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andyvaughn

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Hi all, I can't believe it has only been 3 months since I first visited this forum. My how things have changed... I had told you that we were trying to get a second opinion. We saw Dr. Graves/UCLA today. He confirmed what my husband and I already knew, that Jim certainly has ALS. His progression has been rapid with atrophy, and loss of function, but even with that his strength still tests quite well. He started with slurred speech in January, moved to fasciculations of his left arm right after that, then his left leg, now the fasciculations are starting in his right arm. I am not sure I understand how he can have only a small loss of strength but so much loss of function? Of course, there is much I don't understand about this.. perhaps I never will. But, I really am writing to thank you all, it was here that you encouraged me to RUN to the nearest neurologist for a diagnosis. You all have been such a source of inspiration. I feel like I have come a million miles from January until today.. and in many ways have. Thanks to you all..
Andrea - wife of PALS Jim.
 

CindyM

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THank you for your kind words, Andy. I am sorry to hear about the DX, though. Wish it could be different but as our wiser PALS say, it has to be somebody. I am just sorry that it is your family. Hugs, Cindy
 

Icanmanz

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Andrea, Hi! Thanks for letting us know about Jim's update, even though I am saddened to hear of his diagnosis. That is what exactly what happened here. My son had these symptoms for a while, and he was holding back on going to see a doc, hoping it would go away. Well, it never wnet away, it only got worse. By the time he decided to go to see a doc, we were fearing this damn disease, and Als it turned out to be. What a nightmare. I have been through so much, and here I am, almost a year later. I can say I have come a long way, and our Father have restored almost everything for me. Thanks to Him. I still miss my son, but am counting on meeting again on the other side. He (my son) is alongside of me every day, I know he is. May God bless you and Jim. Keep us posted.

Irma
 

Lorie

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Andrea

That is what we are here for, one another. We can understand what you and your husband is going through, when no one else can. Sorry he has to experience this.

Lorie
 

sharonca

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Andrea - Sorry to hear of Jim's diagnosis. You are in good hands with Dr. Graves. He's my neuro and every visit I feel like I'm the only patient in the place - all the people are so comforting. Dr. Graves has been very encouraging of my use of Lithium and impressed with my lack of progress.

I'll keep you in my thoughts and prayers.

Sharonca
 

andyvaughn

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Thank you for all of your kind words. Hearing it the second time wasn't nearly as horrifying as it was the first time we heard it in February. We went for a second opinion just because it seemed to be the appropriate thing to do. Of course, we hoped that Dr. Graves would find something else wrong, but he did not. We did appreciate Dr. Graves and his team, but our first Neuro is Dr. Abi (her real last name is Muthukumaran) at Cedars Sinai ALS comprehensive center. We will probably actually see both doctors. Dr. Graves has more in terms of research, but my husband and I both really love the team at Cedars Sinai, in fact, most of the therapists work at both centers...
So, on with the business of living life today. I hate what this disease is doing to us - to my husband, but am so grateful that we have what we have been blessed with for today...
Much love to all
Andrea.
 

fiddleplayer51

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Hello Andrea,
Sounds as if you've had a discouraging day, but also a definitive day which perhaps can bring more certitude to next steps to take. Having the diagnosis verified by Dr. Graves may not be what you ultimately hoped for, but it's also not helpful to be holding onto "maybe it's something else". Now the path you must take is a bit clearer and you can forge ahead more deliberately. I'm sorry it didn't turn out differently. It must have been a very tiring day. I hope you get some good rest.
I think the loss of function while still retaining strength is that function requires deliberate/precise action and controlled movement. As strength deteriorates, the ability to make deliberate, precise, controlled movements deteriorates as well. Since function is more a measure of fine motor ability, its deterioration is more rapid than loss of just gross motor strength alone.
My husband goes to Charlottesville for his second opinion on Monday. He is noticably weaker and his speech continues to worsen. He is beginning to have some falls now. It's so hard to see this happening. His nasal speech began in January and the slurring started in February.
Take care and all the best with all you are facing now.
Jane
 

caroliney

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New ALS Gene Paves the Way

Andrea,

Was visiting the ALS.org site and thought I would share this bit of news. You can go to the www.alsa.org and view this for yourself if you like.

NEW ALS GENE PAVES THE WAY FOR BETTER UNDERSTANDING, NEW TREATMENTS
BY RICHARD ROBINSON, SCIENCE WRITER FEB. 28, 2008

TARDBP (TDP-43) IN THE NEWS - NEW GENES LINKED TO ALS. CENTER STAGE AS A POTENTIAL CAUSE OF MOTOR DEGENERATION.

Never give up hope with this dreadful disease, as a cure may be just around the corner. It is so hard to imagine that since 1869, this disease has been around and still it takes so many of our loved ones. It is a complex disease that is for sure and no one has found what exactly is the cause so it can be treated.

Take care of your loved one and yourself.

Hugs,
Caroliney
 

andyvaughn

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Jane.. sounds like you and I are on parallel paths...My husband started slurring words in January, his left arm started right after, then his left leg, now to his right arm. What a journey this is huh? What you say about fine/gross motor function makes sense..
Jim is still walking okay, though with an affected gait, our next step is the speech augmentation device, going for our eval on that 5/5/08.
I hope your second opinion goes smoothly. I can tell you that it isn't nearly as hard to hear it on the second time...
Andrea - wife of PALS Jim.
 

fiddleplayer51

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Andrea,
Indeed it sounds as if we're on parallel paths. My husband (John) has had two appointments with a speech pathologist here in Harrisonburg. He is helping him with breathing right now. Yesterday he gave him an incentive spirometer to encourage deep inhalations and also a peak flow meter to encourage full exhalations. He describes his approach as teaching compensatory methods of speaking as opposed to restorative or maintenance of speech. With ALS you're not going to restore speech and you really can't maintain speech because the muscles are deteriorating irreversibly. However, he says you can learn to compensate for the losses. I think that's an interesting way of looking at it. He said we need to get going on augmentation devices while there's still some speech left. Otherwise the PALS becomes locked-in with no means of communication. In Charlottesville we'll find out about augmentation devices for speaking.
Things seem to be moving so quickly now. We're constantly trying to stay one step ahead of the process.
I am so grateful to this forum for the understanding and support it gives. I can't imagine where I'd be emotionally etc. if I did not have this forum to participate in. What an amazing community of caring people. I think it's mind-boggling how many people are affected by this disease.
Take care and as always, one day at a time.
Blessings,
Jane
 

fiddleplayer51

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Ditto on "confirming what we already knew." We've just come from the ALS clinic in Charlottesville VA and it's official now: my husband indeed has bulbar onset ALS. For me it was just as hard to hear it the second time. At least we're hearing it this time after having a chance to do alot of reading online and, for me, after reading alot on this forum and participating here.
Thank you all for your openness in sharing your fears, hopes, tips for coping, tips for handling the many adjustments that we are just having to start to make.
I hope I can be as helpful to you as you have been to me.
Again, thank each and every one of you for taking the time to respond to posts. Sharing the road is certainly more tolerable than going it alone.
All the best,
Jane
 

andyvaughn

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Jane, I am so sorry it wasn't something else. I had hoped you would come back with another diagnosis, but I guess the good, if there is any, at least for me, has been that now I know, and can concentrate my efforts on living in the now, and trying for the future and hope as best I can...
Wishing you well
Andrea
 

CindyM

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I am sorry too, Jane. It is never good when a new PAL is diagnosed.
 

fiddleplayer51

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Thanks for your kind words, Cindy and Andrea. I know I'm in good company here and that being able to laugh at ourselves hasn't ended. I've just been reviewing some of your old posts, Cindy, and came across your thread called "Attitude" started 12/18/2006. Your description of visiting your daughter in Denver and your trip to the candy factory and mall was hilarious! And then poor Al told his story about falling and it took 4 people to get him up. (His story sounded painful though!) And Liz said her sons probably wouldn't even notice if she fell. I'm still laughing about MtPockets' addition to that thread: "Sounds very familiar everyone. You know it's bad when there are several people in your home talking, and your legs give away and you fall on the floor, and everyone keeps talking and walking around you.
Hey, YALL, I'm down here, could you give me some help? Oh just a minute I have got something in the oven and the other has to go to the bathroom, meanwhile my dog is licking me like a lollipop. Whew, she stinks, I've got to get someone to give the poor thing a bath."
That made my day! It's nice to think we can still laugh in the midst of our tribulations.
Thanks everyone! Let's keep truckin' and livin'!
Jane
 

CindyM

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You are so right, Jane. When my local docs first started talking about ALS I had to go look it up. I did not know what they were saying. But I found this site and some of those old threads you mentioned and decided that if worse comes to worse, I will be able to cope like everybody else does.

Everybody on this board ROCKS!
 
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