I need help

[kripa]

Hello

My father was diagnosed with ALS in 2013. His symptoms were very subtle and started off with thumb numbness. When we tried everything from surgeries to physio-therapies we were still hoping that the numbness had something to do with stiffening of the nerves or muscles. I am from Nepal and Nepal being Nepal , we have very little access to the diagnosis of such diseases. In Nepal even though I am born here I am bereaved to inform that most of the people die due to poor diagnosis of diseases from the doctors. Little did we knew that , later his health started deteriorating and it was only after we flew to Bangkok that that he was rightly diagnosed.

The doctors here are very un supportive and it was because of this we specially my father avoided doctor's visit . All the doctors had to say was that it is a progressive disease and there is no cure for it whatsoever. But last year in July 2015 , his respiratory system collapsed and was in the ventilator for 15 days . He had to undergo tracheotomy and is on a Bi-pap machine . He also had a feeding tube adjusted as well to help him get a proper diet.

Recently, what we ( me and my mom) have been facing is that he's been having sleep problems. By God's grace, he does not suffer from pains but he rarely sleeps.
I wanted to ask you, anyone who is reading this to help me and my mom go through this.

I am writing to this to you because me and my mom are mentally devastated to see him in this condition. We come from a middle class family and belong to society where such a disease is never heard of. We have very few support from our relatives and family members and like I told this tragedy that has occurred in my family is only been a mere form of self pithy from the outside spectators,

I wanted to ask what can we do? My father has serious sleep issues . He is taking medication prescribed by the doctors and is still getting hardly sleep. He is constantly coughing and has to do suctioning every 15 minutes or so. Is the disease getting progressive.
Please provide me suggestion and your support any form of it could be very helpful.

I am looking forward to hearing from you.
Kripa.

 

[JimInVA]

Kripa,

I am sorry that you find yourself, here. Like your father, my wife also has ALS. Until she began to have problems that were diagnosed to be ALS, we knew very little about the disease. You will find a wealth of information within this forum. Look to the "Stickies" at the top of Forum subsections... there will be a lot of condensed good information within those posts. And also use the search function to find posts where others have talked about the same things you seek more information on (i.e. "sleep problems" or "coughing"). And, as you've just done... post questions, here. My wife has not had regular issues with the coughing that you describe from your father. For those times when she begins to "gurgle", we use a device called a CoughAssist to aid. It allows an inward pressure (like taking a deep breath in) and an outward pressure (helps create the same feeling and function as coughing). This often clears any difficulty she has with mucous buildup in her lungs. I'll leave this to others with more experience to reply in more detail.

Again, I'm sorry that you find yourself here. I understand how difficult it can be to watch someone you love deal with this terrible disease. My best to you and yours...

Jim

 

[lgelb]

Kripa,
What medications is he being given? Likely, there is a better combination for him.
I would question both the vent settings and the humidification level to hear that he is coughing so often. He could also be coughing due to lack of sleep so it is a cycle.
Is he getting enough nutrition through the tube? Does he sleep during the day, doze or is he alert?

Best,
Laurie

 

[kripa]

Dear Laurie,
Thank you for replying back.
We have been doing our best in order to provide all that his body requires in his diet. My elder sister is in USA ans she also has been providing dietary supplements like Ensure( nutritional powder),anti- oxidant pills .

When he was diagnosed with the disease in 2013, the doctors in Bangkok recommended Riluzole tablets . Even then we were very much aware of the fact that ALS has no specific medicine to help cure the disease and the subscribed medicine would at least help slow its progression. So with this faith that it will not be as progressive as it should be, we started giving him the medication. We continued the medications along with the best possible care we could give him from the limited resources provided by the hospitals in Nepal.
It was only last year when his body accumulated too much carbon dioxide. He used to get very drowsy through out and slept almost 12 hours a day. We weren't able to figure out the reason behind his drowsiness the level of CO2 had gone way up than normal. This had stopped the oxygen flow in his body and he had to be immediately operated to get a tracheotomy. Since then has been on a bi-pap machine and its been 9 months today.
Now, he is not often drowsy and sleeps for 4 to 5 hours at night and maybe an hour or so during the day. However, his body's intake of medication being too high , he does not have the strength as compared to before. He is able to move and do limited things such as walk a few distance and go to restrooms when required.
The problem he has been facing now is he has very hard time sleeping. He is very restive and we have to do suctioning every 20 to 30 minutes at night.
The sleep medication that he has been taking are Clonaz 0.5 ,Mirtaz 7.5 and Nitrest. The doctors here have doubled the intake of those medicine but still no signs of improvement in the sleep department.

Regarding the vent I am not certain about the setting as the doctors have set the required rate when he was hospitalized last year. However, we have been informed that he has minimum support provided from the bi-pap machine.
Please do let me know if you think we should do anything that is necessary from the things we have been doing .

Thanks once again.

Regards,
Kripa.

 

[kripa]

Dear Jim,

I am so very sorry to hear that your wife is also diagnosed with ALS. I completely understand how painful the process is.
I am very thankful that you took out time to reply and share your insights. I appreciate it a lot. I will definitely go through the Stickies you mentioned in the e-mail and use the information accordingly.I was wondering if you could provide me a little more detail regarding the CoughAssist your wife has been using. Since we have no access to such advanced equipment in Nepal. My sister in the States and I could talk to her about the equipment you mentioned. Does the machine has a model that needs to be adjusted accordingly with the types of ALS patients or it is used generally for all types of patients?

Looking forward to hearing from you.

I pray that you and your family is bestowed with all the strength and faith to fight the disease.

Best Regards,
Kripa.

 

[JimInVA]

Kripa,

The CoughAssist that we use is by a company called Respironics. If you have access to Google, you will find a good number of informative videos posted online. The one we have is a Model CA3000. There are few settings that are easily adjusted... and there are several instructional videos available. We, too, have a suction machine... but have never used it... finding, instead, that the CoughAssist currently is good for our needs.

Jim