I am posting this story to ask for your prayers and/or good vibes to be sent this way for a couple who are dear friends of mine.

Bobby and I met through the local support group. We had a lot in common. I had just had experimental brain surgery, and he had done so at the same facility about a year prior.

Bobby had the worst dyskinesia that I have ever witnessed, and I've seen many. His head, for example rolled like the exorcist . Bobby was in the DBS study, and it had done wonders for him. But he needed more than an experimental surgery. He was unemployed, going through a divorce, and was being "cared for" by his first-grade daughter! And all of this misfortune was directly linked to having Parkinson's. (sound familiar)

Then Bobby's luck started getting better. He had the opportunity to have DBS again (only this time more strategically by using STN placement (subthalmic nucleus). His dyskinesia was almost entirely absent - for a while.

A dear, sweet lady who had lost her husband to cancer, Judy, found Bobby, and the two clicked. They had years of fighting the system and could not marry because the insurance would be dropped on Bobby. However, just recently I attended a lovely Hawaiian wedding - the bride and groom being Judy and Bobby.. I even took Bobby to a PAN forum a few years back.

And they lived happily ever after . . . NOT! Judy was having some neurological problems, and just this week had tumors removed from her brain. OK - things are still looking good . . . NOT again! The path report came back that Judy has GBM tumors - glioblastomas - the most aggressive type of brain cancer known.

Like I said, life just isn't fair. Judy was discharged to go home yesterday, and I'll pay my visits (taking fried chicken today), but what next? There's really nothing they can do for Judy, and Bobby needs help as his PD progresses. He's been on a walker for some time and his voice is barely decipherable.

So I ask for the one thing you can do - no, make that two things. Send prayers and good vibes their way. . . and do all in your power to help fight ALL neurological illnesses, especially Parkinson's.

Oh, a bit of good news - Bobby's daughter has grown into a ravishing beauty!

Peggy

Peggy: I am touched by your compassion and pray for Judy and Bobby. Life is certainly unfair but being surrounded by love and sympathy during tragedy is a blessing which we thank God for it.
Imad

Peg, Consider Bobby and Judy included in our prayers. You inspire us with your caring and compassion for these struggling folks!
Robert

Is this the Judy I met? Regardless, I will pray for them.

paula

Not the Judy you met, paula. But Bobby is the one I have journaled about many times before. Here's one entry (and it will probably be in our book, also):

Recently, I received a call from the rehab facility where our Parkinson’s support group meets. The lady gave me the name of a person who “needed to be contacted” and showed an interest in joining our group. I took the
number and forgot about untils I started making plans for our annual picnic. I saw the sticky note on my roster of members and decided to give “Bobby” a call. I am so glad I didn’t pass up this opportunity.

A child answered with a lengthy pause before speaking to my intended party. Bobby’s voice sounded weak and nervous. After a few of the “formalities” of informing him when the group met, membership, and programs; we got to the meat of the conversation. I shared first, “I’m 49 - honestly- and have been
diagnosed since 1994,”. But it was Bobby’s response that left my mouth gaping.

At 27, Bobby was diagnosed; and he was now only 38. He had been through DBS (deep brain stimulation) and was still having difficulty with tremors and dyskinesias. He was also in the midst of a divorce and custody battles.
“Bobby!” I lamented, “You’ve been enduring this battle all alone?” He shared how he had become somewhat of a “recluse” for the past 11 years. For 11 years Bobby had been trying to fight the war of severe tremors plus all the other PD symptoms, was disabled and having financial difficulties, and was now fighting the losing battle of divorce . . . all of this alone! What’s so sad is that Bobby lived within 10 miles of my home.

After swallowing the lump in my throat, I shared some online sites with him for information and support. Then I invited him to our upcoming picnic, and we exchanged e-mails. My heart melted as he told his story - one that needed to be shared immediately after his diagnosis was given . . . not 11 years later.
In our story comparison, I was an elementary principal - in the limelight of the community’s eyes. My symptoms, diagnosis, and battle with Parkinson’s had been followed by many from the onset until my disability retirement. Even then, my network of support was insufficient to prevent the depression that followed.
It has only been the past year that I felt that I had control of the
inevitable monster.

As I hung up the phone and immediately sent a follow-up email, I wondered how many other young onset victims were out there. How many were becoming a “recluse” as Bobby had described himself? How many could or would have benefited emotionally from being able to share their battles of job security, raising children, weathering relationship changes or treatment
options? I shuddered to think. Although I was thankful that I had opened this door of opportunity, I still shed a tear of remorse for not finding it sooner.


Thanks to all who are adding these people to your list of "people to think about often."

Peggy

Peg-

I am lighting a candle for Judy and Bobby...AND refusing to give up hope for their situation.

Thank you, dear, for bringing them into the light so we can share your concern for them.

Fiona, thank you. And thank you for the support I feel here. Although Robert, Fiona, Paula and imark are the only ones who have responded, there are over 150 who have read the post and I feel the strength being built in this couple's life.

When my husband and I took the meal, Bobby was lying down on the sofa, and Judy was walkiing around (her hands were flailing like she had dyskinesia). She said the surgery had caused numbness in one hand, but that she was told it may come back. She was in the best mood! And her head reminded me of my brain surgery, only she was cut and stapled in two places!

Bobby was sort of in a daze, then we fell in each other's embrace, and he sobbed incessantly (and so did I). Please continue to pray and do whatever you think might help (I believe in miracles!)

Peg

Sending healing thoughts and hoping they bounce off of every one of us, collecting and become bigger and stronger with every jump.

Prayer and White Light for Bobby and Judy.

Yup, sometimes life isnt fair..My thoughts and prayers go out to Bobby and Judy