My walk (stumble) through PD
 

Thi s is for those of you new to PD so that you may avoid some of my errors.

I was dx;d in Sept. 1995 and spent a year in shock amd wallowing in self pity. I was 44. That year I also lst twso beloved pets, had a fiancee bolt and my enploer closed hus business. Not a good year! I stared on sinemet and tried a few other meds, but oncw I got to the correct dose sinemet was all I needed.

After a 4 month job search, I landed a great, but demanding postion with an organiztion that provided excellent health insurance and disability. During the time therei contined to board & ride my two Arabian horses. On weekends I cleaned & managed the stable. When Mirapex came out I tarted takimg it and it helped trmendously. The PD slowly progressed.

In 2003 I retired on disability. In 2004 I sold my home and bought a small farm in TN. It rejuvenated me. I shocked the neighbors with my ability to renovate both house & barn, and landscape.

While living in MD I had been treated by a neuro at Hopkins. Shortly before my move she was hurt in an accident and quit. I started to see a fine MDS at Vandy. In the winter of 2005 I started to have difficlty sleeping. In December 2005 my neuro gave me a script for Sinemet CR. it worked well until late in the Spring of 2006. I bgan to have severe burning sensations in my right hand and dyskenisa.

Mother's Day 2006 I was so bad that in the middle of the night I was taken to the local ER. There is was treated as a criminal, retrained, left lying naked, ad eventually straight jacketed and scheduled to be transported to a mental institution for the criminaly insane. A friend intervened and had me transferred to ICU. It was determined that the CR had built up and I was overdosed. The neuro who saw me in iCU became my new neuro.

Although I tried to continue on at the pace prior to the ER experience,it became more difficult. Fially in January 2007my neurotoldthaat due to the PTS of the ER expeerience the window for me to have DBS was closing.

On April 4.2007 I had Bilateral STN DBS at Hopkins. Initial programming was exactly one month later. I waslked out a new person. Three weeks later I had a major meltdown. I was unable to walk or talk, severe dyskenesia and double vision.

I flew back to Baltimore for more prgramming. Again very sucessful. Until August and then another meltdown. Flew back to Hopkins and was made right again.

On New Years eve I had the worst meltdown ever. The programmer at Hopkins was out of the country. My local neuro was on the west coast. I sat for 2 hours t a local walk in clinic to be told that I needed to goto an ER 30 miles away. Friends took me there. There ws no neuro on call, but the doctor there tried to find one at Vandy and at medtronics. No luck. I spent the next few days very uncomfortable. Finally, on 1.4 2008 I flew back to Hopkins.After working with me for 20 minutes he was able to correct the problems on my right, butsaid that the PD had progressed too far on the left. (I just received the bill for this yesterday $963.00) Afew days after arriving home I had lost all feeling on the right and speech slurrred. Friends thought I'd had a stroke. Back to the ER 30 miles away for a ct scan. They gave me some sort of anestisa and I reacted with worse dyskensia & inability to speak.
CT scan showed no stroke.

The end of January I drove to Hopkins and was reprogrammed by a different prgrammer. Again, sucessfully. It held this time for two weeks. This time tremor was so bad I could not type or dial the phone. A neighbor came over and called neuro. He told her to use the hand held and ramp the voltage down. Because I was shaking so bad the wrong button was pressed and the shok put me down on the floor unable to speak. Whe the neighbor called back she was told not to call him again.

Frineds contacted the surgeon who did the DBS,he gathered the whole group including both programmers and th medtronics rep. A MRI was done and they still can't figure out a solution.

The impact of all this is that I must now find homes for my horses, sell my farm which i have mortgaged in order to pay medical expenses and for drugs.
Did I mention that I have $1,000.00 worh of one drug that I cannot take?

The moral here is that for a very long time I thought I could beat PD. I was wrong.

dear McCane,
I am sorry that the PD monster has taken so much quality life from our lives,
and even so I am thankful each day for even being able to do something small
like for many -typing on the net - easy... well try that when tremors
have the mouse in thetremoring hand -clicking things you never ment to click -
or erasing entire posts -
dear M, Hope is still there, just not health of the body, yet
the health of the Spirit is clearer and we have been humbled
and soul is tired, - & we have come to certain realisations
that doctor's practice medicine and they do not heal the body the body
heals the body...
do not lose hope...
:hug:

MKane ...
 

I don't know what to say, if nothing else this proves the power of a forum like BT2 to enable real communication between peers, not just the exchanging of information, (however valuable).

Your post moved me and I can only send you best wishes, you have to continue the fight, for there is no alternative that I know of. Keep strong, keep hope and remember that you are not alone.

Good luck,
Neil.

Dear Mary,
 

We are still all here for you in any way we can be. I am thankful for the support and help you have received from friends. It is no secret that Parkinson's is a nightmare disease for all of us. The sense of helplessness that can descend on us in times like those you are experiencing is even more corrosive than the progressing physical symptoms.

I'm convinced that our true self, our spirit, can survive and thrive with God's help. Please, hold on to faith in whatever ultimate reality you believe in. If necessary, reach out to anyone you can whose belief you respect and lean on their faith. We are made to live in community in both good times and bad.
PM me if you wish.

Robert

Dear Mary...
 

I remember when you first posted on the "old" forum. You had such a strong independant attitude, like nothing could get you down. You were ecstatic about your new found freedom with your country home and your beloved horses. This much of you will always be here, in the minds of those who care about those here. It pains me to read about your present condition. It makes me realize that all my problems are but a trifle compared to those of others. Your spirit is intact, but your mind and body are crying out for help; help that you are unsure you will receive. I doubt that there is anything that any one of us could say that would help you to fix your DBS, but i believe taht there are many of us sincerely praying that somehow, somewhere there is someone who can "fix" the damage that the DBS has done to you.
Your "Case" is why I don't get a DBS. In my heart and mind , I have dire warning bells that the same thing that is happening to you , will happen to me, if I attempt to have a DBS. I would rather go on with life as it is, getting a good day out of every three or four, than be at the mercy of no guarantees.
This is from one fellow who will remember your words and you forever. You have helped me in thinking that i am making the right descision in spite of those around me telling me otherwise. Thank you for revealing what is happening to you in your post. It may be cold comfort, but you may have saved some of us from what is happening to you. I will pray that you get the help that you need. cs

Mary..Im am sorry to hear of all youve been going through..You were doing so good a couple of years ago, then it seems that the rug got pulled out from under you..You have been such an inspiration to me to keep fighting, and I have been..I hope you continue to fight as well..My prayers go out to you :hug:

MK
 

Why the risk of DBS is downplayed has to be money. It's a huge risk. I can see it if you must do something. But they recommend them when you are young. Thanks for telling your story - you have had a real bad time of it the last couple of years. It's not easy to admit to hardships. There may be readers that can help.

Also, we need to hear these stories - you don't read about them very much anywhere else. It sucks having this disease and aging doesn't help either. You have to become another person, but I agree that faith and the human spirit can conquer a whole lot.

I hate the thought of you giving up the horses. Hoping that you will find the perfect place for them.

best wishes,
paula

Strong spirit
 

I can scarcely even echo what others have said with my poor words. You are loved, M, that much is obvious. Your spirit is still yours, and in my view already healing. I believe that the stronger the spirit, the less it matters what happens. I think of a guy who steers his wheelchair by blowing through a straw, or another who writes books by focusing his eyes on one letter at a time on a screen. I also think of children I have seen on the streets of South Asian cities, tiny little beings, going out in the morning with their grubby plastic bags to dig through garbage for food and salable items. While their suffering doesn't diminish yours or mine, they show us what can be done with misfortune. Thank you for your continued trust in our community. Good will come of it.

I see doctors in Baltimore. They don't understand my fear of DBS. It's their "treatment of choice." It's my life.

Jaye

MKane painful to read your story

I've a similar one - had bilateral DBS STN in Mar 07

Excellent dr's at Cleveland Clinic but

I gave up after 7 tries at programming 11 hour car trip hotel room-gasoline expense etc.

Don't know what I'll do in future - feel kinda pitiful right now

Best to you

Mike

darn!! Husband Kevin had his DBS in Feb 07 and it has been a roller coaster ride down hill ever since. Changed neuros and programming got somewhat better but like Mkane it doesn't hold more than a week or so........it was not at all what we had expected or hoped for.:(