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vmd

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First, let me thank those who have been kind enough to send me emails and the others who have responded to my queries. I don't feel alone.

I tought I would update you on my situation and ask for suggestions as to who to talk to first. Besides the symptoms, which I have described before: asymmetrical weakness (mostly right side), fasciculations (mostly on the right side), atrophy, stiffness, muscle fatigue etc., I am now experiencing some throat difficulties. I am starting to experience some swallowing issues, I have noticed that I experience some minor pain when I swallow and also dull sensations of pain in the throat area. I reads on another site that pain when swallowing could also be associated with bulbar involved ALS. I am now sensing twitches on my face (neck, cheeks, lips). What's next, the tongue? Is it true that tongue fasciculations are a certain sign of ALS?

I am finding it difficult to carry on daily activites. I can't even comb my hair without experiencing the fatigue on my arm and I have to stop before I can go on. Just the act of moving a cart with a TV and VCR from one room to another exhausts me! Since I live alone, I feel as though I am looking at the future and it does not look good.

My primary question is who to talk to who will have the most information about ALS and what I need to do in order to prepare for the worst. Other questions are financial in nature ( as you know I am responsible for financial support for my ex and my daughter and they rely on these monies for their survival). Some questions are more personal, how does an ALS patient manage when they live alone? I have called the local representative for the ALS support group here in Eastern Washington. Is this the best contact? Are there others I need to talk to? Ideally, I want to minimize the number of people I need to talk to because I am experiencing extreme fatigue on a daily basis and I seem to have only enough energy to do so much. Thank you for your caring.
 

alspatient

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PALS
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chennai
Have you read this manual?

I found this very useful. I had an extensive collection of articles and even exercises that need a second person to assist the PALS. But I lost it when my hard disc crashed. I don't know if you have read this one already. In case you have, then I am sorry that I can't help further sitting way back in India.
http://www.als.ca/manual-whatisals.shtml
 

Jamiet

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VMD,

it's difficult and you need to sit with your ex for sure. It sounds as if this is moving quick.

I see you ahve contacted the ALs assn, but you need to contact the MDA also, They are great, they have people who can help and answer alot of your questions.

The MDA knows about ALS and i'm about sure, that, you are not the first who has the situation you are in and they have some solutions for you.

Please ask anything else you need. I've got a 6 year old boy and 11 month old girl, so i understand where you are with the little one.

God Bless you....

Rgds,

Jamie
 

Jamiet

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VMD and everyone else.


Also, just a note, my friend in the ALS assn also told me, that the ALS assn and the MDA don't work closely together all the time, so you need to contact both.

rgds,

jamie
 

Frizzel

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Sounds like a tight spot.

Good morning VMD,

Are you connected with an ALS clinic? If not, may I suggest finding one. THere is an ALS clinic at Providence Hospital, in Portland, Oregon...Dr. Gosslin is the neuro's name. There is also another one in Seattle. You can find it on the web.

This forum gives lots of experience, strength and ideas. Still connecting into a support group or clinic where you can been seen and talked with is also vital.

My disease is mainly on my left side with both leg involvement. I actually just cut my hair really short because I wanted to spend my energy doing other things than fiddling with my hair. Earrings make the outfit is my new motto. Even necklaces that are heavy now bother my neck. I also keep a scarf on at all times to keep my neck warm. Just when I think I have one adjustment down pat, another ones surfaces.

This is a horrible disease...that doesn't mean I have to have a horrible life. Because I still have to work from my computer and cell phone I am already making plans in how to transition once I can no longer speak. Already, my voice is straining when I call our dogs in from the property at night.

Search the web for ideas, too. I have gotten many ideas how to prepare from the web.

One step at a time....Frizzel
 

vmd

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alspatient, Jamie, and Frizzel:

Thank you so much for your advice. You are certainly very kind people.
 

vmd

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Frizzel:

Great resource. Thank you and it has been bookmarked!
 

Frizzel

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Annmarie's suggestion

I agree with you Annmarie...getting with a good doctor or clinic is soooooooo important! We can NOT self diagnose a MND... especially ALS.

I have been diagnosed with Primary Lateral Sclerosis and now the clinic is reevaluating the other three neurologists diagnosis to possibly be ALS. Once ALS is said, that's another huge adjustment so they are being VERY careful with what is said from here on out.

Whether it is PLS or ALS I'm taking one day at a time. Just got back in from watering the plants and cleaning out the bird bath on our back deck. I'm still livin and grateful for today. The sun is out and I got out to greet it.

We can live with our disease or die with it. The choice is oiurs.
 

Rhonda

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Hey VMD,
Have you signed up for SSD, because your child can receive a check also. I hope everything works out for you. This is one ugly disease to have to battle alone. Just know we are here to listen and help if we can. Rhonda
 

vmd

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annmarie:

Thank you for your positive thoughts.

Frizell wrote:

"We can live with our disease or die with it. The choice is ours."

Thanks. You are quite the philosopher!:)
 
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