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Dear members,
My father was diagnosed with ALS a few days back which came as a big shock. I had vaguely heard of this disease but never thought I would have to deal with it some day. I am so depressed right now after reading about what it does to the patient in the later stages. My father seems to be downplaying it right now as he is generally a positive person. He wants me to just get over it and leave it to God. Currently he has speech difficulties (which is what took him to the doc) and sometimes his thumb doesn't have enough strength to do tasks like opening a lock. Also he has lost some weight in past few weeks and his limbs seem to be a little thinner. I was shocked to see how these symptoms match the ones mentioned in ALS websites. For now, he seems to be doing fine as he can walk a good distance and does all of his activities.

This forums looks like a good place to look for support. I am quite confused as to how to cope with this news. Should I look for second opinion, do more tests?. He has done EMG which turned out positive. Are there other tests to rule out other diseases? I would really appreciate if someone can give me advice on what I should do or expect in the weeks to come. I love my father and want him to live long enough. What is the typical rate of progression? How long before the patient cannot live on his own? Please, if somebody can give me some advice and consolation I would be grateful.

Thank you.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi grp. Sorry you are here but glad you found us. First of all where are you from? Whether it is in the U.S or what province in Canada or another country makes a difference in the advice that would be given. First of all don't give up hope and try to remain positive. A lot of us live longer than expected and attitude helps. We always suggest a second opinion especially from a Neurologist that see's a lot of ALS cases. Try to get into an ALS Clinic if possible. Register with your local ALS Society. There is no way to guess at progression. You will hear many times that we are all different. Similar but different : people change at different rates. Some will go downhill for a bit then stay the same for a period of time and them may slide again. There are no definites in this disease. You might want to discuss Lyme testing an MRI and other blood work with the Neuro. Hope this helps. Take care. I know it's hard but try not to worry.
Al.
 

Carol Deboer

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Joined
May 7, 2003
Messages
343
Hi There,

Welcome, and sorry that you are here too. As Al said, get a second opinion. It does not hurt and test for Lymes. The progression is different in each individual case. For anyone of us to give you a definitive progression rate would be unfair. My Henry had it for 8 years and did well until basically the last year of his life. I think that Henry leveled off at about year 2-5 and lived very healthy and active. Keep your spirits up and do get another docs opinion. Keep us posted and God Bless.

Carol
 

tara2k

New member
Joined
Mar 19, 2006
Messages
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Child of ALS patient

Sorry, to hear about your father. The initial shock of the ALS diagnosis is so overwhelming. My father was diagnosed in 10/05. My best advise as a child on an ALS patient is to become educated. As other posts have stated it is so different for everyone.
With every dark cloud there is still a bright spot of hope. Try to remain postive.
 
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geogood

Member
Joined
Jun 16, 2005
Messages
18
Reason
PALS
Diagnosis
11/1991
Country
CA
State
ON
City
Hamilton
MND Society in India

Has your Father tried them?

Motor Neurone Disease Association of India (MNDAI)
Nicky Bhagat

40 Kolagarh Road, Street No 5, Dehradun, UN 248001, India
Tel: +91 135 2754487
Fax: +91 135 623675

Email: [email protected] [email protected] (Nicky Bhagat)
 
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helper

Member
Joined
Mar 3, 2006
Messages
25
my mil was diagnosed 11/05 and we're learning things everyday. I'm a sahm and i'm constantly trying to find things to help us. This group is wonderful, i've gotten so much good advice and ideas while reading here (was reading much longer then i've actually been a member :) )
We've been dealing with all the different symptoms and now concentrating on her mental state....she says shes fine but we know different...a once very active, very social woman now sits at home alone.

Anyone have any suggestions about how to help her get past her pride? this is keeping her from seeing people who love and care for her and don't care if she drools or needs to write everything down to talk. Also, we can't believe she refuses to use a walker or cane even to help her walk (she is having a hard time lifting her left food and has almost fallen a few times)...she says that its for 'old people'(she's 74!, lol)




Jodie
 

Granny

Distinguished member
Joined
May 18, 2005
Messages
205
Hi Jodie,
That's a hard one, trying to get past your pride! I know, I had to do it. I also have lost my speech and I drool a lot, but I still go places and see my firends.
If you can impress on your Mom how much good it does her friends and loved ones to see her out and about, no matter what she has to do to get there. I know that I kind of hid for awhile, but now I get so many hugs and smiles and they mean so much to me, but also helps my family to cope better.
Maybe take little steps at a time, have one friend in. I find movies a good place to go, because I cannot eat and so many social things involve eating, but at the movies, it does not matter that you do not get the popcorn.
I am a bit younger than your Mom, only 63! But, if I need a walker to get out and see the people I care about, I will do it. Hope this helps your Mom to know that she is not alone in this struggle. Encourage her to get out and make the most of each day.
Hugs and prayers,
Leah
 

wewillbeatthis

Distinguished member
Joined
Aug 10, 2005
Messages
185
GRP,

I am sorry that you have to deal with this.. I can say that if you have to deal with it this is the site to have found. I too was a mess when dad was diagnosed with this disease. Although I had a clue that it was this or something like it for about two years now dad was officially diag. on 8/05. Dad has limb onset he takes Rilutek, baclofen, many vitamins, exercises on his own and goes to PT, and remains psoitive most days. The combination of all of this helps him a great deal. I agree with AL this disease is so different in everyone and even different in PALS from week to week. Last week dad was real happy and upbeat, walking well, a great deal of energy, and this week he is down, tired, and speaking a little horse and low. Next week he will be back to being good again. I guess just like anything else he has good and bad days. With this being said you too will have good and bad days watching them go through this.

The best thing to do for yourself and for your dad is educate yourself, be aware of your options, products. Dad is going to be moving in with me and my hubby to be and we are all real excited about it. Dad really does not need to cause he is able to do all the things he has always done just a little slower. However, we feel that on the days he is around everyone and talking and having fun he is happier then when he is alone and thinking... Mind over matter is major with this disease... Think positive and teach your dad to do the same. Remember that this disease is getting a great deal of attention and a cure is around the corner....

Come to this place to vent, ask questions, or share experiences with us. It is a great place...

Jen
 

helper

Member
Joined
Mar 3, 2006
Messages
25
Thank you Leah for the advice..I'm glad to hear that you're not letting this stop you from seeing your friends and family. I had a talk with my mother in law on this weekend and told her that when she moves in with us she'll be spending lots of time with the ones that love and care for her. When I asked her why she didn't use her walker or cane she wrote 'i don't want to have to rely on it' and then she wrote 'pride'. While i was visiting with her some cousins came over and we played some board games..it was great to hear her laugh and see her smiles...I hope this is a start...

Jodie
 
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