;Hubby's progress - Amyotrophic Lateral Sclerosis (ALS) Message Board

SteelMagnolia · 08-27-2003, 09:03 PM

Thank you for your responses. We, too went the round of doctors in 4 cities and 2 states, for about a year and a half before anyone would dignosis ALS in Oct, 2001. We were determined in the beginning to beat this but it is winning. Mike is on the bi-pap 24/7. He worked until early June, but has really deteriorated since then. He is on hospice and I have a slew of volunteers who are making it possible for him to stay at home. He does not walk, has no use of his hands, breahting, swallowing and chewing grow more difficult everyday. We started small doses of Ativan about two weeks ago, to calm him and assist in breathing. Ironically, we got a reminder card today for MDA clinic in three weeks. He hasn't left the house in three months!!Thanks, again for your prayers. That's all that keeps me going some days.

GI_WILD · 08-28-2003, 10:19 AM

Thanks for posting more information, I am praying for your husband,and you too, As difficult as it is for him, I know that you are going through a terrible time,
feeling helpless at times, wanting to do more, looking for anything that could reverse the situation.
I hope you dont forget about your own well being, and health during this time, care givers,have so much responsibility, not sure I could ever be that strong, God Bless all of these people who give so much to help others in need, the world is a much better place when people step up to help each other.
Its hard for me to ask my wife for help, sometimes, even though I know she would do anything for me. I guess its just that I keep on wanting to do the things I used to, but with weak arms its really hard on your other muscles, and back.
I will watch the MDA labor day telethon this year,the first time in many years. Its sad that we turn our heads when times are good, and then wakened back up by theses terrible tragedies, and diseases.
Anyway, im thankfull for your post, it gives others too! a chance to respond, And it really helps knowing what others are experiencing, The fear of the unknown, is overwhelming, and the more i learn about this disease and how it effects the patient and loved ones, the stronger my attitude to fight ALS, and help others
with their fears.
WHEW! Im out of breath LOL
Thanks for being here again
PRAYERS for ALL

slaughter17 · 08-28-2003, 10:39 AM

I am so sorry to hear that. My fahter was also diagnosed in 2001. In the month of August. He just recently passed away on June 25th 2003. Hospice is great isn't it! I worked for hospice for a while and loved it. We used hospice in his last few weeks. My dad used the BIPAP at night to help him sleep and breath. He started using it more during the day just before he passed. Does the Ativan help much for him? Hospice put my fahter on a combination of Morphine and Lorazapam. To calm his anxiety and help him sleep. They told us if we used them together it would stop the excess salavation, and reduce coughing. It really helped him breathe easier. It is so wierd how ALS works. It is so different for every person. You say your hsuband can't walk or use his hands. My father could use his arms and hands the entire coarse of the disease. His voice didn't go until 2 days before he died. Then he couldn't form any words at all, mostly just noises. Do you go an ALS clinic in your area? And how much did MDA help you out? MDA helped us so much. Sorry to talk so much about my fahter's death. It just facinates me to see how much it can affect people differently. I always wnder why it does. I am glad to know that your hsuband is on hospice. They will everything they can to ensure he is comfortable and cared for. I worked as a Hospice aide. I quit after my dad passed. It became to hard for me. My heart goes out to you and your family. I greived for my dad from the time he was diagnosed, and still I am grieving. I thought because I knew it was coming it would make it easier. I was wrong. If you ever need to talk or cry you can come here or contact me personally. Good luck and let us know how things go.

[This message has been edited by slaughter17 (edited 08-28-2003).]