Newbie - question

[DanielleP]

Hi all. I'm new to this whole thing, and I'm looking to see if anyone can give me some insight as far as what I can expect in the days/weeks/months to come.

My dad was diagnosed the end of May of this year, and since his diagnosis, this terrible disease has progressed quite rapidly with him. By July, he lost all use of his right hand and lower part of his arm. August, it was on to his left. September, his began losing use of his legs and started using a wheelchair. It all has been hard, but this month has been particularly hard to watch. He can barely shuffle to get to the bathroom anymore. He spends most of his day laying in bed. He is no longer able to get out of bed on his own or get out of his chair or off the toilet. He is down to about 110lbs from around 150 in July. The past couple weeks I noticed his breathing was a little different (more labored) and he finally admitted that he is having a hard time getting a good breath of air. He is living in an assisted living facility receiving wonderful care and has hospice aids there 7 days a week and nurse that comes once or twice a week, and although they seem to be making sure he is comfortable and has everything he needs, no one can give me any answers about this disease. He started using a bipap machine last night and his nurses are giving him morphine to help him sleep at night.

He just isn't himself anymore. He seems so tired all the time, his speech is increasingly slurred, and it scares the crap out of me that he has such a hard time breathing.

If any of you have had a relative progress at the rate at which my dad has, please give me some insight on what to expect. I'm supposed to be going out of the country for two weeks on Saturday and I'm so scared that I'm going to come back and he won't be here anymore.

Thanks, Danielle

 

[pearshoot]

you need to start blending some high calorie health drinks for him. get a heavy duty blender. consider milk. berries, other fruit variety, whey protein, creatine, ice cream. 2-3 times a day plus meals. start counting calories, he needs to get over 2000 a day to gain weight. I think that kind of weight loss will increase progression. I operate outside the box but that's a different story. right now diet and plenty of calories is the most important.

 

[vorton]

Hi Newbie,

I too, am new to the ALS world. My brother was diagnosed in July, 2013, however they believe that he was experiencing symptoms as early as last December. Even at that, we're only 10 months into the diagnosis and he has been experiencing physical changes just as rapidly. From a professional perspective, I would question the use of Morphine at bedtime - it causes respiratory depression and with the increasing loss of the muscles (and eventually the diaphragm - the muscles of respiration) I would question if this is the drug of choice for your father. Secondly, I would recommend you find and join a support group. They are all over the country.

My brother lost 40# before he decided to have a G-tube placed - it helps with keeping the calories up. If he keeps loosing weight, he will burn up his muscle mass faster. Go to the internet and do a search. ALS has a fabulous site as does the Mayo clinic. The information on the Mayo site is technical but very fruitful. I wish you well on this journey. Pax