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Michael S

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Daphne
My wife Vicki's als seems to me to be progressing rapidly. Due to increasing 'falls', she has chosen to stay in her wheelchair all of the time now. When I asked her doctor he will only say "each case is different", and doesn't offer much information beyond that. Next week we are traveling to University of Alabama Birmingham to see her diagnosing doctor, Dr, Shin Oh. Lately Vicki has been reading about "lithium treatments", and makes them sound nearly miraculous. It sounds so good that it's difficult for me to belief it's even possible. I want desparately to believe they'll work, but I don't want Vicki to be needlessly 'crushed' if they don't... she has such high expectations. Has anyone out there had any experience with "lithium treatments"? Do they work? What do they do for the patient? Are they expensive? Can they significantly prolong life? Do they improve the quality of life? Are they even accepted in this country? Are they experimental?

I've become very depressed and have had to seek the "help" of a psychologist to help me through my 'grieving process'. I constantly feel sick to my stomach over this. We've known about Vicki's als since last Sept, but it's been just recently that I've become so depressed. I find it very difficult to give a lot of credence to the 'thoughts and suggestions' of anyone who has not lived through what I'm going through now. In the end, it's just going to be the way I personally am able to help myself... I've heard the term "take one day at a time", and have grown to detest it ! Each new day seems to be a brand new HELL, with this disease...

Can there possibly be anyone out there who can relate to this feeling of hopelessness I have, and help me get through it ? I've never been a stranger to prayer, but I'm starting to feel that the Lord is getting tired of hearing from me... but I don't want to give up.
 

andyvaughn

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Relate and understand to you

Oh Michael... I feel the pain of every work you write. My husband was just diagnosed 2/20/08, he has a bulbar onset, and is progressing very very rapidly. 2 weeks ago he did not have weakness in his legs, now he is shuffling to walk and fell once 2 days ago. He has also lost the use of his left pinky. His speech is garbled and he coughs every time he tries to drink water. We were at the doctor again yesterday, and just spent last night holding each other and crying. The grief and fear keeps hitting me over and over like a tidal wave.
That being said.. I will share with you what I am trying, to the very best of my ability, to do. Right now my husband can walk, can hold me, can eat. I spend every moment soaking up the love of his presence, knowing that it isn't forever. I do allow myself to cry when I need to, but try to spend as much time just enjoying what we have right now, and try to spend as little time as possible thinking about what is coming. We are also taking a trip, my parents have bought us a trip to jamaica, and we leave 6 days from now for a 10 day trip, leaving the teenagers at home.
I urge you Michael, enjoy the time you have now... none of us is promised tomorrow, however, you and I have been absolutely assured that our futures with our spouses are limited, and there isn't a thing we can do, so lets live today to the fullest, let's love our spouses and enjoy them today, and never let a moment slip by that we don't let them know how much they are loved and cherished.
I hadn't been checking into this forum much recently, too depressed, but I will check back for you.. you check back on me? Let's try to keep each other from missing the beauty of today.....
That being said, the lithium trial does look very promising... I am a registered nurse, my background is HIV research, .. I was able to read the research abstract on the lithium trial and the lithium did slow progression down in the mouse model. It also showed slowing in the human trial. Now, there were problems with the trial, the trial poplulation was very very small, the participants were not blinded, meaning those taking lithium knew they were, those who were not also knew... however, our doctor is going to start my husband on lithium as soon as we get back. At this point, if it doens't hurt anything, why not?
 

brooksea

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Michael,

I'm very sorry to hear that your wife's condition seems to be deteriorating so.

You are right to feel depressed. It is only natural. There are different stages that both of you will go through mentally with this disease.

As for the Lithium:

My husband has been on Lithium for 13 days now. He was unable to type with his left hand before Lithium (a lefty). Approx. 3 days ago he was no longer pecking with his index finger, but had the full use of his fingers to type. His cramping in the neck when yawning has now become almost non-existent. Yesterday he reported that the lump in the back of his throat had disappeared. I spoke to him on the cell phone and his voice was clearer and I was able to understand every word without him repeating himself. His appetite has increased and he gained 3 pounds in the first week on Lithium, which is good because he had lost 12 pounds in one month prior to Lithium. He says he does not feel as tired as before. He also is able to write a little more legibly now.

Please take the aforementioned for what you will. We do not want our hopes dashed, but any small improvement is better than none at all! Could this be mind over matter? Don't know.

Lithium Carbonate has been used to treat bi-polar patients for years, although the dosage levels used are much higher in those patients than for PALS. The dosage in the Italian Study (from which the Lithium excitement was born) is targeted to blood micro equivalents of .4-.8. Dosage to obtain this range should start out at 150mg Lithium twice daily. (I'm no doc, so please do your own research) My husbands blood was at .2 after first week on Lithium and he reamins on 150mg twice daily for now. You need to be closely monitored for blood levels each week when beginning Lithium treatment.

The cost for Lithium (by prescription) is for my husband $3.

As for prolonging life, don't know the answer to that question either. But I will say that since Lithium is so cheap and readily available, what do you have to lose? The people making a decision to try Lithium are PALS that are not willing to wait around for the research community to repeat the trial in mouse or man.

I wish you and your wife luck! I would suggest you bring the Lithium information from the above site to your doc. We have my husbands local GP coordinating with Emory Clinic in Atlanta. I'm sure you could arrange a similar scenario with your GP and ALS specialist.
 
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andyvaughn

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CJ - thank you for sharing what lithium is doing for your husband, that makes me feel so much hope today! My husband will start 2/24. She would start him now, but we are leaving for jamaica, and she felt it unsafe for him to be in a 3rd world country with no access to medical care newly on lithium... now that I read your post I almost want to cancel the trip so he can start now. I think he would disagree though. We have daydreamed for years about traveling alone (when the kids move out) .. kids are teens, so they are still at home, obviously, but a friend is staying and we are headed out for 10 days of jamaican sun... can't wait to get back and start the lithium... :)
 

Michael S

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Daphne
Thank you SO MUCH !

All of your support, and information on lithium has made this day one of the brightest days of my recent life! I WILL take copies of all of the info on that site to Birmingham with us next week, and become very insistant upon Vicki taking the lithium treatment. I've always believed that the Lord has given us EVERYTHING that we need to be happy... and this would certainly fit the bill !

I wasn't aware that it could be administered by our local GP. That's GREAT NEWS ! Ours'
LOVES us ! In fact, even before we go to BHM, I'll copy the info from that site and take it over to him, and give him a heads up of what's coming.

Should I assume that taking the lithium is a lifelong necessity? or is it only necessary to bring her up to acceptable levels in her body? I guess I'll learn all that by reading the info site... THIS IS EXCITING!

Hope you have a great trip to Jamaica! EVERYWHERE on the island will be a paradise for you BOTH! I wish I was going! The people of Jamaica are the most loving and gentle people you'll ever meet... Bring back some "Blue Mountain" coffee, if you're coffee drinkers... Appleton rum, if you're not... BOTH, if you like to PARTY! and here's something you'll ALWAYS cherish! Take along a managably sized boom box with a tape recorder in it, and lots of blank tapes. Record HOURS of local radio stations... You'll be able to enjoy that vacation for YEARS to come, in a way that few people can! (and here's something lotta folks don't know... and generally can't get here in the states... "Green cocoanut" milk is the WORLD's BEST "plugger-upper"...) Take a digital camera and take a MILLION pictures... ask EVERYONE to snap pictures of you both together... You'll LOVE this vacation! I'm so HAPPY for you BOTH!

Gotta get crackin'... Have lots of info to gather for our doctors visits! THANKS a MILLION!

Michael S
 

brooksea

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Andy and Michael:

Wish you all luck and keep us updated!
 

andyvaughn

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Irie :)

You get crackin on it Michael.. I wish you the best on your doc visit, and thanks for the kind words on Jamaica, we both love the island very very much, this is a return trip for us, and yes, Blue mountain coffee is quite a treat... neither of us drink alcohol, but we both love a virgin pina colada.... you have also inspired me with your writing, and just want to thank you. There probably aren't too many people in the world that know what you and I, and all of the other spouses on this forum are going thru, ... Again, I plan on checking in on you regularly, and you me please. When you are down I will help push you up and vice versa... you and I can help make a beautiful life for our spouses... let's make every day full of love and promise and most importantly hope.. LET"S GO LITHIUM..
ps... the lithium will be life long from my understanding, ... and is very cheap...
All the best to you, your beautiful wife, and a wonderful day...keep in touch...
 

sharonca

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12/2007
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Mentone
I've been on Lithium for a month now. And my progression has definitely slowed. Painful cramping in my legs has stopped. Painless cramping in my hands as all but stopped. The yawming and cramping in my neck has stopped. All this stopped after two weeks. I've had no side effects. Go Lithium. And I have being monitored by my GP at the approval of my neuro. And the hope that it provides is tremendous. God is good.

Sharonca #50 on the spreadsheet.
 

brooksea

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Hubby is # 111 aka: DaddyO

Great Sharon! A little hope goes a long way!
 

CindyM

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I am so glad you guys found each other!

I do have one small reminder for all our assistants to our PALS: taking care of any impaired patient is hard work, but yours is harder due to the emotional attachment. Please remember to take care of yourselves, too! :)
 

Michael S

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CALS
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Alabama
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Daphne
It's a DEAL, Andy!

We'll keep each other going as long as we can! Thanks for all of your concern and kindness

Michael S
 
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