Father newly diagnosed

sohail009

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Jul 19, 2019
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7/2019
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Hello,

My father, 63, recently diagnosed with ALS, currently reside in Singapore. I have an appointment to see 2nd opinion on current diagnosis. But it seems the doctors diagnosis is correct based on symptoms that one of his hand is almost paralyzed, slurred speech, decline muscle, breathing problem etc. His body appearance looks like 90 years old person.

When I read the types of Motor Neuron diseases it seems he could have PLS.

I would like to know from fellow forum members, what type of BiPAP machine I should get for him? Any experience/suggestion on best manufacturer and model? Also what type of nutrition he should get, any suggestion?
 

patrick123

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Glad you found us, it's a great place to ask questions. As for a Bipap, most of use a trilogy. It can be used as a non-invasive Bipap, and is easy to switch to invasive ventilation (tracheostomy).

Patrick
 

KarenNWendyn

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Sorry to have to welcome you here. Re: nutrition— the main thing is to not lose weight. If he has slurred speech, he may soon have difficulty with swallowing and chewing. It will be important to find foods he can eat. Blended food such as smoothies are easiest. A dietitian can help.

At some point, he will face a decision whether or not to get a feeding tube. If he is plugged into an ALS Clinic, this topic will undoubtedly come up.
 

lgelb

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I am very sorry. Is he being seen at the National Neuroscience Institute?

From what you say, I believe ALS is a more likely diagnosis than PLS. But the point is to support him how he needs.

If you are going to be sourcing a new or refurbished or gently used BiPAP yourself, a Trilogy (or Astral, a similar machine made by ResMed) can be difficult to find affordably. Until your dad needs a unit to go outside with, if sourcing a Trilogy or Astral affordably is difficult, you can use a "regular" BiPAP with a backup rate (not as portable because it relies on mains power, but otherwise does what he needs for now)

Some sites to look at are dotmed and secondwindcpap, which ship internationally. You can compare these prices against local distributors' prices. You may also be able to get a better deal if you find an export firm that an online source can ship to, instead of you directly. If you find a machine model, you can check with us as to whether it would suit.

Essentially, the features he needs, which are available in older and newer machines, just not all of them, are:
BiPAP (not CPAP)
Volume control, can be called AVAPS or iVAPS or just volume control -- this is not the same as "auto" BiPAPs that vary the pressure when apneas occur. Volume control varies the pressure delivered, within set parameters, to deliver enough air to meet his needs
Backup rate [initiates a breath on time if he doesn't -- not the same as supporting the whole breath as would occur with a tracheostomy + BiPAP]

The manufacturer of the Trilogy, Philips, has a Philips APAC Center in Singapore. People there should perhaps be able to help you with sourcing.

Best,
Laurie
 

sohail009

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Loved one DX
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7/2019
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Thanks to everyone for kind response and suggestions. Any one here experienced with Philips DreamStation CPAP & BiPAP

(commercial link removed)

For Nutrition, he already have started slurred speech from past couple of month but he is eating food by himself, I know eventually he probably have to switch on liquids type of foods like soups etc. As he is complaining about loosing power in his body so I am looking for suggestion on any type of soup / drink or vitamins which can give him some instant strength.

He still unaware of his condition, and we are not in position to tell him as he will loose the hope. So we have to lie everyday and give him some hope but at same time I am looking for anything which gives him some strength so he feels that the medicine is actually working.
 

lgelb

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The DreamStation AVAPS BiPAP would work, not the other models.

If you use the search function on the top right, you can find many suggestions for liquid nutrition via high-power blending together things like milk, nut butters, eggs and even pureed meat depending on what your father tolerates at any given time without choking risk. But ultimately, to continue receiving nutrition, he will likely need a feeding tube as mentioned.

Most of us believe that it is kindest to tell someone the truth about a fatal illness, because even if you don't see it, people figure out that something serious is wrong. The uncertainty of not knowing what is happening makes the rest of their life harder and less happy than knowing the truth and being able to make plans and make the most of their life.

There is still much life possible for your dad. You will show him the most love and respect by coming to terms with this diagnosis for yourself. Then, with others in your family, you can show him how it is possible for him to do the same, by helping him fill his life with whatever he can still do and experience, that he enjoys. And you will all feel better when he is gone, for having done so.
 

sohail009

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Recently his short of breath issues has increased (but still in control) thus I think we need to buy non invasive ventilator. As he is currently in Singapore with no insurance to seeing specialist is bit expensive. I saw one specialist today but he suggested to get admitted in hospital for 3 days to run non invasive ventilator machine settings which costing us around 10K (excluding machine, this is only hospital charges for helping on getting optimal setting on machine).

As I have never used this machine nor ever seen it, wondering if anyone can suggest is it really necessary to stay in hospital to get settings or I should buy Philips BiPAP AVAPS or Philips BiPAP autoSC (as few fellow forums members suggested) and try and learn settings by itself?

Any advise or suggestion will be appreciated.
 

lgelb

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If you buy the AVAPS machine (Respironics), VPAP ST (ResMed), or ST machine with iVAPS (ResMed), I can help you optimize the settings, as I have for many here.

It should not require a hospital stay; obviously, that would not happen in the US or, I believe, most countries.
 

sohail009

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Here the EMG report of my father it was done by neurologist but i believe he was not neuromuscular. But he said its ALS. Is this findings are same for others ?
 

Nikki J

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I only see one page and in spite of the emg title is a report of a nerve conduction study. If he had an emg there should be abother page with that and also a summary/ conclusion. I deleted it because it had your dad’s name. If you can post the emg please remove his name and any other identifying data first
 

sohail009

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Thanks Nikki. This is all we were given. No other report.
 

Nikki J

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Did he have a test where they put needles under his skin? That is an emg and what would show ALS or not. The report you posted was an ncs and he would have had shocks but no needles. An ncs can not diagnose ALS. If he did have needles ask for that report. I had my ncs and emg separately and like the page you showed the ncs report also said emg. I had to be very clear to medical records about what I needed to get everything
 

KimT

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Regarding his diet, I would suggest buying a Vitamix or other high powered blender. You can put nutrient dense food such as nut butters, coconut oil, avocado, banana, Greek yogurt (excellent source of protein and good for gut). I throw in some spinach and kale with lots of raw cocoa and it tastes like a thick chocolate milkshake and has about 1,500 calories. That's my breakfast each morning.

Unless your father has cognition issues, you might want to consider withholding information from him. He's my age and I like making my own informed decisions. But you know him better than we do.

Laurie knows more about BiPaps than any respiratory therapist or doctor I've met so far, including those at ALS clinics. Her offer to help you with settings......take it.
 

sohail009

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Joined
Jul 19, 2019
Messages
18
Reason
Loved one DX
Diagnosis
7/2019
Country
SG
State
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Regarding his diet, I would suggest buying a Vitamix or other high powered blender. You can put nutrient dense food such as nut butters, coconut oil, avocado, banana, Greek yogurt (excellent source of protein and good for gut). I throw in some spinach and kale with lots of raw cocoa and it tastes like a thick chocolate milkshake and has about 1,500 calories. That's my breakfast each morning.

Unless your father has cognition issues, you might want to consider withholding information from him. He's my age and I like making my own informed decisions. But you know him better than we do.

Laurie knows more about BiPaps than any respiratory therapist or doctor I've met so far, including those at ALS clinics. Her offer to help you with settings......take it.
Thank you for your kind response Kim. Also very thankful for offer from Laurie. I actually can not buy device without doc prescription in Singapore, its a law. And as I mentioned doc is asking to get admit in hospital for 3 days which bill around 7k. So i am planning to see a doc in Malaysia, hopefully they will write a prescription.

About the nutrition, I will try something non fatty as he already have a serious heart problem where his two of arteries are blocked. So we have to be very careful in his diet as well.
 

sohail009

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Joined
Jul 19, 2019
Messages
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Reason
Loved one DX
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7/2019
Country
SG
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Did he have a test where they put needles under his skin? That is an emg and what would show ALS or not. The report you posted was an ncs and he would have had shocks but no needles. An ncs can not diagnose ALS. If he did have needles ask for that report. I had my ncs and emg separately and like the page you showed the ncs report also said emg. I had to be very clear to medical records about what I needed to get everything
Yes they put needles in his skin at various parts of body. And also they pass some electric current as well. But doctor has gave us that report and then another letter for doctor for Singapore in which he mentioned that he did EMG and found it could be ALS based on symptoms and EMG findings. Before EMG in malaysia doc in SG asked us todo EMG and also some report related to Spinal. But malay doc conduct EMG first and says its ALS and no need to do that other report which was related to spinal cord. I have now appointment with Neuromuscular in Singapore on 2nd August to have 2nd opinion, lets see what he says.
 
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