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michael0314

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Joined
Jan 22, 2011
Messages
207
Reason
PALS
Diagnosis
01/2011
Country
US
State
Ks
City
.
Just found out yesterday almost certain positive diagnosis. I don't know what to expect, feeling a little overtwhelmed with gathering information. Have another appointment in a couple weeks with neurologist. I'm sure she will have answers. Have a pretty good attitude trying to tell myself and family in some ways it's a blessing because we get a chance to end things with no regrets. Rather than someone who passes suddenly. The flip side of this is I'm very scared of living trapped inside my body with out any communication ability. Nothing but my thoughts for months. Sorry rambling a little bit. I'm 46 have speech problems already, foot drop and right side weakness. Any ideas of time line would be appreciated. I do understand it varies widely but some idea of what to expect would be great.
 
Michael, I am so sorry about your diagnosis. My husband got the diagnosis last year at 48. There is really no good time, but it is hard being "young" with children at home. Unfortunately, there is no real time line. The palliative care doctor told us last week that the best guess is based on your breathing capacity. My husband had an FVC (forced vital capacity) of 125% last January, 80% in May, 55% in August and 40% last week. Since his drop no longer follows a pattern, the doctors won't give him a timeline.

Any questions you have can be answered here. The PALS on this site are fabulous, sympathetic and candid. The CALS on the site will give you some perspective from the other side. You are not alone in this.
 
Michael,

Sorry to hear that you're joining our club here. It's a real kick in the jewels, isn't it?

As to giving you some kind of timeline for progression, the answer is "It depends". It depends on what measures you are willing to take and which ones you refuse. It depends on how well you comply with your doctor's advice on the measures you do accept and how soon you put them into effect when your doctor recommends them. But mostly, it depends on how much of a fight you are willing to put up and how many adaptations you are willing to make between your ears to take pleasure in the "good" days and to simply survive the horrible days. If you don't want to go on, believe me, your body will do its best to oblige you.

Hang around with us a while, ask your questions, and learn how to search out old posts on this site. Also, get yourself registered with MDA (yep, you're one of Jerry's Kids now) and the ALS Association (ALSA) as soon as you can, because those two organization have lots of resources, informational and otherwise (i.e., loan closets for equipment).

Sorry you have to be here, but welcome anyway.
 
Hi Michael,
I'm so very sorry for your diagnosis. I have no timeline to give you, either, but when you see your Neurologist again, ask questions about an ALS Clinic where you are able to see all the professionals who can help you.

Your positive attitude is wonderful, and I hope you can keep it--but Michael, grieving for loss is also okay, and fear is natural. The key is not allowing it to move in and make a home in your mind. Be sure and tell your doctor if you are struggling at some point; they realize it's normal.

There is a lot of information here on this forum. The blue bar above has the search (topics, words), the FAQ for helping you find your way around. Click onto any underlined blue word or phrase found elsewhere, as well as on people's names in blue.

I'll be keeping you in prayer, Michael.

Ann
 
Hi Michael,

I know you'll find lots of help and support here. Great advice already about MDA and ALSA and I found my first clinic visit invaluable in providing info on what to do now. While I am mostly positive, I have my moments of fear and anger as well, all we can do is keep on with life, even if it's different from what we imagined. Thoughts and prayers for you and your family.
 
Dear Michael,
Welcome to our family. Do not think so far ahead about potential losses.
There are plenty of useful devices and adaptations to help with mobility
and communication. You are not alone.
Blessings, Pat
 
My husband was 47 when he was diagnosed. He's still walking, albeit shaky going. He cannot be understood, except by friends and family (and that's with repeating). He has lost the function of his left arm and hand and the right side is almost useless. His neck muscles and shoulder muscles are gone. But, he's still with us at the age of 52.

It's MOST important to keep your weight on, as it is thought that pALS (people with ALS) have a higher metabolism. So, eat all the high fat stuff you want! Eat it NOW and keep the weight on! Once you start losing it, you will have much difficulty regaining.

Welcome to the forum, but sorry about the ALS diagnosis.
 
Sorry for your diagnosis. It is obviously a shock but you are correct you get the opportunity to come to grips with your mortality and live with no regrets. You will find a lot of support and people here trying to help answer your questions. Just remember the sun will rise tomorrow and so will you. Stay strong and keep the faith!
 
Michael, when I first found my husband has Als, I googled and read a few articles and cases and freaked out. I imagine all that happening to my husband within months. Here he is, almost a year later, his speech has deteriorated to where I can hardly understand him but he is able to walk though he walks slowly. He has use of his legs and hands though his hands are getting stiff. His symptoms started at least two years before diagnosis. With time, I slowly settled into our new normal and realized as - a known fact, every case is different.
 
Hi Michael, I was diagnosed last summer. I have been unable to speak for almost six months now. I am so sorry for your situation. I don't believe that I have come to grips with it yet. Don't be disappointed if you don't get the answers that you are seeking. I really don't believe that they know enough about it to answer them. I am learning that it is different for all of us. There just doesn't seem to be any set pattern. I am trying to learn to take each day as it comes and be grateful that I have it.
 
Hope for the best, but be prepared for the worst. Whenever possible, make sure you have the equipment on hand BEFORE you need it. Don't wait UNTIL you need it. Get a device to help you with the loss of speech NOW. Bank your voice if you can. Have a walker in the house. Have a transport wheelchair in the house. (Call ALSA and MDA - they probably have these in the closet.) If you notice new symptoms, ask questions and get the PALS here to suggest needed equipment. That has saved us more times than I can say over the last year. ALS was mentioned to us in passing exactly one year ago. It can move VERY fast. Be prepared. It can move VERY slow. Enjoy that time if you get it.
 
Thank you all for your responses I do feel very appreciative for you all to take the time to respond. I believe this was a good choice to join this forum. I will take your advices and move forward with living in the day. Thanks again
 
Michael, welcome to this club that nobody wants to join. It's an invaluable source of support for me. I'm three months past diagnosis and still struggle with accepting the realities although I am trying to be proactive and positive. Good luck to you as you start down this road. We're all here for each other.
Sue
 
Welcome to the forum family Michael. Sorry that you have a reason to be here but we are happy to have you.
 
Hi Michael,

I started having symptoms about one year ago in Feb. diagnosed in August with limb onset and it is moving at a quick pace in me. The ALSA has been a huge blessing to me as they always are supplying me with the things I need before I have to depend on them.

Enjoy life, live in denial as long as you can because one day you will wake up and won't be able to deny it any longer. This forum is a great source of inspiration and support and we are here for you.
 
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