Stories

Dan Kiefer

From the City of Angels to Miracles

Diagnosed at 35

If you had been in my neighborhood park (La Cienega Park) this morning at about 9:30 A.M., you would have seen an odd sight: a man in a fedora hat, with ugly (or at least unstylish) glasses, a very stylish snap-brim hat, carrying a cane in his right hand. None of this was itself unusual, or particularly
interesting, except for two facts: the man was jogging, and smiling. And   of the greatest interest to me   I was him (or he was me, or whatever).

Let me take a step back and explain to you who I am, and how I came to be here. My name is Dan, and I've been living with this horrible disease for 13 years now   diagnosed 12 years ago, which was preceded by one year of nonsense by doctors and others assuring me that I couldn't possibly have Parkinson's.

My back story is far too long to tell here, and I find that I'm less interested in telling it as the years go by. I'd prefer to focus on the now, and try to prepare for the future. Suffice it to say that by the end of last year, I was taking some 20 pills a day (1 Stalevo 150, 3 Stalevo 100, 1 Azilect, 4 Amantadine, 2 Buspirone, 2 Clonazepam 0.25, 1 Clonazepam 0.5, 1 Lexapro, 2 Requip XL, and 3 Trihexaphenidyl). I was taking all of these wonderful medications   and I was miserable.

Because I am so sensitive to Sinemet, it has been an increasingly difficult balancing act (pun fully intended!) to take care of the dystonia, tremors, and bradykinesia without sending me into a full-on dyskinetic episode. The wire on which I was balancing was getting narrower, and it felt like someone had said "As long as you're up there, would you mind juggling these three balls, as well?"

I had considered DBS (deep brain stimulation) surgery for about a year, when suddenly, at the beginning of this year, my world changed. I could no longer run -- I had fallen at least 50 times, and just couldn't take it any more. Running kept me sane, and probably helped my PD -- although research is inconclusive on this point, I strongly believe that vigorous exercise can be neuroprotective. (Ask me where I went to medical school, and I'll tell you -- none of your business!)

This spring, I finally decided to have the DBS surgery. I had the surgery one side at a time (this is quite common), and initially had the implant placed in the right side of the brain (which controls the left side of the body) at the beginning of July. Then, after an unanticipated "complication"   namely, a hematoma the size of a tennis ball between my right shoulder and the right chest cavity in which the surgeon had placed the DBS battery -- was dealt with and explained, I had the surgery for the second side done on August 17th.

Which brings me back to the park today. The fedora covers my scars (I still have about 15 staples to be removed from my head), the cane is really sort of a metaphorical crutch (I haven't fallen in a while, but it's good to have the cane just in case), and the glasses -- well, they are what they are.

My first surgery restored my natural left arm swing, which I had not experienced in over a decade. The second surgery took care -- overnight --- of the "toes curling under" dystonia, which had made it impossible to move for the first 45 minutes of the day -- that is, until I took my first dose of pills.
Behind all of this protective gear, that was me, jogging and smiling. Jogging because I could; smiling because I could jog. I still have a number of symptoms that may or may not be addressed by my DBS surgery, but the DBS has given me something I haven't had in a long time -- hope. For this, I am grateful to my neurologist, neurosurgeon, and nurse practitioner (all of whom were, and are top-notch), and my wife (who is also top-notch). For the swinging left arm and the non-dystonic right foot, which feel to me like minor miracles, I am grateful to whoever is in charge of miracles around here.

10 Comments

gosh Dan.How amazing.I can send this on to so many people who have experienced your previous troubles.it takes guts to keep on when many medics would rather have you do as you are told,just take the tablets and you'll be right.
As you say the support matters too and Debbie is amazing. Diana has told me of all the battles and it can be heart wrenching to watch a loved one battling .
Lots of love to you all from us over in Australia

liz, Sep 27, 2010

reply

Very inspiring life...We share some things in common as I couldnot tolerate sinemet and eventually just had to stop it. The cramps that there are not words for, a DEAD arm, a body so stiff that I am constintaly hurting one muscle or another, and the joy of DBS. I think it saved my sanity more then any thing else. I was 39, 94lbs, and a shaking mess....Now 42, gained way to weight, and far less shaking my life has given new birth. I still struggle with dystonia and other PD symptoms but it does not compare...Thank you for sharing

Pamela Curtis, Oct 8, 2010

reply

Thank you for sharing this. My husband, the love of my life, was diagnosed with PD at 41 just 4 days ago. We are both in deep shock and a lot of fear. Your story offers some hope and for that we are grateful.

Elizabeth, Dec 15, 2010

reply

While on a shopping trip to Longview, Wa my daughter gave me a bad time about me shaking the truck apart. I was 70 at the time. my daughter got me an appointment with the Neurology Clinic at St John medical center at St. John hospital. The doctor put me through a lot of tests. Then he told me I had PD. The meds worked fine for a while then I was sent to OHSU in Portland. The Doctor increased my meds by 2.5 and that slowed it down some. It only effects my right arm but it makes using a computer very hard. In Jan 2011 I was set up to have DBS surgery which is to take place after Feb 25th. I am not sure I want to go through this but something has to be done, anyone who has had this operation, and wants to tell me their story in detail, I would like to hear from them. Thank you Roger B.

Roger Byrd St. Helens, OR, Feb 1, 2011

reply

With all this talk of DBS,is there anyone besides me who has heard of the Duodopa infusion pump? Developed by Solveg Pharmaceuticals(recently acquired by Abbott Labs)this treatment offers a viable alternative to DBS. It has been approved in all EU countries plus Norway, Sweden and Canada, although it is not yet available in Canada. The U.S. is fast-tracking it with the blessing of their FDA.
Duodopa is a carbidopa/levodopa combination like Sinemet, but in a stable gel form. It is fed through a stomach tube (PEG) that is surgically placed in the duodenum,or first part of the small bowel, bypassing the stomach. The part of the tube that is outside the body is attached to a programmable pump that is worn in a small holster, across the shoulders.

Sue Kaye, Feb 28, 2011

reply

PART II
I'll stop here and encourage you to go online and check it out for yourself. Just type in 'Doudopa'!
Like DBS, not everyone will be able to have this treatment,but for those who can, if this is not a less invasive procedure than DBS, then nothing is!
Don't go yet...you need to know that it is not available in North America yet. Yet, as usual, Europe is eons ahead of us and has been using Duodopa on patients with PD since the early 90s! And with good success, from what I gather.
I am 52 with severe dyskinesia and facing DBS in a year or so in Canada. While I am a good candidate for it, it would be nice to try Duodopa first...a stomach tube is rather less invasive than electrodes in the brain - to me, anyways!

Sue Kaye, Feb 28, 2011

reply

PART III
HOWEVER...Duodopa must be established here first and pass whatever clinical trials are being requested by Health Canada. This could take a decade! Until approved by our medical system, it would cost me $130.00 per day. I am presently looking at the feasability of having it done in Nederland.
I hope this gives some of you hope. I have only known about it for a few days, so I hope my information is accurate enough. We must all be proactive with our own care. Duodopa WILL get here, theproblemis...WHEN? For many of us, time is short! ASK your neurologists, push for concrete answers, call the FDA and ABBOTT LABS.
If we don't do it,no one will.
Love, joy and hope to you all,
Sinemet Sue.xo

Sue Kaye, Feb 28, 2011

reply

My husband has PD that was first diagnosed in 1994 when he was 45. After years of taking every type of PD med available, he was chosen as a candidate for the Duodopa study. He is currently the only study participant in the state of Colorado. I will say that getting the meds in a gel form throughout the day does make his "on and off" times remain at a minimum. Until recent back surgery, my husband was a very active individual (hiking, team sports, etc.) and this helped him remain so. If there is a complaint, it is the design of the pump and the tubing used during this trial stage. Sometimes very cumbersome and the tubing often gets kinked or disconnected, which requires minor surgery to put back in place. As a caregiver, I sometimes find it a pain to maintain on occasion, but my husband still swears that it's 10X better than all those pills. We understand that the final product will be significantly streamlined from this study version.

Suzanne M., Colorado, Jul 28, 2011

reply

i am 40 yrs old with severe pd. i had began the duodopa study about 1 month ago and i am 100 x better. this will be an alternative to DBS for sure.

ATA, Sep 3, 2011

reply

All I can is "me too" on everything including the DBS procedure. I had both sides done at once though.

Dalton in NC, Feb 16, 2014

reply

Participate in the discussion and share your insights

In reply to:

cancel