When is it enough?

[tara g]

Many

to you Laurie, and to you and your husband.

 

[stephanietx]

That makes perfect sense to me, Laurie. When there's not a strong will to get better, no matter the reason (PTSD, depression, or whatever) it seems to make the pain worse. It takes a lot of mental strength to get well and fight the chronic pain. It's exhausting, which doesn't help matters any either.

Lots of big hugs for you.

 

[starryeyedtiger]

Laurie you and Gary both are in my prayers

Have you guys ever been to Vanderbilt, here in Tennessee? I know it's a long trip, but they are huge on research trials and it might be worth making a phone call at least

 

[alleygirl]

Laurie,

This is a fairly new article but I'm thinking this may be the same thing Gary already tried this past year. I thought I would link it though, just in case its something different.

Sending HUGE

to you and Gary both. I pray they will find a solution to this horrible disease soon.

 

[mbjerkness]

I suffer from fibromyalgia, There are days when I feel I can't go on. My pain is nothing compared to Gary's. I pray they find something to relieve his pain

 

[ldg]

Originally Posted by AlleyGirl

Laurie,

This is a fairly new article but I'm thinking this may be the same thing Gary already tried this past year. I thought I would link it though, just in case its something different.

Sending HUGE

to you and Gary both. I pray they will find a solution to this horrible disease soon.

His pain management doc wants him to do this. He had the optic nerve stimulators and the supraorbital stimulator done. He did find a setting that would trigger an attack.

The problem is that we don't have insurance - which doesn't really matter, because when we did it wouldn't cover it. The surgery/devices are about $80,000+

Originally Posted by mbjerkness

I suffer from fibromyalgia, There are days when I feel I can't go on. My pain is nothing compared to Gary's. I pray they find something to relieve his pain

Chronic pain is chronic pain, and suffering is suffering.

 

[bastetservant]

Aw, Laurie, you are such a positive, light giving, hopeful person here who gives so much to so many - human and feline. I'm sure your husband is here today because of the special, warm, life affirming energy you give off - the love you give.

Illness breeds depression, which breeds illness, and around and around.

You said you both had therapy, and I know that is not a cure all or an answer much of the time. But if Gary is still suffering guilt from his war experiences, maybe he still has to deal with that?

I don't know what to say except I'm really sorry that both of you have to endure this. Life is so very, very difficult for so many, so much of the time. I don't understand it.

I just know that the world is a better place because you are in it, and that Gary is a lucky man to have you.

God bless!

Robin

 

[sarahp]

I wish there was something someone could do. If I could beam you guys over here to see Dr Goadsby, I would, just to give it a shot.

I know you have tried everything, and poor Gary has been through more than any human should ever have to. I hope research finds something else that would help him, and soon

 

[bellaandme]

Laurie--I'm so so so sorry--I didn't realize this was happening! I'm sending vibes and love and strength your way, my friend. I wish I could help you like you've helped me

: vibes:

:h ugs:

 

[-_aj_-]

Oh Laurie I'm so sorry many

from across the pond

They are doing a new treatment over here but its for constant headaches nothing as severe as what Gary goes through every day

 

[wellingtoncats]

Everyone asks each other what they want for Christmas all the time and I know all I want for Christmas is for Gary's pain to go away!

Will be thinking of you both this week

 

[alleygirl]

Originally Posted by LDG

His pain management doc wants him to do this. He had the optic nerve stimulators and the supraorbital stimulator done. He did find a setting that would trigger an attack.

The problem is that we don't have insurance - which doesn't really matter, because when we did it wouldn't cover it. The surgery/devices are about $80,000+

I wonder if you could find a way to contact the docs involved and explain Gary's situation? With his attacks being non-stop and lasting for so many years with no relief it seems he's an unusually severe case. Maybe they would be interested in trying to help because he's so "different"? Doesn't hurt to try to write them maybe.

Originally Posted by WellingtonCats

Everyone asks each other what they want for Christmas all the time and I know all I want for Christmas is for Gary's pain to go away!

Will be thinking of you both this week

Keeping you both in my prayers

 

[Winchester]

I'm so sorry that Gary is dealing with this. Sometimes it just doesn't seem fair. I admire your strength and courage in helping him.

Originally Posted by AlleyGirl

I wonder if you could find a way to contact the docs involved and explain Gary's situation? With his attacks being non-stop and lasting for so many years with no relief it seems he's an unusually severe case. Maybe they would be interested in trying to help because he's so "different"? Doesn't hurt to try to write them maybe.

At this point, I think I'd try it. You never know....he might be accepted simply because of his condition.

Many, many

for you to help you gain more strength through this. I'm thinking of you.

 

[snake_lady]

We talk everyday, so you know my thoughts, feelings, and that I love you both so very much. It pains me to see you this way, but you know I'm here, always....just a msg/text/email/phonecall away, anytime

You are my best friend, you've been through everything these last couple yrs have brought on me, we share the "lovely joy" of chronic pain tho on opposite ends, and I know Mark feels completely helpless at times too, and I wonder myself if I caused some of this.

It is truly a vicious circle, and I am not going to wish for things that I know aren't going to happen, or suggest therapy that won't help. I'm going to tell you I love you and you know I mean it, I would do anything for either of you and am thankful to have gotten the smiles I have recently, and hope you both can hang in there and do "the plan" for this month. If I could give up my strength and pass it on, I would....but you are one of the strongest people I know.

I have learned so much from you and Gary, and value that more than you prolly realise. When others were judging me, you were there for me.... when I'm whiney and having a pity party, you would console me..... when I'm sad, you'd be sad..... when I'm happy, you'd be happy for me. I love you so much my dear friend

You are truly an inspiration for many, a savior for many (felines and humans alike ), kind and non-judgemental. The world could use more ppl like you.

I'm going to leave this with: I'm always here, I always will be no matter what as its unconditional. I will keep you in my thoughts, and hope you and Gary can pull out the strength to do what needs doing, for that is realistic. And I will be there during, I wish physically but that is impossible right now. But I will be there for you, as you have for me.

 

[kailie]

Sweetheart, I can't even begin to imagine what you and Gary go through each day, but it doesn't sound like any way to live. All I can hope is that there will be some kind of help out there for him that will come to light soon.

I am here for you.

 

[larussa]

I am so sorry to hear this, you are a very strong person and hubby is so lucky to have you. I don't know what I would do in this situation except to do exactly what you are doing. I hope there is a way to get Gary out of all this pain, it's is a terrible shame he must go through this.

 

[denice]

I am so sorry both of you are going through this. I don't cope with pain very well so I can't imagine coping with something like this.

 

[ldg]

TCS really DOES have big shoulders! I've written it myself to others... I'm just one of those people where it's so much easier for me to give than to take. But despite support from people who understand and don't judge me or the decisions Gary has made (especially Chris, which you've helped me more than you could ever know

), every once in a while I just need to put it out there. This is really hard sometimes. Well - all the time. But sometimes it's just too much, and I need hugs and encouragement. When my light burns dim, it needs some fuel, and I thank ALL of your from the deepest part of my soul, truly, for your support, your encouragement, your kind words, and for reigniting the hope ON WHICH I MUST FOCUS.

 

[eilcon]

I'm so sorry you guys are dealing with this, Laurie.

I'm grateful and inspired by the fact that you continue to reach out to others on TCS, offering so much advice, support and many hugs, in the midst of all you guys are facing. You're an amazing person!

Please know Gary and you are in my thoughts and prayers.

:h ugs:

 

[ldg]

Originally Posted by sarahp

I wish there was something someone could do. If I could beam you guys over here to see Dr Goadsby, I would, just to give it a shot.

Actually, we wrote him directly, and have remained in contact. Gary's pain management Doctor flew out to meet him at a neuro conference, and he's provided significant consulting services at no cost.

(For those who don't know Dr. Goadsby is the world's leading expert on the condition, though Dr. Silberstein of the Jefferson clinic is a close second - they've published together).

Originally Posted by AlleyGirl

I wonder if you could find a way to contact the docs involved and explain Gary's situation? With his attacks being non-stop and lasting for so many years with no relief it seems he's an unusually severe case. Maybe they would be interested in trying to help because he's so "different"? Doesn't hurt to try to write them maybe.

It definitely doesn't hurt to try. As it requires a brain surgeon to do it, Doc has offered to obtain the equipment at cost, and has talked to the surgeon at Columbia that has experience. The $80,000+ is with the discounts.

The small permanently implantable devices cost a lot.

The problem is that because he's got atypical symptoms, he doesn't quality for any of the studies (as he doesn't necessarily have a good chance for a positive outcome, and let's face it, that's part of what they look for in accepting candidates into those clinical trial programs).

I didn't mention, but Gary additional has problems with extreme fevers. The hypothalamus is considered the seat of the problem with his condition, and it appears to be just broken. The hypothalamus controls your body clock (non-existent in Gary), your pituitary gland and all your hormones (all wrong in Gary), and your internal body temperature. He has bouts of seizures, where he starts shaking/shivering, and his body temp starts heating up - to 105, 106, 107 degrees. We use cool clothes, and then it slowly comes back down. His normal is 97.2. It takes 3 - 7 hours to do the full round trip. But you can imagine how that leaves him feeling. It's not something from which you recover right away. ...and yes, we did the infectious disease doctor route. He ended up at the top doc in the country, which is on the east coast. He runs the largest research budget in the country, and accepts only 3 new patients a month. The diagnosis: Central Fevers. Just means no known cause.