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Tom S

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PALS
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05/2008
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I'm a newbie, so please excuse any faux pas or breaches of etiquette. I noticed something wrong with my muscles & reflexes about 18 months ago. Internist dismissed my concerns. Cramps and twitches got very much worse and had constant pain and weakness in forearms. Kept complaining. Saw neurologist for EMG tests last Aug. Said I was tired. Things got worse. Went back for 2nd round in Dec. Neuro said not enough to worry about, but you don't have ALS. Weaned myself off Baclofen for Christmas. Told everyone it wasn't serious. Assigned to physical therapy. PT said "you've got a LOT going on and none of it's good". After 4 wks was weaker than at start. Neck MRI. Some spinal cord compression but not enough to explain symptoms. Back to neuro. "somthing's going on." You want me to do another EMG? No - I want someone who can tell me what's going on.

More tests & biopsy from a REAL DOCTOR result in DX of MND 5/1/08. I've lost 30# since New Year's - 25# was muscle. Balance is poor, arm strength is about gone and legs are going. Have found braces for carpal tunnel help with arms. Don't know what to do about neck. I've tried to talk about the future with my wife. She will not talk about it. She wants to go to Italy this fall. Given the course of things, I don't see that happening. Should I humor her? This is so not easy. The prospect of being reduced to a purely existential existence is challenging. How hard to we push our condition on others? Do we not owe them something other than months of sacrifice followed by death?

What do we owe ourselves? I try to set achievable goals every day that require some effort beyond myself - something that exists, if only briefly outside myself. If I can do that, it's a good day regardless of anything else.

Thanks in advance for your input.
 

brooksea

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Tom-

Sorry about the diagnosed.

Are you being seen at an ALS Clinic? Has your wife gone with you to any appointments? If you go to a clinic, there should be a social worker that will visit with you and your wife. Also, the doctor I'm sure would be more than happy to explain the complications that can occur with ALS/MND. Like everyone here says, better to plan for the future rather than ignore it and be caught with your pants down!

If your wife is aware of all this, perhaps she is in denial and shock and ignoring the problem is her way of dealing with it presently.

As for your questions: "How hard to we push our condition on others? Do we not owe them something other than months of sacrifice followed by death?" I can only give you my point of view as a wife of PALS. I want to keep my husband alive as long as possible. I'm going to try to eek out every breath of life I can from him until he absolutely desires otherwise. Do you not think that your wife will be the same? If she were in your shoes would you not want to keep her around forever?

Sorry for all the questions. But here's another - How old are you and your wife and do you have children?

Good luck to you and I wish you well!
 

CindyM

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Hi Tom- I am sorry to learn about your DX.

I try to set achievable goals every day that require some effort beyond myself - something that exists, if only briefly outside myself. If I can do that, it's a good day regardless of anything else.

I love that statement. It does help to get outside our heads and outside our illness, don't you think? As for your wife, I'm thinking that she might need more time to adjust. this is a big shock. If you are able to travel - many PALS do, with careful planning- a trip to Italy would make a great memory for both of you. JMO. Cindy
 

Tom S

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Joined
May 29, 2008
Messages
12
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PALS
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05/2008
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IL
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CJ -

Yes, I'm going to an ALS clinic and my wife has been with. I'm 60, been married for 29 yrs with 1 daughter who just moved to NYC. I'm thinking that visiting her would be a good test run for a trip.
 

Tom S

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PALS
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05/2008
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US
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IL
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Geneva
Cindy - Kind words much appreciated! May as well pack as much in as possible.
 

Mark

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Hi again, Tom:

Between my voice recognition software and a website my initial message got lost. Did they tell you what type of motor neuron disease you have? It sounds very similar to my experience with a variant of progressive muscular atrophy affecting mostly my upper body. I have lost about 20 pounds over perhaps a year or two. I was struck with a rapidly you have lost a great deal of weight. I tried Rilutek but I was not able to see any help from this agent. After the Italian study came out about lithium in ALS I began on this but it is hard to say whether it is having any effect. This whole area of neurology is full of mystery and uncertainty. I wish you well.

Mark
 

fiddleplayer51

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03/2008
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VA
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Tom,
Your post appeared twice and I reponded to you under the other post (on page 2 of this forum). It looks as if most people are responding under this post so here's my response again:

Hello Tom,
Welcome to the bewildering world of NMD! I'm so sorry about your diagnosis, noticeable decline, and the constant pain. The pain must be especially hard to deal with and certainly contemplating being reduced to a purely existential state is the biggest challenge of all.
Amazingly though, the cruelties, challenges, robbing of functionality, etc. that this disease throws at PALS has the potential to teach both PALS and CALS to enter a whole new dimension in their lives which offers a much more reflective way of daily living devoid of some of the superficialities that keep us captive and blind us to what's really important.
I hope your wife can soon come to terms with your illness and be there with you in the truest sense. She sounds as if she's fighting your illness as much as she can which will ultimately make it so much more difficult for her. You're really going to need her and I hope she soon can enter the world you're living in now and be there for you.
I thought that the words written above by Robert Mathis were so helpful and inspiring where he said "to keep going, I have found it very helpful to make plans for the future and to work toward fulfilling those plans. ALS is a terrifying disease if you spend too much time thinking about it. So I focus on the things that I can do and try to be as positive as I can." (Thanks Robert!) I hope you can heed them. You sound as if you are able to have a similar outlook when you say "I try to set achievable goals every day that require some effort beyond myself - something that exists, if only briefly outside myself. If I can do that, it's a good day regardless of anything else."
My PALS husband is really experiencing some significant losses now (speech, walking ability, swallowing ability) which are so difficult to come to terms with. I would hope he could heed those words too.
All the best to you and be sure and keep participating in this forum. So many are travelling this journey right now and we can all keep in touch and help each other through our daily struggle.
Peace,
Jane
 

Tom S

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Joined
May 29, 2008
Messages
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PALS
Diagnosis
05/2008
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US
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IL
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Geneva
Mark,

The exact variety has not been determined, but PMA lines up with my symptoms (other than the pain). Sorry to hear that the lithium is not having a noticeable effect. What was the process you had to go thru to get is? I think we know a lot less than we think we do about this incredibly complex machine we inhabit. There are a lot of theories bouncing around out there. One might even be right!

Hang in there.
Tom
 
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