Dads ALS Journey and Story

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T

Thane

Well-known member
NB: this post hasn't been edited for spelling, or meaningless rambling so I apoligise forth with..

seeming this post is about someone who has ALS, I'll post the things I have noticed with my dad, and his progression: I am posting his blog page too so I hope he wont mind:



anyway, I asked my dad today the first things he noticed when he might have thought something was wrong, and he said that he started walking really slow, not like he was walking slow on purpose, but he could move his legs very well, and this he recalls was over the space of a week or so.

He also said he was 'throwing' his left foot about, dragging it and generally it wasn't behaving, I asked him about the twitching and when he noticed that, and he didn't notice it until he went into hospital for testing some 4 months after he initially went to the doctor about the problems he was having, the doctor, before sending him to hospital got a splint made up for him to help his walking because he had developed a definate permanent limp.

There was no pain associated with his limping or eventual twitching, he couldn't feel a thing, which I think is nothing like what anyone here experiences, we have pain and sore knees and sore ankles e.t.c my father only gets pain when his legs/arms/toes/fingers cramp up, but the medication he takes helps lessen them.

The first time I went to see him (he lives 5 hours drive away) one of his legs was very badly atrophed (sp) like, it wasn't "oh yeah i can see it's just a wee bit smaller" it was really very much smaller and slender than his other leg, another thing is his balance, he has started having wee falls, and trips, so if any of us were worried about having ALS...if you are not experiencing these things then please dont worry, if you had ALS you would know about it alright, thats what my father told me yesterday.

more little things that he has demonstrated; in the early stages (a month or so after i got the phone call that he was dx'ed with ALS) he couldn't lift his right foot off the ground, no matter how he tried, he has to have a grandad nap in the afternoon because he said that even making a cup of tea will be enough to make him have to sleep for a few hours, thats how tiring he gets, yet he sits on his laptop, typing when he can, when his fingers allow him, telling his friends what is happening to him.

so from the looks of it no one here has any problems like this, and I know people are still going to worry, hell reading the bit:

after the twitching begins within 3 months u are gonna notice something bad happening and after 6 months u would have a hard time walking

because my twitching has only been going on a few months heh....

but the doc assures me I am just crazy and anxiety is getting the better of me, he stated that beleiving you are sick will actually physcially manifest a lot of times with the symptoms you think you have..

so go and look at his website, he is an insipration for us all, even though he is on a different journey to us, we can all see we have a very different set of problems so there is nothing to worry about at all really..
 
Shelley, that is so weird you say that. This past summer I went to a rheumatologist (sp?) to rule out Fibro. She asked me if I had any twitching in my tongue and I said no. Don't you know about a week later, it all started. Now what is that about? Our minds are powerful tools!!!!
Amy
 
Hey Thaner
Ive been where you are right now- it was november of 2002 to april of 2003- i find it heartwrenching to say the very least and i truly feel for you- its hell and its gonna get worse- hang in there -get alot of support from your family-I was in charge of giving my father his shower than it went to giving him a bath(as i was the one sibling that took over the business for dad)- i found twords the end i was almost avoiding going over as i thought I had the disease- as my arms were twitching and i wasnt sleeping- my stress and anxiety levels were very high- i can remember thinking my life was over and i was gonna go like my father- I read all i could find on familia type and so on -you know it was over 3 years ago- And i still think it may be *** I always think it when the stress levels get high and my anxiety gets even higher- Last night I dreamed i had *** any way what im trying to say in a very round about way is your mind can kill you and at the very least it can make you very sick. So you have got to find support for your self- try some of the websites that are for PALS you should be able to find something there/ My father was 75 when he passed away from*** do you mind sharing your age and your fathers age?
Hey if this is too close to home and i sure understand if you think so- Im sorry I dont know how far your father is into this but you need to get help and support for yourself as soon as possible- youve got to remember all you can do is make him comfortable and dont take things personally if he says things you find to be off the wall or he yells at you - you need to take it with a smile- take time away for yourself as well We found 2 people on at a time was the preffered way if yu have the people- share the shifts-and again make time for yourself away Anxiety and stress can cause twitching just keep that in mind when the stress levels get high
If you want to talk more PM me ill be happy to listen or talk
\David S
 
tyn2chill, i live 5 hours away and basically am not able to relocate to be there, his pallative care has been sorted out for when he needs it, he has in house support for when he needs it, so he's doing well.
 
Hi friends

Some very sad posts and very brave posts.
God bless those who have *** and those that help them.

We are the lucky ones!

Thank you
Chris
 
Bumping an old thread from 2006 where someone actually met an als patient, and realized pretty quickly that ALS is nothing like bfs. It's a good read, you guys will be reassured by it.
 
This was one of the most reassuring posts I've read. I think many of us experience so much anxiety over this because we don't have a clue what ALS is really like. I think its that fear of the unknown that causes us so much problem. I have been twitching for almost 18 months, but can still do everything I always did (yea, I hurt and ache more, but I'm 51 years old - at least my body is 51 - heck, I still believe I can be 30 :p ) I've been away for a while, but am glad I took the time to come back for a visit.Hope you are all doing well and this helped for you too.BlessingsCindy
 
I reckon we should all forget about ALS as we would have noticed something very wrong by now. Although, there are people out there that have ALS for years and years and can still function. The patientslikeme website shows someone with ALS for 22 years......so, quit worrying!!!
 

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