Steve's Parkinson's Disease Fund

My husband, Steve Johnson, has been diagnosed with Young Onset Parkinson's Disease. He is 39 years old.  Parkinson’s is a progressive, neurodegenerative disease wherein the neurons in a specific part of his brain are dying, causing tremors, muscle rigidity, slowness of movement, dystonia, and difficulty swallowing, among other things.

While the diagnosis is new to us, Steve’s symptoms have been present for about 5 years.  He has a significant tremor in his right arm along with periodic dystonia, and he has recently begun to notice the tremor moving into his right leg as well.  His movements are slow causing things as simple as buttoning his shirt to take several minutes, and he experiences stiffness throughout his body.



Parkinson's Disease, especially Young Onset Parkinson's, is unpredictable and no one can tell us how quickly it will progress.   Today Steve mostly has good days. But the days he is unable to get up, or drive, or dress himself, or walk, may in 6 months, or 12 months, or in 5 years.

 
All of the advice we have been given is to have our life in order, financially and otherwise, and to be prepared for the worst because of this unpredictability.

 
Though Steve and I are in our 30s, we are young in our careers. We have a 16 month old daughter, and we are utterly unprepared to deal with this unforgiving disease at this point in our lives - a disease that will render Steve unable perform basic activities of daily living.

So we are left with this option; humbling ourselves before our friends and family, their friends and family, and hopefully their friends and family as well, to ask for help. 

Steve has started a treatment regiment, however Parkinson's Disease has no cure, and the treatment we believe has the best hope of at least slowing the progression of this disease is not covered by insurance - and is expensive. 

We are raising these funds to be able to provide Steve with the care he needs, the care this sweet, loving man deserves.

 The funds will be used for his treatment, medications, home-care costs, home safety modifications, and to prepare us to be a one-income household with on-going medical costs.

 Steve is an amazing, loving, and generous friend, and more than I could have dreamed of as a father to our daughter. He gives to others every day working for a non-profit company for adults with developmental disabilities helping to educate the community and place his clients in jobs suitable for their needs.

 I want nothing more than to be able to care for this man who has given me and those around him so much in this life.

 We cannot thank you enough for your donation to Steve’s Parkinson’s Disease Fund, and for your support.  Our pledge in return for your kindness is that we will live the best lives we are able, we will always help others where we are able, and we will find and create opportunities in life to “pay-it-forward,” as you are doing now.   

And finally, please share this campaign through Facebook and email with a personal messages from you to your network asking them to read it, consider contributing, and sharing as well. That is the only way this campaign will be successful. 

 
Thank you for your love, your support, and the incredible gift of your help.