I need advice

[Jacketfan89]

Hey everyone,

I'm not sure if I have ever even posted on here before. With that being said, I'll just give a brief history of how ALS has made its way into my life. My mom met Randy, her Fiancee about 8 years ago after he moved from California to Georgia. He was extremely healthy, semi-pro at tennis, and running 4-5 miles a day easily.

Last year we noticed that he started tripping a lot and talking slowly, and then in January after a visit to the neurologist we learned that he had ALS.

We have managed very well so far. He was very independent for a long time and it took a lot of falls and agony just to get him to use a wheel chair. We finally convinced him to go to the ALS symposium at Emory this weekend and he is really excited.

Now the scary part. As I mentioned, we have managed very well SO FAR. My brother and I help during the day and at night, and my mom does as much as she can when shes not working. The problems started last week with swollen ankles and difficulty breathing. It seems that his breathing has deteriorated extremely quickly.

We went to the emergency room on Friday and we were there for 8 hours and they did absolutely nothing for him besides prescribe some azrithmyacin and send him home.

No suction machine, assisted cough, or cpap prescription...nothing. He has no insurance and after they ran ct scans, xrays, and all kinds of other tests, who knows how much wasted money that would be.

I am extremely worried that we can't wait any longer to get him some kind of help for his breathing. He doesn't have insurance, and we can't get him an appt at the clinic for at least a week.

What is the best way to go about getting a bipap, assisted cough, and or suction device with no insurance and relatively quickly? He hasn't even visited a primary care physician because he is so worried about what they might say...and so far no doctor he's been to since he's been in GA has done anything for him. We have an M series cpap heated humidifier I wanted him to use for at least a couple days until we can get him a bipap...and we have GOT to find a way to get the mucus out of chest. His cough is took weak and constantly feels "junked up" to the point where he doesn't want to sleep lying down in the bed.

Also any advice on easy to swallow food? He can no longer eat meat loaf and I know he gets tired of macaroni and mashed potatoes..

Ive done hours upon hours of research and it's so overwhelming. My mom cries every day and it's like we're all falling apart just as the "hard part" is kicking in. We really need to be sticking together at this point because it's only going to get harder.

Sorry for the long winded post, but any help is greatly appreciated. I really don't want him to lose him to something that can actually be helped.

Thanks again,

Matt

 

[Barbie]

Matt, I am confused--he was diagnosed a year a go and he doesnt have insurance-- did he apply for disability or medicare or medicaid? has he been to an ALS clinic? If he has has a true diagnosis then he needs to apply ASAP. with medicare or medicaid he can get the assistive equipment and help he will need. His Neuro can refer him to a clinic or you can contact your closest ALS association for assistance.

Dont have any idea where you are in GA, but I know that Emory is a premier ALS facility.

 

[Jacketfan89]

Unfortunately the neurologists that he went to didn't help him at ALL with applying for any type of medicare, and he was told by many that he "made to much money" to be eligible for anything like that. I am only 23, and my brother is 19. My mom has never had to deal with anything like this, and for a long time Randy refused to go get seen about because he thought he could "reverse it."

He did have insurance that he was paying $200 a month for and they rejected paying ALL of his neurology bills because they said it was a preexisting condition even before he was diagnosed! Is this legal? After they were denied he has already paid out of pocket those crazy expenses.

Thank you guys so much for the help. Its a blessing to be able to connect with other people who are going through and have been through the same difficulties. They say things happen for a reason. I don't know why such great people get such terrible things, but this disease has brought our family back together, and given all of us the opportunity to bend over backwards for someone who has broken his back for us the last 8 years.

I don't want to see him staying up all night and struggling because he feels "junked up" when he lies down.

We are taking this disease a day at a time, and the ALSA website, this forum, and google have been a tremendous help up to this point. It's getting serious now, and we are going to get him to Emory.

In hindsight, I wish I would have been doing all of this research 6 months ago. The thing is me and my brother both just recently moved back home because he was to the point where he doesn't feel comfortable being at home by himself. Neither neurologists told him anything to expect from the disease and none have even been in contact with him. They did give him a number to the ALS clinic at Emory, but when he called he was told the Doctor was only available on Tuesdays from 7-9.

At that point, I don't think he realized how much of a beast this disease really is, and after the last week or so with breathing problems, I think it has really hit home with him. His attitude has changed completely.

When Randy was first diagnosed in February, he didn't want to admit that he even had the disease. I think the neurologists did a terrible job in telling Randy what to expect and what steps he was going to have to take. I feel terrible that I didn't know about all of the help that is out their sooner. Even at the emergency room the social worker had no interest in helping Randy get SSDI.

I have no idea how disability works if hes already receiving SS from early retirement. I just really want him to feel better. The breathing problems and mucus are one of the few things that can be helped. I have already submitted his disability report and I am going to call the SS office on Monday morning and do his application and interview on his behalf. Apparently with ALS, the process is fast tracked and he will be eligible for plan A medicare immediately after his SSDI is approved which is almost guaranteed with his diagnosis.

We are going to get him to Emory ASAP, and we are all 4 going to the ALSA Symposium next weekend. Hopefully I can get him on Medicare and get him a Bipap soon.

I am really worried he is not getting enough oxygen. He is having the excessive fatigue and a weak cough. Like I said earlier, my grandma had a Phillips Respronics M series CPAP...I know these aren't typically as good because they only push air in, but would it be o.k to use for a little while when resting in the recliner to try and keep his lungs expanded and his oxygen up?

I'm hoping to get the SSDI rolling Monday. I am also going to call the GA chapter ALSA and get Randy an appointment at the clinic. I told him about their facility and their expertise and he is skeptical because of his past experiences with all of his doctors in GA. He seems excited to go now, so its all about making him an appointment and getting him down there. I hope he can be helped while in the process of getting medicare because he needs something ASAP.

Any advice or tips are greatly appreciated.....and prayers for my mom. She is having such a hard time trying to work to support the house and take care of Randy when she can. She cries many times a day and doesn't know what to do either. Advice for her is greatly appreciated as well.

Thanks PALS and Friends!

 

[momap53]

Matt, so sorry you and your family find yourselves in this very difficult siTuation.

You might ask if the ALSA lending closet has any equipment available to loan. Please check with the MDA ALS division as well. They have excellent caregiver guides and may have a lending clOset as well.

Another resource would be the ALS guardian Angels run by Stu Milheiser. You can check out their face book page. They have been of great assistance to several of our members.

Sounds like the cough assist would be very beneficial to him.

Check out a site by a Neuro Nurse who has had ALS for over 20 years. There are some handy tips there and a primer on Bipap. It's ALS from both sides dot org.

I hope the symposium will be very helpful for your family. My doc is going to be there as well.

 

[Tokahfang]

I'm not in any way well educated about this, but until someone who is comes along:

I think I heard cpaps were bad for PALS with breathing difficulties. Breathing the CO2 out is just as important as getting the oxygen in, and their diaphagms can't fight the cpap. I would not do such a thing without at least verbal guidance from a medical professional.

I am so sorry about the whole situation. Does your local hospital system have health care advocates? It really sounds like you guys could use one.

 

[Tofinodays]

I'm so sorry that you are going through this; it is such a cruel and overwhelming disease. I would recommend that you contact your local ALS Society to find out what support is available. It took us almost two years to connect with ours because my husband refused to go back to the ALS Clinic for a year after diagnosis and I really didn't know what was available. I became so overwhelmed trying to guess at how to best meet my husband's needs that I became unable to work. The two most valuable resources I have found are the ALS Clinic where there is a fantastic team including a physician/researcher who specializes in ALS, Occupational Therapist who has helped us with all kinds of equipment (power wheelchair, ceiling lift, Carroll hospital bed, etc), speech-language pathologist who assesses swallowing and connected us with a specialized text-to-speech progam for my husband's I-pad and will be setting him up for eye-gaze technology in two weeks, a dietician, respiratory techician (bi-pap, cough assist - neither of which he will use) and the ALS Society who sent someone to our house to help me navigate the supports available in the community, how to access them and what to expect.

Until your mom's fiancee gets into the ALS clinic, keeping his head elevated even when sleeping is better than laying flat and if he develops signs of pneumonia, he will need to go to the ER, of course. You really need expert advice regarding respiratory issues and equipment. It sounds like you have done the very best that you can and are continuing to do so. Your mom is really lucky to have you. I don't think I would have survived this far without my daughters' support.

 

[Jacketfan89]

This weekend has felt sooooo long. I can't wait until I talk to someone that actually has some sort of experience with this disease when I call tomorrow morning.

I am bound to find him a bipap machine though. I think that if we can get his breathing back to normal, it will make a huuuuge difference in the way he is feeling at the moment.

I tried to get him to watch the video on youtube about adjusting to breathing changes, but after 3 minutes he asked me to turn it off...lol. I don't blame him. I just hope I can convince him to wear the mask and get used to it.

We are going to get some thick it today to see if it helps with him choking on water, tea, and juice. I think my mom is going to get him a vanilla milkshake to try too, but hes not really a fan of cold stuff.

 

[momap53]

Matt, try some soups processed in the blender.
Puddings and yogurt consistency may work well for awhile.
Have him try tucking his chin to his chest as he swallows.
Early on, lemon flavored or carbonated beverages may be easier.

 

[momap53]

Also, check out a u tube video called the ABC's of als. Great info for anyone dealing with this.
Longer post went to moderation, look for it later.
I believe I would challenge the insurance decision.

 

[mich5]

Matt, drinking from a straw helps me keep my chin tucked so I choke less.

 

[Daughter3]

Hi Matt

I'm writing this from my fathers hospital room. He spent the summer getting worse, swallowing difficulty and extreme fatigue. I wish I knew this then, but 5 weeks ago we couldn't wake him up one day and he was blue. He was taken to emergency and intubated. Fast forward to now, he is finally coming home tomorrow, but on a ventilator with 24hr respiratory care. My point is, the fatigue is a warning that he is not only not getting enough oxygen, but more importantly, he can't get the carbon dioxide out. A Cpap won't help that (my father slept with a Cpap machine for the past year). An emergency department would have to help your stepfather. I don't know what would happen after that without insurance but if he qualifies for Medicare they pay for everything (not having in home care, but the long term hospital care). Good luck to your family. I hope you can help them to mentally prepare. This next step is rather shocking at first.

 

[Barbie]

Matt you are awesome and I am so impressed with your concern for Randy. You will probably need to have him with you at the SS office--they are funny about having others speak for clients. Medicare is not based on income-- that is medicaid. I am sorry your neuro wrote him off. Our first neuro gve my husband his diangosis and said good luck--that was it. The ALS specialists at a clinic like Emory are so helpful caring and knowledgeable. they will get the ball rolling for all his needs. in the mean time the als assoc may have things they can lend you. Get the medicare right away!

suggest that he get on this forum too, bucause the pals here are great and so helplful and will lift him up.

 

[Ms. Pie]

Get hold of your local chapter of ALS Association. The can be a tremendous help with everything ALS.

http://webga.alsa.org/site/PageServer?pagename=GA_homepage

 

[Katie C]

OK. Here's my opinion: First you need to find and contact your closest ALSA chapter and ask to speak with their social worker, who will help walk you through what you need to do. You can start filling out the SSDI/Medicare forms online but it really sounds like you guys need someone who's been there to help walk you through it. Between ALSA and my husband's HR department I had a lot of help with what was available that I'd never heard of.

Regarding the food: Get yourselves a good heavy-duty blender. You'll be amazed what you can puree and it tastes pretty darn good! I was known to puree pizza, lasagne, and Glen's favorite: pot pie. Cook as you usually would, cut up the hot food and put it into the blender with as much cream, sauce or gravy as needed to get it to the consistancy he can handle. Also, remember puddings, applesauce.. might just want to walk the grocery store and see what catches your eye! Soups are good but may need to be thickened.

You're just a little younger than my son was when Glen was diagnosed, and like him you are proving yourself to be a very mature, special person!

 

[rosec]

Matt,
You are doing a great job.
When you blend soups that ma y be too watery, just tear up a slice or two of bread and add it to the blender to make it thicker.
Sippy cups work well for drinks.