Let me share my essay on Living with Parkinson's

[wordworks2001]

I remember the day I was diagnosed with Parkinson's disease. My reaction was not one of resignation, nor did I come to the knowledge I had this incurable disease with fear or trepidation. The very first, initial reaction I had was relief. Yes, relief.

"That's it? That's all I have, Parkinson's disease?" I asked my family practice doctor, incredulously.

"What do you mean that's all?" Parkinson's is a pretty significant medical condition," he reminded me.

"Yeah, but not as significant as what I thought I had. I thought it was something really serious, you know scary and almost instantly debilitating and certainly a lot more fatal and a lot quicker to kill than Parkinson's. I thought I had Amytrophic Lateral Sclerosis, you know, Lou Gehrig's disease," I replied.

"Nope, you have the classic Parkinson's robot walk and all the symptoms you are exhibiting are classic Parkinson's, but it will take a consultation with a neurologist to make the diagnosis," the doctor answered.

It turns out, the benign essential tremors my Army neurologist diagnosed me with three years before were probably the precursor to Parkinson's. He told me that all of us will get these tremors as we get older.

"But I'm only 44 years old." I told the specialist.

"Some people get it younger than others," was his answer.

The medication he started me on worked at first. Then the symptoms slowly, insidiously and actually unnoticeably began to become more severe. The tremors got worse. My movements became more and more stilted.

Over the three years that preceded my Parkinson's diagnosis, I had been experiencing annoying symptoms that were slowly getting worse and limiting the physical movements and activities I performed to get through the day. It was impossible to rise from bed in one movement as I could in the past. My walking became more of a shuffle.

After three years, I finally realized it was not normal to need to grasp the top of my car door and pull myself out of the car. My peers and fellow workers didn't lose their balance and sometimes fall or seemingly trip over something that was not there. I noticed myself "freezing" as I hung up my coat in the closet or tried to step over the bathtub.

However, the fear that what I was experiencing was the fatal neuromuscular disease A.L.S., kept me from going to the doctor with the symptoms. When I finally did, I realized how foolish I had been. If it was the disease that killed Lou Gehrig, it was certainly terminal and debilitating, but it would have been terminal and debilitating no matter what I did. The Parkinson's could be controlled, it was incurable but treatable.

When I had my appointment with the neurologist a week after being tentatively diagnosed by my family practice physician, I was found to be in Stage II Parkinson's disease. I was started on a medication called Senemet, a combination of L-Dopa and Carbi-Dopa. My first tablet gave me what I can only describe as an incredible rush. Within 15 minutes, the chains that caused me immobility and robot-like movements, the freezing and stilted movements, even the tremors were instantly gone. I became younger again. Although I was warned that the drug would only last 10 to 15 years, I immersed myself in my new found freedom. I began bowling again. I ran and swam. I was like a kid again, for a couple of years.

The Parkinson's symptoms, which would sometimes return between doses of medication, now haunted me all the time. A simple medication adjustment and the addition of another drug, pramipexole, helped for a while. The pramipexole caused me to become a compulsive gambler and I lost my job, my wife, the respect and relationship I had from and with my children and family, my car and became a hopeless homeless derelict, but the tremors and Parkinson's symptoms were under control.

In 2001, a neuropsychiatrist at the VA Hospital in San Antonio warned me about pramipexole. He said there was a theory that it caused compulsive behavior and tried to wean me off of the drug. But by this point in my life, having lost everything that was important to me, when the weaning did not work, I told the doctor I preferred to be a nonshaking compulsive gambler than a homeless person with tremors. I stayed on the pramipexole.

By 2004, I was in Indiana and I began seeing another neurologist. He took me off of the pramipexole and put me on Amantidine. The new drug worked and I no longer felt the urge to gamble. I also must thank a 28-day residential compulsive gamblers program I participated in at the Brecksville, Ohio VA hospital just before getting off the pramipexole as well.

It is now three years later and sure enough, the Senemet is not working as well as it used to. In fact, it is quickly losing its potency and my symptoms are back pretty much the entire day. In the morning, I have a difficult time getting out of bed and getting dressed. I take my first dose of Parkinson's medication at about 3 AM and it doesn't start working until about three to four hours later. I have started losing my balance again and freezing. I have fallen a few times.

I have been forced to quit a job I dearly love. I am not the man my wife married a little over a year ago and I cannot provide her the intimate moments she would like. Making love is a chore for her and that hurts me deeply. I won't accept pity sex and she is 16 years younger than me and deserves more. I am not a happy camper and I don't want to live like this. The people I love do not deserve having a burden like me imposed on them. I don't know what I will do.

I am scheduled to return to the United States on May 31 after completing my last day in a job I had hoped I would die doing. I am totally miserable and feel like a failure. I am toying with the idea of getting off the airplane in Detroit on June 1 and not getting on the final leg of my trip home to Indianapolis. I think that would be a better outcome than the misery I expect will occur should I continue to be part of my loved ones' lives.

I have three grown daughters who won't have anything to do with me. Perhaps the best thing I could do for my new family is disappear. I started this essay intending to create a positive picture of how to cope with Parkinson's disease. I am afraid I have failed.

[maryalice]

All of us who suffer with this disease have thoughts like you're having. It's just so frustrating. You feel like the person that you really are is trapped inside this body that you don't recognize as your own anymore. Try to change the way you are thinking. I know it's difficult, but just take one day at a time. Your loved ones need you in their lives. Decide that your aren't going to be a burden, but a blessing. I hope things get better.

[ronn]

Your question did not fail. It was articulately written and revealed problems which many of us have faced, some successsfully, some less so. I also felt relief when diagnosed with PD. I also had a brush with pramipexole and its resultant compulsive behavior but got away in time. I am sure that there are many PWP on this site who will benefit from your experience and value your advice. As for your family, hopefully they will learn that bad experiences come from the drugs and from the disease, not from its victims.

Wishing you well.................

[Carrigan]

I read your essay and I hope that by writing it you may feel some relief from your obvious suffering. I am a wife of a PD sufferer now 17yrs, it is difficult for us to accept and I often wish it was myself who had the diesease, sometimes it diffucult to know the best way to tackle some of the problems your partner faces, but I can say it can get better, people do learn or at least learn to accept, We have eventually grown closer in some ways. All couple have problems I am sure with or without PD hindering them, but through love and understanding it can work. My husband has been through so many changes in medication including the pramipexole, stalevao has been good for us. However now as we gets older other physical problems occurr, he had a heart attack one year ago, had surgery and thank God his quality of life is back to what it was, this was so scarey and made me aware of how much I love him even with his PD. I believe you are a very talented person, you write well. Use this to vent your problems, its good to share. I wish you the very best.

[fishinggirl]

I just read your story with tears in my eyes. Some of your story is familiar to all of us with Parkinson's. My thought after reading this is how brave you are to post your story about living with Parkinsons. Most of us just keep it bottled up inside so we don't upset others in our lives. Keep on being so brave in your living with Parkinsons and hopefully your life will turn around.

[SuKas]

So well articulated and such a heartfelt write up...I know what u mean by relief...felt that for a lil while too...and the brush with Mirapex/ropinarole...had to withdraw from it last year, and life ahs never been the same....Our marriage has had issues but I hope we are working it out...It is difficult when u have two little kids 10 and 12 to look after....tc and wishing u all the very best.

[shasha]

i also have just read your story and find it both good, as in encouraging and bad, asin depressing and negative but over all it is told so well and so lucidly that i cannot but congratulate you on it ... please carry on writing and living ....

[pen1]

Thankyou for your eloquence. Your essay should be required reading for all neurologists, nurses and anyone involved with PwP. I hope you won't disappear.

[wordworks2001]

Thank you all for the kind words. I am glad I was able to touch so many people. I must say I am doing much better emotionally and mentally if not physically than I was when I wrote this essay in 2007. I remarried last August and my wife is my best friend, lover, confidant and caregiver I could ever ask for. I feel much the same way about PD as Michael J. Fox does, in fact, I look at every experience life has brought me as gifts that have served to make me wiser, more empathetic, and more appreciative of life. Thank you again for the thoughtful responses and I can't express how grateful I am to have helped someone else who has PD or is taking care of someone who has it.

[Joyable in reply to wordworks2001]

Glad you added this comment. So good to know how you're doing now. Knowing what it was like for you in 2007 and that you have made your way through to where you are today is inspiring for me and probably many others. I think your story will provide me with hope & motivation to hang in there during my most difficult times with PD.

I too was relieved to finally find out the cause of my symptoms. That there were things that could be done to ease my symptoms & slow progression. And I also have family who don't get it. They think I'm not trying. Think I'm lazy. Show me little respect..

After Dx, it was family disbelief, and lack of support, interest, knowledge, understanding & respect that were most distressing. Have any of your family come around? I have a close cousin who finally understands. It's made a world of difference to know I'm not alone - someone is aware of what it's like for me & is looking out for me.

[wordworks2001 in reply to Joyable]

Joyable, two of my three daughters communicate with me. My youngest is a medic in the Army and is very empathetic. I moved to a small town in central Indiana after my divorce and pretty much lived like a hermit for four years. I even grew a full beard and shoulder length hair. I spent many hours in the woods all though years and became an expert bird watcher. New Years Eve 2010 I decided to become a social animal again, shaved my beard and head and began communicating with people. I met my wife in March 2011, we married in August. Her entire family, including three step daughters, are very accepting of me.

Believe me, you are not alone. There are a lot of PwPs in our worldwide family.

[JanellenGrimaldi in reply to wordworks2001]

Glad you are feeling better overall. Very inspiring!

[Carrigan]

Thanks for your response, you are very talented and can put across what it is like to live with PD ,yes I agree with others you should share this with others especially the professionals who often are not fully aware of the problems. I have lived with PD caring for my husband for 17yrs I have been a nurse for 44yrs and it was not until my husband got it that I have become to understand all that it entails in a 24hr day every day, even though I have in the past nursed people suffering with the disease, I feel guilty as a nurse that this can happen, but strive to pass on all I can to make people more aware of what PD can entail.

Keep up the good work and I am so pleased you have someone to share in a positive way .

[parkinsonshelp]

Your story sounds so similar to mine. Although I am not a woodworker anymore, I used to be. I was a cop when I too had to quit. My wife was 17 years younger than me at the time and well, she left for same reasons I believe. We were married for 18 years but you know, it was for the better. I am remarried to someone that fully understands my disease and unfortunate symptoms. I hope the best for you. The best thing you can do is what you're doing, write and talk about it. God Bless.

[wordworks2001]

Actually, wordworks refers to writing. I was a safety consultant, working in West Africa, flying business class and making the big bucks at the time PD made me unable to work. I really missed the job more than anything but now I am accustomed to my forced daily routine. I am a bird watcher, I do some freelance writing and have a great little dog for a companion and a great wife. I truly feel fortunate for the way my life has turned out. It could have been much worse.

[JanellenGrimaldi]

I was moved by your disclosure re: your Parkinson's. I am early stage, Dxed in '09, and tried two meds, (Mirapex and Ropinerole) but the side effects were so sickening and the results were nil anyway, so I stopped.

I try to do everything I can to control the progression, e.g. exercise, walking, playing my viola (which has been very adversely affected by the right hand tremor..;().

I don't usually like to say this kind of thing, but I do feel your anguish in my way. This disease may not be Huntington's or ALS, but it sure sucks as there is no CURE and the treatments cause more problems than the illness itself!

Keep "writing it out" here. It helps me to know that folks are listening and share the struggle with this demon.

jeg

[FrankBerson]

My sailing friends of the last 20 years have stopped inviting me out on their boats. This can not be because PD is contaigeous. All our current circle of friends have PD.

So it goes