Old 12-27-2006, 04:29 PM #1 (permalink)
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Default A plea for help, info, anything really.

My mom is going to turn 50 in a few weeks.
In 2003 she began having "spells" where she would pass out. This was followed by weakness on her right side... Which caused her to start scouring the markets for fatter pens, cause she just couldnt grasp the regular ones.
She began going to her regular doctor, and he proceeded to name and diagnose everything know to man.
Finally, at the end of 2004, he referred her to a nuero doc, and that DR referred her to a more localized specialist, they were leaning towards MS at the end of 04, beginning of 05.

05 brought a new doctor, one who would through out some new diagnosis, some new painful test... and more cluelessness.
Finally she was referred to the physicians group she is seeing now.
Primarily, they diagnosed Lou Gehrigs disease, but through a new battery of tests, ruled it out, and said that it could only be ALS, because they had ruled EVERYTHING ELSE OUT!

What is this? We dont know what it is, we just know the 500 things it cant possibly be... I have read on countless websites that diagnosis of ALS is diagnosis by exclusion. Her doctors tell me there is this study going on up north somewhere, and they are trying to get her in, not cause it will help her, but because it could help someone else, down the line.

My mother is fiercely independent, but she is slowly losing the battle against whatever it is attacking her. My brother is 18, with a baby, and my sister is too stuck in herself to help. So its my mom, and me.

Taking care of mom, helping mom, its all the same thing, its something I have to do, I love her. I cant leave it up to strangers.

Her independent streak causes no end to problems tho.
I have to make it a point to call her everyday, cause if she needs something, she wont tell me. (I found this out after she hadnt eaten in a day and a half cause she wouldnt tell me she needed groceries)
She wont let me stay with her, or anyone else for that reason. She come live with me... and anytime I call her, and she doesnt answer, I drive at breakneck speeds the 20 miles from her place to mine, to make sure shes ok. Which was good two weekends ago, she had fallen and broken her hand...

She is spastic, and cant maintain balance, chokes on food, and on drink, and has very slurred speech.
Her decline seems rapid to me. I thought the end was soon cause of all that was occurring.
Her doctors have been playing musical meds too... Most recent changes was the reintroduction of baclafin(?) when she was getting to where she couldnt walk, or sleep, or much of anything else.

Can someone give it to me straight?
What else do i have to 'look forward' to?
Is there anyone anywhere near me going thru something similar that I could talk to.
This strained my last relationship past the breaking point, and I dont dare bring anyone else into my life at this point.... So its just me and her here....
Help.
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Old 12-27-2006, 04:49 PM #2 (permalink)
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Seth1977,

Sorry to hear about all the difficulity with getting a diagnosed from your mom's doctors.
I know it is very frustrating and also scary. Your mom is very lucky to have you. Give her time and patience, I think she will soon realize that she will need to give up some of that independence but certainly not all. That is who she is. I don't believe one can be forced into accepting help. She will need to see this for herself. You will need help. You can't do it all yourself. Helping Hands for ALS is a program in this area (So. Calif.)
that provides a few hours a week of practical help for people with ALS (PALS). This is something you might want to check into.

Have you look for the local ALS chapter in your area? They have great support group meetings and usually have a "loan closet" with items you can borrow to help with everyday living. You say she chokes on food and liquid. Be very careful that she does not aspirate the food or drink - that would be serious.

There are many helpful and kind people on this forum who will be able to give you great suggestions and support. Continue asking the questions.

My best to you and your mom.
Jeanne
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Old 12-27-2006, 06:48 PM #3 (permalink)
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Hi Seth. Your Mom is lucky to have you in her life! She did a fine job of raising such a caring individual and you are to be commended for wanting to give back. Unfortunately you both have a big learning curve ahead of you but fortunately you landed in the best spot on the internet to learn what to expect. No subject is out of bounds here and no question is left unanswered. There are people on this forum who have had Lou Gerig's (ALS) for 10 to 15 years and if you use the search feature on the links above you and your Mom will probably get most of the answers you seek. If not, ask us!

One thing I want to advise is to not forget to take care of yourself. Your life is about to become complicated. You can only help Mom if you are rested and in good spirits. Please keep in touch and let us know how things are developing. Regards, Cindy
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Old 12-27-2006, 06:53 PM #4 (permalink)
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Hi Seth,

Unfortunately ALS is a disease where they must eliminate other possibilities to get a diagnosis. There is no direct test for ALS, though they may be close. Thatís just the way it is.

Iíll tell you straight up, your mom will need help, whether itís homecare, physio, occupational therapy and so on. She may at some point even have to go into a continuing care facility. This is the reality we all face, all of us with ALS. Is it fair? Hell no! But we donít control what is fair or not, we can only adapt. We control how we are going to react to our situations.

I, like your Mom, was also fiercely independent. Needing help for the most elementary task was a foreign concept that I chose to ignore. After a while of falling, bumping my head, yelling at my wife and several other things Iím not too proud of, I finally turned some control over to others. It wasnít easy, but Iím glad I did it. There are battalions of people who are trained in helping PALS, we just need to do it!

She will also need it not just for her, but for your peace of mind too. You CANNOT take all this on yourself. Believe me, this is experience from seeing my wife try to take it all on. It will all end in tears.

My advice would be to check out all the available services in your area, talk to the ALS Society, have phone numbers and everything ready to go so if your Mom decides to try a service then youíre ready. Your Mom doesnít have to know what youíre doing, why add to her stress?

Youíre Mom can still maintain a level of independence, but we all need a little help now and againÖno great sin in that!

I tried to be upfront as possible, hope this helped some! Good luck!
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