a similar tale?

#4 Dr. Okun

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Posted 27 October 2012 - 08:46 PM

I have heard this before, but remember vascular Parkinsonism may have a different and less progressive course than neurodegenrative parkinsonism. It is important to be aggressive with trying dopaminergics, antidepressants, and PT/OT/Speech. I have seen too many people not pursue therapies that may be life changing!
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#5 Lucille

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Posted 28 October 2012 - 07:17 AM

Thank you Dr. Okun,
My husband still goes to the gym 3x a week and walks 2 miles on alternate days.....His speech is fine...His balance and gait issue and dyntonia of l. arm is somewhat improved in Sinimet..Our local neurologist was even hesitant to start him on therapy and had us cancel vacation in Sept when my husband intially started meds...I wonder if he will be gun-ho about increasing his meds. We live an hour East of StonyBrook (Long Island)and perhaps if MD wont treat aggressively I will look down there. The Columbia MD suggested increasing dose of Sinimet and he will send a report and one to me.

One thing the Columbia MD said is what I have read.....patients that undergo heart bypass should be made more aware of the collateral damage of such surgeries..Its too late for my husband, but I would like to get that out there...Any suggestions?

Thank you for your advice, and we will pursue therapies...he did say it was a hard call: its more wait and see and that's what local neuro said....I am not a MD, but my husband does not have all the symptoms of PSP...I mentioned that he seemed apathetic...lost interest.....well, he has always been a laid-back guy and I wonder if he is not somewhat depressed with all that has happened...He is also dyslexic..so he has a learning disability which coupled with physicial decline makes me wonder which part is illness and which part is my husband being himself...I tried to explain to neuro at Columbia..but he did not seem to get it.

Thanks again, I do not feel as hopeless and anxious today.

#6 Lucille

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Posted 28 October 2012 - 07:20 AM

reply to Vipowitz..

Its a wait and see.

My husband also had quadtruple bypass 3 years ago, and thats when all his problems started. MRI showed he had a stroke, plus my husband has ischemic white matter disease which indicates what was in his chest is in his head..
but........yes, lack of O2 can cause those little lesions.....I worked in Cardiology for years, as a nurse....

#7 Dr. Okun

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Posted 28 October 2012 - 10:22 AM

Hang in there are stay aggressive with therapies. There are movement docs at Long Island Jewish hospital too.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#8 Lucille

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Posted 02 November 2012 - 04:44 PM

Thanks! The storm had us down; power back...(small blessing, lights!)...I started checking out your suggestion here on Long Island at LIJH....Husband has appt end of Nov with local neuro see what he says, but will go forward with LIJH.....
Someone mentioned gluthione? A vitamin compatible with Sinemet.

Thanks, again,,

Lucille

#9 Dr. Okun

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Posted 02 November 2012 - 05:44 PM

There is no solid scientific evidence that glutathione pills or infusions make PD better, and they are expensive.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#10 vipowitz

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Posted 24 November 2012 - 10:25 PM

Lucille

There is unproven opinion that the antitoxident NAC helps with glutathione levels. I have been taking NAC, 1000 mg x 2 daily for a couple of months now.Can't really tell if it is helping, but i am hopeful. It's not that expensive

#11 Dr. Okun

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Posted 25 November 2012 - 12:12 PM

Thanks for the comment; I am unaware of any scientific evidence supporting its use in the human.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#12 Lucille

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Posted 25 November 2012 - 04:20 PM

Dr Okun I followed your advice and located a movement disorder specialist at LIJH.....appt. (earliest) March. Thank you! I will keep appt with local neuro and ask him to follow Columbia suggestion to increase Sinemet and add antidepressants...(your suggestion).......Columbia has yet to send report, but I will call for it.

I am not an MD but comparing and doing tons of research It very will may be Vascular Parkinson ism..It goes with my husbands overall picture coronary artery disease quad. bypass surgery, basal ganglia stroke. but then again, it makes me feel better......

At any rate I am pursuing all avenues of treatment, I never heard of NAC but will look it up....these are not ordinary time (our retirement, yeah, right) so it calls for agressive therapies.

You have been very helpful.....I was actually thinking of flying to your clinic in Fla until I came up the doc at LIJH.....

Again, thank you,.
Lucille

#13 Dr. Okun

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Posted 25 November 2012 - 07:46 PM

Great news Lucille, keep us posted.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#14 Lucille

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Posted 01 December 2012 - 08:39 AM

Dear Dr. Okun, follow up appointment with local neurologist, He said Columbia MD did a very thorough assessment.. He will follow Columbia MD protocol slowly increasing Sinemet and adding SSRI....He found my husband mildly improved since summer. He is standing straight and his left arm is not hyper-flexed behind his back ..however, he still holds it away from his body. He has had no falls since. His balance is improved somewhat. He is keeping him on a short-leash and seeing him again 1/22/13...He did some hand-holding and seemed genuinely interested is us. He also recommended a PET scan at LIJH down the road.

What are your thoughts on the following:

1. My thought is to stay with local neurologist as he is following Columbia MD protocol increasing Sinemet and adding SSRI and follow up with Columbia (they videotaped husband ) in the spring rather than starting all over at LIJH..
2. Does it matter about food and Sinemet? The Columbia MD said, didn't matter just get them in. Our pharmacist said it didn't matter, yet I've read on the forum it should be taken 1/2 hr. before meal or 1 hour after....

I've finally accepted this disease process is unpredictable at best..and that my husband will never be the same man. I am more at peace and not looking for miracles. Its is what it is, and I am doing everything I can to keep it manageable, for now.

I cannot adequately express my thanks to you and this forum, I am getting an education and knowledge is power. You are doing a good work...

Many thanks, again
Lucille

#15 Dr. Okun

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Posted 01 December 2012 - 11:05 AM

Thanks for the note. If you are comfortable with your local doc and Columbia, that will be plenty of cooks in the kitchen. Make sure they talk and send notes back and forth.

In some cases giving your meds 30-60 minutes head start before you eat helps absorption and helps to be sure that food does not interfere with absorption. This helps some but not all PD patients.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#16 Lucille

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Posted 05 January 2013 - 04:21 PM

Hi Dr. Okun, Happy New Year!

As you and the Columbia MD suggested, my husband is now on Zoloft and I see a definite improvement in mood. The Sinimet is slowly being increased by adding 1/2 tab to his 100/25 tid.....We are in the second week. So he is getting one more pill a day. My local neuro is very conservative, but he is following the Columbia protocol. ( Local neuro did not want to add Zoloft and increase Sinemet at the same time, made sense to me.)

I have observed: Although his left arm in not hyper flexed to the back with that curl/claw fingers he still holds his arm away from his body on the left, but fingers are relaxed. He can straighten his arm if reminded. He had a right lacunar stroke in the basil ganglia during quadruple bypass surgery 2 1/2 yrs. ago. . That is the side that he has weakness in his leg and gait problems: I was wondering:

Could he have had another small stroke last summer when his symptoms increased that did not show up on MRI and this left arm thing part of the collateral damage?

...
Should I be a nag and remind him to straighten his arm?

He still goes to the gym and walks 2miles on non-gym days...However, he is very slow moving..

I truly believe he has Vascular Parkinsonism because it fits with his overall picture: He had 4 vessels occluded the least at 86% Left main descending at 98 % (they said he had the "widow maker plus". Of course, I am not an MD and the dx was between Vascular Parkinsonism and Progressive Supranuclear Palsy......

But whatever it is, its sure changed our lives. We are planning a trip in Feb. and I am worried how he will fare. (Airports, etc.)
My first husband died when I was a much younger...so this is a deja vu..

Thanks, as always, for your sage advice....
Lucille

#17 Dr. Okun

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Posted 05 January 2013 - 07:01 PM

If the arm changes to the posture you describe after taking the sinemet then it is PD related. If it does not change whether on or off medication, it could be PD or another cause like a small stroke.

Regardless of the cause of the PD symptoms you are doing the right think by slowly working up the dose of the antidepressant and also the sine met.

Hope he continues to improve.

Make sure you request wheelchair and airport assistance.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#18 Lucille

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Posted 21 February 2013 - 03:55 PM

Hi Dr. Okun.....

The local neuro stopped the Columbia protocol, (increasing the dose of Siniment) after a month of increasing dose 1/2 tid, he stopped it saying he wasn't sure it was working, but Columbia neuro wanted dose to about 900 mg......then he ordered MRI because he felt husband perhaps was having small strokes (rigidity in left leg and the way he holds his arm.)... .....MRI showed no change from previous MRI ischemic white matter disease....and old stroke..

*****I transferred his care to Long Island Jewish Hospital Cushing's Institute Dr. Guy Schwartz....appt 3/15..meantime he is still on Sinemet 100/25 tid and Zoloft 25mg......Thank you for this suggestion, awhile back...Local neuro nice, but I think he is over his head and does not know what to do and from the get-go he was very leary of Sinimet... ..Driving to to Columbia is a trek through the City on a regular basis is not a good option.

I am confident that perhaps they can slow down the process or do something to help....

I want my husband to be looked at with fresh eyes....I am pretty much anxious about this; as a nurse, I know what may be coming down the pike, and I try to live as normally, as we can. But all athletic things we did (bike riding, kyaking, etc is from another life.) P.S. I was a widow when I married my husband 7 years ago, and three of them since his surgery have been worrying about why he was not improving....and in fact declining.

I will keep you posted, and thank you for your help; As I said in an earlier post, I was willing to fly to your center in Florida.....Exit 33 on the Long Island Expressway....seems a tad easier!

#19 Dr. Okun

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Posted 23 February 2013 - 05:46 PM

Great, keep us posted.

In our center we do not hesitate to keep pushing the dose of sinemet as was recommended at Columbia.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#20 Lucille

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Posted 04 March 2013 - 09:10 AM

Dr Okun,

My husband collapsed yesterday and was out and unresponsive for 12 -14 minutes ambulance took him to local hospital.....he is admitted..They are saying he had a seizure. Is this common in PD the attending neuro was talking about vascular parkinsonism and wanted to know why his sinemet was so low!!! .... It was his partner that reduced it. I am still planning to take him to LIJH Dr. G. Schwartz 3/15.. ....but in the meantime this is another rung to his diagnosis or lack of one......the local neuro said it was a hard call because they both start in Basil ganglia of brain....

Needless to say, I thought he had a V - tach and died,..It was horribly scary

thank you for your help..

Lucille




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