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pat-in-fl

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New to the forum. Wanted to say hi to all. My mom was diagnosed with bulbar ALS about 1 yr ago. Had symptoms of same for another 1 yr prior but we all thought she had suffered a limited stroke affecting speech/swallowing. Silly us! My husband and I are nurses and it fooled us! Never in a million years had I associated ALS with an 84 yr old....course it also fooled our speech therapists for a while too. Mom has a G/J tube now for about 5 weeks. She has lost about 40 lb. since the dyphagia started. Unfortunately she thinks her new weight is just wonderful (118 lb). Kept putting us off getting the tube put in. She will not agree to having continuous feeds w/J tube overnight, so we have to bolus the feeds through the G tube during the daytime. So of course she has no appetite which is probably a blessing as she has MAJOR problem swallowing. Doing all her meds through the G tube also now.

Got a Dynavox lightwriter about 6 months ago and is able to use it pretty well as she still has good strength in arms/hands. Has some lower extremity weakness but still getting around without walker. Biggest problem is her endurance and getting short of breath. I am certain she has diaphragmatic involvement too. She can't sleep well at night; sleeping during the daytime (unusual for her), increased memory problems. We are awaiting pulmonary consultation. Just taking a shower totally wipes her out and I need to assist her.

I would love some input on the use of bipap. Do you need to have a sleep study?
My husband has a c-pap maching for sleep apnea but I have not seen a bipap machine in use before.

Been reading the forums for the last couple of days and love the supportiveness of the group. I think you are doing wonderful things for each other! If you have any nursing questions for me, I would love to help in any way.
 

hboyajian

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My dad was also 84 when diagnosed, although he had symptoms for 2 to 4 years prior which were attributed to other things. I think it is harder to catch in the early stages with older people because weakness, instability, and spinal problems are erroneously chalked up to other problems that can occur in the upper years.
You don't necessarily have to go through an entire sleep study to qualify for a bi-pap. A pulmonary function test and possibly also an evaluation of arterial blood gases can indicate a need for bi-pap support of her breathing. The pulmonary function test is routine with ALS patients, and my dad had one every time he went in starting with his first visit to the ALS specialist. My dad didn't need to wait for a separate pulmonary consultation, and he was prescribed a bi-pap based on the ABG test, as his carbon dioxide levels were too high even though his FVC was just above 50%.
How far off is your mom's pulmonary consultation?
 

Icanmanz

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Pat, welcome to the forum! I am so sorry to hear about your mom. I lost my 38 yr old son to Bulbar Als, too. We, too, thought that he was walking around with a light stroke or something. It is a long, sad story, but it all ended when he couldn't swallow, talk, walk, get around, and God knows what else. He passed at home with us. It was a sad, but very memorable, and blessed event. I cherish every moment of my son's memory, and he, forever is in my heart. Where I go, he goes!
You sound like such a wonderful person for offering your help to others with questions and answers. God will reward you greatly for that. Take care of mom, and God bless you all.

Irma
 

pat-in-fl

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Bipap

Thanks hboyajian for your info. We don't have the appt for pulmonary yet--have to wait for them to call us with the date/time unfortunately. That's the way it works down here--again unfortunately. Alot of wasted time :( Thanks for the bipap info. I am hoping that once they take a look at her (you can see her using secondary muscles to breath) that they will just do ABGs/PFTs and order it. When I ask my mom, she says she is not short of breath interesting enough.

Icanmanz - Sorry to hear of your loss. It saddens me to hear how fast this disease can take someone. I appreciate your words of encouragement and want to help where I can. Pat
 

brooksea

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Hi Pat!

Welcome and sorry to hear about your Mom. Is she being seen at an ALS Clinic? My husband is on a BiPap at night and is using one on loan from the ALSA. His FVC came back too high for the insurance to cover a BiPap, so the clinic got a machine from the ALSA for him. He was reluctant at first to use it, but now says it is helping him. He seems to have a lot more energy during the daytime now.
 

pat-in-fl

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Thanks jimercat

Thanks for your input, jimercat. Yes, we have been to the ALS clinic neurologist here. He was the one that mentioned to us about using bipap. That was just about 4 weeks ago. At that point we hadn't really talked about it. I get the impression that our ALS clinic is not as well organized as others seem to be :( It seems like I have had to fight and scratch to get my mom seen by and get the appropriate (i feel) treatment for her disease. I am firmly convinced that the bipap would help her. Now, whether or not she will agree to use it? Another story. It took me foreever to convince her to receive her tube feedings at night through her J tube. We did it for 2 weeks and then she wasn't sleeping so I gave up. We now do her tube feedings 4 times a day through the G tube. I am sure there was an element of anxiety about the tube feedings running while she was trying to sleep. thanks again! Pat
 

hboyajian

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Hi Pat, I'm sorry I sounded abrupt in my first post. I accidentally hit the send button without typing an introduction, then somehow couldn't go back to edit to say hello and welcome. I agree with you that the bi-pap could help, and I find it troubling that they are making you wait so long before even evaluating her pulmonary function. If there is any way to get in sooner, if you feel it is necessary, pester them for it.
Sincerely, Holly
 

brooksea

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pat,

Why would you want to do feedings at night while she is sleeping? How do you do that?

4 weeks ago a suggestion for BiPap?...You need to get it NOW! You are healthcare pro. you are gonna have to be aggressive. Once you research ALS you will see that someone needs to tell these a-hole people to get a grip! You don't have time to wait around!
 

pat-in-fl

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Hboyajian - You didn't sound abrupt to me :) I also find it very troubling that they are dragging their feet. Apparently there was a rep from MDA/ALS that attended this clinic regularly from Jacksonville but she left for another job unfortunately. I just don't get a really good feeling (like progressive/aggressive management) from these guys so far.

Yes I am being a PEST already. I have another appt for my mom with another Neuro. We hit a wall trying to see a pulmonologist without a "referral". We have an appt with her primary MD next Weds who I will request get her in to see Pulmonary ASAP.

Gotta run, Mom's calling. Pat
 

brooksea

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pat,

I wanted to add that the respiratory people at Emory Clinic said they recommended a BiPap to all ALS patients ASAP. It is their belief that the BiPap will help the patient breathe "independently" (without invasive measures) for a longer period of time.
 

pat-in-fl

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Jimercat - Yes, I have read that about ALS patients (having bipap ASAP). I just got in the mail today the appointment date for pulmonary consultation. GUESS WHEN? 8/12/08. Can you just believe that? Now this is the appointment for her being made through the neurologist's office. This has me just about in tears. This just typifies what I have been dealing with! I just cannot believe they are that stupid that they think my 85 yr old mother can wait that long.

We have appt with her gerontologist this wednesday. Hopefully he can do something about this. Maybe get a different appointment with a different pulmonary guy. At this MDA neuro clinic apparently the neurologists cannot handle dealing with the effects of the disease :oops:

Sorry, I am p.o.'d

Pat
 

brooksea

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Pat,

Does the center (I'm assuming MDA Clinic in Gainesville) not provide multi-disciplined approach when meeting with patients? Why do you have to go outside the clinic to get her evaluated?

The ALS Clinic my husband goes to has all professionals needed at the same locale. No need for further appointments or money for copays!

[email protected]#$! Your Mom is 85? With her weight loss, she sounds like she may be frail. Anyone/ Neuro dealing with a person of that age and weight with a diagnosed of ALS should know that time is of the essence for survival.

Please let us know how you fair with the Gero. Hopefully he can get something done right away. Just an rx for the BiPap and you could get the machine and the ALSA may have one in their loan closet.

Good Luck!
 

hboyajian

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I also think that use of a bi-pap should be made available to every ALS patient upon diagnosis. It is unconscionable that insurance companies dictate what a person is eligible for rather than policies that make medical sense to provide people with the best possible health condition and quality of life under the circumstances.

If I had known what I know now when my dad was suffering through his last months of life, I would have demanded it for him, and cited any research or doctors opinions I could lay my hands on. At the very least, he would have been able to breathe more comfortably in the weeks before he went into respiratory arrest, and perhaps his life would have been extended for a time longer.

Pat, it is absurd that they should make her wait 3 months for an appointment. She has a terminal illness that can take a person down in a matter of months to a few years, depending on the progression. I know you know this, just want to offer you my support when you go in to fight for what your mom needs. Sincerely, Holly
 

ptich

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hboyajian, I do not undrstand how insurance companies could have anything to do with BiPAP decisions: once ALS is diagnoseded, the patient should get Medicare because of the disability (which is automatically associated with ALS diagnosed).
 

hboyajian

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We were told the insurance covered the bi-pap only when the FVC was down to 50%. My dad had it prescribed before he reached that point because he had an ABG (arterial blood gases test) that indicated his carbon dioxide level was too high. Perhaps I am mistaken that it was his insurance company, but rather medicare? I do not know. Either way, I consider the current policy inhumane.
 
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