Not sure what I am doing

[Karen12]

As my title suggests,I am not sure what I am doing here. I am not the one that has ALS my dad was diagnosed back in July and since that time my emotions have been a rollercoaster. At first I did not feel that I did not need to talk to others about what is going on with my dad, but after talking to my phyiscal therapist ( who knew how in sightful those people were!) he suggested that I find a support group in order to help myself and just feeling that I needed to find people that have either gone through this or are going through it now. As I write this post I am trying to figure out what I am hoping to gain by joining this forum and I guess I am hoping to find a way to express my feelings to people that understand. I have a great support system around me between my husband, friends and the rest of my families it's just hard to talk to them sometimes, I feel like I am constantly walking a fine line between holding my self together and breaking down sobbing on any given day. I am hoping that those of you that read this post will understand what I am trying to say even though I am not doing a great job expressing it right now.

 

[vickim]

So sorry you have had to find yourself here. There are a lot of people here with lots of knowledge. We are very understanding, compassionate and will do our best to make you welcome. So whenever you are ready to ask questions or vent we are here.

 

[ottawa girl]

Karen,

You've come to the right place. You're amongst friends. We share and we laugh.

You will get through this ALS thing. Even if you sometimes think you can't.

 

[Karen12]

Thank you for the supportive posts. The only thing that I am wondering about is my dad is scheduled to have a feeding tube placed the beginning of October and the procedure itself is not what is worrying me it is the fact that in seven weeks or so his respiratory status has dropped. He has been placed on a bi-pap at bed time and I am just looking for some thoughts/encouragement about what to expect during this.

 

[ottawa girl]

Karen

Every PALS is different. I'm happy your dad has made the decision to get the tube. Most people I know, with a PEG, thrive and gain a bit of weight. You may want to check threads and posts by "rose" . She has posted many tips relative to the feeding tube. The bipap also helps with increasing energy for many because of better sleep.

Please keep in mind there's an adaptation period for both of these. Patience is required.

I know seven weeks is fast, but let's hope your dad will maintain for months to come.

 

[Barbie]

everyone here understands what u are going thru. This forum is great to talk with people who understand exactly what you are going thru and can give you helpful hints for yourself and for your dad.

hang in there!

 

[designdiva]

Hi Karen,

You have chosen a great place to come, all of the caregiving and constant emotional roller coastering can be overwhelming to deal with alone and friends are great but many just can't understand what we go through. I think we all thought we could handle it on our own at one point but eventually found ourselves here It is nice to have a place to turn to for advice or even just to blow off steam on the bad days and know someone else really understands what you're saying. I can't tell you what to expect exactly in the days to come, all progress differently and at different paces, but it is an ugly disease that is so hard for not only the person with ALS but also everyone close to them. The feeding tube will make things easier where nutrition and medication taking are concerned, I don't know about the bi-pap, my pals refused to use one but I am sure it would making sleeping more comfortable for one to actually be able to breathe as good as possible, there is no stopping the fact that the lungs suffer with ALS but as we all eventually find out keeping our loved ones comfortable is the best we can do. I think in the beginning I thought there was some 'right way' to deal with ALS but in truth I think we all struggle and have to evolve as our pals needs change and worsen as well as learning to accept the anger, desperation, sadness, frustration, etc. that we face on a continual loop. I hope you will find some help here working through things

 

[here4her]

Hi Karen,

Everything everybody else said, plus this. Anti-depressants. I had exactly those same feelings, and realized that I couldn't function like that any longer. My Dr. prescribed me some anti depressants that have saved my life, believe me! My wife just passed away just over three weeks ago on Sept. 1st. Had it not been for the meds, I don't think I could have handled it, and I am still on them. Dr. says it is okay to be on them for a year if need be, without being too hard to get off of.

Please consider this option, it worked great for me. Good luck,

Steve

 

[zoohouse]

Hi Karen,
Welcome. I am fairly new here as well, but it is nice to be able to chat to people who can identify with you. This disease has such a steep learning curve, that you tend to be playing catch up most of the time. It is that fine balance, of trying to be prepared for that person's needs, and not looking so far into the future that you forget to live today with them.
Paulette

 

[affected]

welcome Karen, none of us what to be here and yet it is a true support to all of us.

You can talk about how you feel here, and we all understand as we all feel it ourselves.

Here4Her makes a good point about anti depressants helping, they do, and many carers have found this. They don't change the situation, but they help us cope with it.

 

[Karen12]

Thank you all for you wonderful posts. Rereading them have helped me through and given me encouragement. Yesterday was another day of appointments for my dad and while I was not there I got the run down from my sister that did take my dad and while this group of people did not have anything different to say they did put him on Riluzole and I am just wondering what your thoughts were about this medication?
Thank you again for all of the posts back,
Karen

 

[skipper66]

Hi Karen,
My dad also has ALS. He just turned 79. He has been diagnosed for about a 1/2 now. He has limb onset. So, his breathing hasn't been too bad at present. What is weird with him was that it was worse last November and used it to sleep at night. He tolerated extremely well and he had more energy with it. He know longer has to use it though.
The peg I personally know nothing about to give any good advice. My dad refuses to ever use on. But, from what I read on here it has really helped alot of the PALS. It seems like the one's with the bulbar onset almost definitely need to get one.
Feel free to express any emotions you have on here. We will do our best to offer support. Take it one day and pray. God will help you cope. Also, feel free to drop into our Come For Tea thread. We just talk about everyday life. Share jokes and everyday stresses and get to know one another. Hope to see you on it. Kim

 

[affected]

Hi Karen,
my PALS is getting the PEG feeding tube next week. His respiratory status has dropped a bit more than 20% in the past 2 months, and his swallowing getting worse, and he was diagnosed officially in May.

He did try Riluzole but had some side effects he didn't like and went off it.
They say that if it works it can slow progression a little, and average giving you an extra 3 - 6 months, but for some it slows the progression for a year or 2, so I think it is well worth a try. Other here that are on it can tell you more I'm sure.

I hope you settle in with us here and find it is helpful to talk to others, I find it incredibly helpful.

 

[veggiepete]

Hi Karen...Many of the folks here are going through exactly the same as you, and welcome you to discuss, vent or whatever you need..both my wife and i are seeking counselling elsewhere, but i hope to get my wife to join when we needs more 'relevant support'
No shame in taking pills..I'm taking anti depressants..trying to keep strong for my wife, to stay strong for me..