“My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations.” Michael J. Fox
For many people with Deep Brain Stimulation (DBS), their lives have turned out for the better with the miracle of DBS.
Successful DBS is often related to realistic expectations. When I had DBS in 2005, I didn’t remember much talk about goals or expectations for DBS surgery. However, I do recall the gratitude that I experienced in being accepted for this potentially life-changing surgery.
After DBS, I wanted to feel like I did BEFORE I was diagnosed with Parkinson’s Disease (PD)—so full of life and naively thinking that I was invincible. I hadn’t analyzed my expectations in terms of gait, balance, tremor, stiffness or shakiness. I just wanted to feel better.
So, what’s not to expect?
After nine long years I have finally come to grips with what DBS can and cannot do. These are my lessons learned.
1. Don’t expect DBS to be a cure for PD. There is currently no cure for PD, and it continues to be a progressive and chronic disease.
2. Don’t expect DBS to prevent the progression of PD.
3. Don’t expect that you will qualify to be a DBS candidate. If it happens that you do qualify, be appreciative that you have an additional option to consider for your treatment.
4. Don’t expect that one DBS programming session is all that you require. It frequently can take up to six months or more for optimum programming and adjustment of your medication.
5. Don’t expect that DBS can relieve ALL of your motor symptoms such as tremor, dyskinesia, dystonia and rigidity ALL of the time. But do expect DBS to manage SOME of these symptoms SOME of the time.
6. Don’t expect that DBS to be a treatment for your non-motor symptoms of PD such as speech and swallowing problems. These problems in addition to gait difficulties sometimes worsen as a result of DBS.
7. Don’t expect that after DBS you will be functioning as an athlete, when in reality, you are living more like a couch potato. For example, if you haven’t run a marathon before DBS, don’t expect to run one after DBS.
I’m not saying that you have to lower your expectations, but it’s important that you at least clarify these expectations and those of your spouse, family, and DBS team. You need to discover the similarities and differences in expectations and have some consensus among these expectations.
Once identifying your expectations of DBS and determining if they are realistic, you must accept the potential benefits and drawbacks of DBS and that whatever results you experience from DBS, that you will have the courage and strength to handle it.