Stories

Cassie

Volunteering for Research Gave Us Quality of Life

Diagnosed at 36

I was diagnosed years ago with young onset Parkinson's disease, my husband Bruce and I and our three children (Kate was 14, Eddie was 11, and Carissa was 4) had no idea what the future held for us. I was sure of one thing. I did not want my family to walk on eggshells around me. My son caught on quick when I told my kids that I had PD. I said I was still going to be their Mom I just might be a little slower, his reply was good “I might actually win in a race against you now,”as he smiled up at me though his glasses. That is my boy.

I had once thrived on multi-tasking, the bigger the challenge the better. That was no longer the case with PD. Two years after my diagnosis I had to give up my career as bank manager. I soon began having less "on" times. My mornings were a race between my medication and foot dystonia - the meds rarely won. Bruce had changed jobs, and he took a cut in pay. I could no longer be alone at night. It was very tight financially but we were getting by, then I fell in the Medicare donut whole and we had to choose medication or mortgage. We chose the medication then filed for bankruptcy. My doctor had tried changing medications to ease my mornings, but I could not tolerate the change.

The "on/off" fluctuations began to increase. We moved closer to Bruce’s job, he came on lunch to see that I was okay. I had a few instances where I had driven the car and had to wait until my next dose of meds kicked in to come back. I sat for two hours one day. I fell asleep at the wheel once but woke up just in time. It was time to stop driving.

Within the last two years, my "off" times became less predictable. One morning I walked Carissa the bus stop. There had been a crime spree going on, and I did not want anything to happen to her. As the bus drove up, I could feel the meds were wearing off. Carissa got on the bus, I quickly turned to go back, took a few steps, and that was it. I was frozen, unable to move. I sat on the bridge, felt in my pockets. No meds, no phone. So there I sat on the bridge, fifty yards from my home. The first thing that came to mind was Laurel & Hardy, "Well here is another nice mess I have gotten myself into." I was so mad at myself. My Doctor had warned me not leave the house without my meds or a phone, but did I listen? I prayed God would help me. It was not more than two minutes.  A man walked up to me and said, "I work in the building across the street. Are you okay? I have seen you walk you daughter to the bus in the past but never just sit on the bridge?" I told him what had happened, and he took me home. Thank God for the kindness of strangers.

At times, I would become so dyskinetic I felt like Jim Carey in the movie The Mask, “Somebody stop me”! By the summer 2009, I was only having a few good hours a day. That’s when we decided it was time to move back home. Our family and friends were willing to help. I was fighting with everything I had to keep going.

I thought back to when I was first diagnosed.  So much has changed in over nine years. My daughter Kate had chosen a career in health care. She takes care of the mentally and physically disabled, and she has given me my first grandchild. Eddie, who I was afraid would never move off the couch with his video games, has grown into a responsible young man; he just graduated with a bachelor’s degree in computer information technology. Carissa, my baby,  has become a beautiful person - inside and out - and an excellent cook. My husband and I have grown closer because of my PD. Every time he would pick me up, not just physically but mentally, I could see deep inside how I was breaking his heart. There was nothing he could do but watch me slowly fade away. It was time to find a way to be back among the living.

I found all the information I had stuffed in that drawer. It was a 12-week double blind drug study on the efficacy and tolerability of Levodopa/Carbidopa intestinal gel. The gel is pumped into the small intestine from a j-tube that is surgically placed sending a very small dose of medication every minute for 16 hours a day. What this does is level out the highs and lows. Once I completed the 12-week study I was invited to do a 12-month study with the real Carbidopa/ levodopa gel. After that was completed, I could stay on the drug until it got the approval of the FDA. The cost to me would be nothing. My medication and surgery to place the j-tube would be free! To me that sounded like the best option.

During the 12-week double blind study, an abundance of record keeping is done. I was certain the gel was the placebo, but I was not turning back now. Time for the 12-month study. It was September, back in the hospital again. This time, once I was receiving the gel I would stop the other medications. I started my day early so at 4:30 am the nurses came in with the cartridge. I connected it to me. After maybe five minutes. I looked at the nurse. I said “no way,” I can already start to feel the effects - the rigidity was easing, my breathing was becoming easier. The nurses left and said they would be back in 30 minutes. After 20 minutes, I was on my feet in almost a run to the nurses’ station. I had a grin on my face. I could feel my arms were swinging when I walked. I said in a clear voice “Look at me, I am walking. I can’t believe it." The nurses were amazed at the transformation.

I ended up staying in the hospital 10 days total. I had a chance to get my strength back. The only Parkinson's medication I am on now is the gel and two Amantadine a day. At night, I do take four mgs of a dopamine agonist to get me through the night. As I walked out of the hospital that day I thought about what a very long time it had been since I felt so free. I could take a deep breath, I was standing straight. I walked with both arms swinging all the way to the car on my own. I feel like I have turned back time. I am no longer on the roller coaster ride of on/off fluctuations. I have left the house to go for a walk at 7:00 am. I have gone to the movies at night. My granddaughter has not asked me, in six months “Nana, why are you sick?’ Instead, we made snowmen for the first time together this winter. I am driving again. Carissa came to me with a big grin a few weeks ago; I cautiously said,”What’s up?” She said, “Next year I can get my permit, now you can teach me instead of Dad." I said, “Let us see when the time comes.” I often catch my husband watching me with a grin on his face. When I asked him, “What are you smiling at?” His response was “I just like watching you.”

The carbidopa/levodopa intestinal gel is not a cure. However, it has improved my entire family’s quality of life. For that, I am thankful.

Cassie

18 Comments

I'm so encouraged by your note. Actually, I can't stop the tears, I'm so happy for you. To be driving again, must have felt so good to be independent and to play with our Grandbaby is a cure to our hearts and our physical health as well. I'm at 6yrs with diagnosed PD, my progression seems to be slower than others and now I'm so excited to share with them how successful your J-Tube Pump is working. This last year alone I had 3 friends have DBS and you sound so like your results are so much better than all the challenges they have faced. Yeah!!!thanks again for sharing.....B

BONNIE VARIAN, Aug 1, 2011

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I hope it will be a great motivation for my best friend
who has PD at the age of 39(05 years now)
I am from Mumbai, India,
will this J-tube be availbale in India. I hope the breakthrough in curing PD is sooner than later.
Thank you for your story.

jude alemao, Aug 30, 2011

I think I would much rath have this treatment than the DBS sounds less evasive and I just dont like the idea of someone drilling in my head. Thanks for sharring your story so others may learn..

Lisa, Aug 12, 2011

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i have had pd for over 30 years. There is one thing that has come abundntly clear to me . When I am asked how i am i sometime respond " my carberator does not work too well but the driver is fine".

If there is ever anything I can do for you just ask.
www.jorgelacostesart.com

jorge lacoste, Aug 12, 2011

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I'm so encouraged by your story Cassie. I believe Pd isn't the end of life but a new beginning. It is real and it is going to affect us and those closest to us, the sooner we come to terms with that the sooner we can adapt and get on with living.
Clearly you have truly loving and courageous support from your husband who sees quality of life in something other than terms of career or income. I suspect if I were to ask him he'd say you're a package deal, there is no sense of sacrifice when you give up something for the one you love in order to improve their quality of life and to be closer to them.
Your experience with the J-Tube is sensational and I expect will give hope to a lot a Pd sufferers that are wary of have DBS, but are running out of options.
Thank you for sharing your story.

Andrew Webb, Aug 12, 2011

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You are such an inspiration to so many. I am 37 and was just diagnosed in January, although I had been having symptoms for many years prior. I am so glad the J-tube pump has worked. I know it must have felt so good to be able to drive again and play with your grandchild. They originally thought my progression was going to be slow but unfortunately its progressing much faster then expected. Thanks so much for sharing your story. It makes those who were unsure of the research trials want to participate. (hugs)

Jennifer Baurley, Aug 13, 2011

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I am truley touched my all of the comments,Having PD has changed my life. Yes I have lost material things and what the disease robbed my body of. But I feel much richer, I have the love of my family and the PD communitty.Thank you all God Bless you!

Cassie Blanchard, Aug 17, 2011

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Cassie, What a great story! I can so relate to the bridge part of your story! People without PD just don't get how we can be on and then off just like that! It sounds like you have a great family and support group and that can make such a difference. I am very intrigued by the intestinal gel surgery. Makes my DBS rejection seem like a blessing! This might be a better option for me! Thanks for making my day!

Ruth Lotzer, Aug 30, 2011

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Your story was so touching and hit home. I am so thankful that this story came available to me. I was diagnosed in 2009, two years after my younger sister was diagnosed (after several years of misdiagnosis). I had not heard yet of the jel, but am so encouraged that should I need it one day, it will be available. Thanks to you and others like you who share their personal discoveries and victories, we can all be more informed and find hope for our future.

God bless you and yours!

Cindy Miltner, Aug 30, 2011

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Although I am very pleased that the dopagel via J tube works so well - I wouldn't change the direction I took with DBS. DBS with placement of the leads to the STN was July 20th 2010. I went a year ago from 5 doses of carbidopa a day (total mg 540) plus Azilect 1mg to Azilect 1mg a day only plus programming. Dopa Agonists were not tolerated. Fluctutations were getting severe. I had a UPDRS score of 36 before surgery to 4 now. I work full-time as a Nurse Practitioner. I have a full home life with our 3 grandchildren and daughter living with us. Without DBS surgery I would be on disability. DBS is really not that scary when done in a good center with collaborative care.

Helen Cassel, Aug 30, 2011

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Thanks for this,it sounds like something I would love to try and stop being so scare all of the time of new drugs and proceduers. I was diagnose in Sept.06,but my slowness started in 04. I would like to know how is this gel is refill, I am going to ask my doctor about having it done if the insurance will pay it is a shame that I have to wait for an approval since I had to stop working and lost the insurance. I am so glad and take this as a blessing sent to clear things up for me to try something other than Sinemet CR 50\200 3xs a day. Encourage is wonderful and may God Bless you all

Almedia Edmontson, Aug 30, 2011

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Thank you for sharing your story. It is encouraging to know that there will be an alternative method of treating PD. Your husband thru his actions show you that he loves you very much-thru sickness as well. You have a very solid support base thru your friends and family.

Thank you for volunteering to do the clinical testing. I am happy it worked for you.

God has a plan for us and sometimes it is difficult to be patient to see why He chose us to be "blessed" with this disease.

Romans 8:26-28

26And in the same way--by our faith--the Holy Spirit helps us with our daily problems and in our praying. For we don't even know what we should pray for nor how to pray as we should, but the Holy Spirit prays for us with such feeling that it cannot be expressed in words. 27And the Father who knows all hearts knows, of course, what the Spirit is saying as he pleads for us in harmony with God's own will. 28And we know that all that happens to is working for our good if we love God and are fiting into his plans.

God works out all things--not just isolated incidents--for our good.

I am a 60 yrs old and "PD Survivor" of 15 years.

Johnnie Comstock August 31, 2011, Aug 31, 2011

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Your words are very similar to mine. Yeah, LCIG pump. I've had mine for over a year, too! I have been telling the story on my Facebook page "People Fighting Parkinson".

Judy Whitmore, Aug 31, 2011

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Can any of us get this gel./ I've been on sinemet for 7 yrs.but this would be a vast improvement to my life.Cassie
your story is fabulous.

patty, Sep 29, 2011

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I am pleased to have come across this website.Cassie;s life story is a great encouragement to us all The fedback from everyone is so positive
We all could cry poor and say why me. I was thiking how easy to fall into the trap of wanting sympathy Just take this morning I needed to get ready have breakfast and leave for an appointment . Guess what it took me 90mins to get dressed with the basic gear and in the dark so I wouldnt disturb my dear wife
I was diagnosed 10 years ago I have since resigned my postion as a school Principal; For the first time in my life i felt so sad i had to leave those dedicated staff and many kids who were all so precoius
How did I respond I could have got angry and I could have blamed God as I profess to being a Christian' God has been good He has shown me that I can come along side people who struggle with the illness and God has shown how dispite experiemcing what Cassie wrote concerning freezing we could so easy to give up Here is so much we can pass onto people

John Masters, Oct 6, 2011

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Patty,

The Gel is still in the study phase tobe able to use the gel you would have to qualify for the study I have attached a link to the study information on the web site PDtrials.org

http://www.pdtrials.org/en/browse/all/1/view/249

Best of luck to you!

Cassie Blanchard, Oct 13, 2011

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Hi I was dignosis with PD when I was 39 . I'm going to make short. I had a job had to quit and go on SSD . My wife of 19 years called it quits because she was afraid when I get worse she couldn't handle it. So I went on in 2009 and in rolled in a clinical trial. I decided that I didn't want DBS and looked for other and found one that was using Gene therapy and I was lucky to get chosen but it was a blind trail 2010 I was told I didn't get it and was asked if I still wanted it I said yes that was my plan from the get go. So went to Boston in Sept 2011 and it done . The results from the others who had it done showed promising results. I will get back with with my results. I hope I paved the way for others .

Anthony , Nov 11, 2011

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Hi I was Dignosis with P.D. when I was 38.I had a stroke and shortly after.I started showing signs of shaking and dyskinesia.So after several Doctors visits and test they figured it out..When I was first told it sounded so very Foreign to me.Then the shock sat it pretty fast!!It was very difficult to explain to my 3 boys what was going on with there father..And my Wife....May God Bless Her...she has been so very strong and supportive through this life changing event......I just want you to know that I understand and will keep you in our prayers...May God Bless You

Kevin, Jan 30, 2012

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