Just have questions concerning ALS - Amyotrophic Lateral Sclerosis (ALS) Message Board

CookieDD · 04-03-2005, 10:04 PM

Since I found out I have ALS, I have been reading many things relating to this disease. Will I have all these things occur to me? Wheelchair, breathing difficulties, and ventilator? I know this

sounds like stupid questions it's just that I wonder what will happen to me. I know I shouldn't be doing this but sometimes I just do. I want to thank everyone because from reading all the threads I found out how wonderful everyone is here on the boards. It has helped me. To see the determination, and the wonderful spirits. Everyone is so caring. I thank everyone here because without the help of others where would we be.

tip2mol · 04-04-2005, 01:43 PM

Hi,

As you probably know- ALS is progressive. It occurs at different rates in different people. Will you face all that you are asking about- the probability is yes. The best thing to do is to be proactive. Get the wheelchair before you need it, because when you need it- you don't want to have to wait. Educate yourself, so if at the time your respiratory status declines- you already have made the decision whether you want to go on a ventilator or not. The doctors are the not the best at educating their patients and don't always tell them of options that are available. That is why I recommend getting involved in a support group. People there have dealt with or are dealing with these issues and know what it is like on a first hand basis.

My prayers and hopes are with you.

CookieDD · 04-04-2005, 09:26 PM

Thank you for taking the time to answer some of my questions. I guess I still want to stay in denial and I know I shouldn't. Everyone on here seems so positive and it seems like I am saying to myself no this isn't going to happen to me. I know this isn't good but sometimes it's the only way I can cope with having ALS. Right now it's in my right leg and I am sure in time it will start moving in other areas. I guess what frightens me the most is the idea of not being able to talk or swallow. I just need to do the best I can. For it's sure that everyone here has and I need to be more like the rest of you.

tip2mol · 04-04-2005, 11:26 PM

Cookie,

Please don't think that everyone is positive all of the time. What you are feeling is normal. There will be up days and down days. By being pro-active-doesn't mean to focus on this illness all of the time. It just means to plan ahead but at the same time- LIVE. If you are feeling good during the day- live it to the fullest. Don't let this disease control aspects of life that you have control over. I lost my Mom to ALS 5 years ago and have stayed with the support group and helped out over the remainder of the past 5 years. We have several people who are unable to talk- but that certainly doesn't mean that they can't communicate. Those that still have control over their fingers and hands will write down what they want to say. There are all kinds of assistive speech devices that will speak out what you type into them. There is an eye gaze system that works by staring at what you want to say or spell.

Hang in there!

CookieDD · 04-05-2005, 10:05 PM

I guess that's what I am trying to find out. What type of equipment that I will need as ALS starts affecting all parts of my body. I guess what frightens me is just knowing that I will be in a wheelchair, and just everything this disease has. I am 55, will be 56 in July. I never thought I would get something like this. The fact is I did and so have many other wonderful people. I just pray that I can face everything as well as the folks in the group have. Thank you for helping me.