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Zina Perry

Jan 5, 2008
Loved one DX
I have posted a few times but read and gain more knowledge from all of you each day. My question is if anyone other than my husband Mike begin with problems in the respiratory? He had his second opionon in Dec. of 2007 and when we visited the doctor he agreed that he also thought that it was not ALS. He did a muscle biopsy and after that he agreed that it appeared it was ALS. Now, Mike is totally bipap dependent and the last couple of days his oxygen levels have gone down to 84 for a brief period. I know this is not good. He also had neck surgery in March of 2007 and I thought that it could have paralayzed his diaphram. Supposedly, they had the surgeon look at the MRI and he said it was not. Just looking for answers. Have and good weekend and I will continue to pray for all of you and your families.

God Bless,
Zina Akin Perry
Rusk, Texas
Zina my MRI showed spinal atrophy between C3 - C5 which if I remember correctly is where the control of the diaphragm lies. Since May 2007 my FVC has dropped 2 points every 3 months. Does it mean anything? I don't know. I have since started doing breathing exercises daily to see if I can improve it on my next visit.

As I'm sure you've read on here ALS is a diagnosis of exclusion. A muscle biopsy excludes muscle related issues. What did the EMG show? A quick search of the net will show the criteria for diagnosis of ALS. There are also cases of herniated disks mimicking ALS. I would post a link but until such time that links are allowed unmoderated I have decided not to. I apologize for that but send your concerns to David.
When I carried Mike for the second opinion he had been tested for nearly 2 weeks in the hospital for every disease that they could test for. I understand that they rule our other diseases and then if nothing is found they give you the label of ALS. When we went for second opinion, the doctor said after doing the EMG and other test. He stuck needles in his chin, arms, ankles and stomach. He stated, now I know why you think he does not have ALS. We need to do a muscle biopsy. After the biopsy, he said Mike had lost 30 per cent. He started him on Rilutek and 1200mg of vitamin E. Since that time Mike has become dependent upon the bipap and has no appetite. I called the doctor and we would have to travel 180 miles to be tested again and at this time I do not feel he could make the trip. Thank you for your concern.

Dear Zina

Everyday "I" question could it be something other than ALS? But, in my husbands case, after two separate leading university ALS Centers in different states, both clearly showed PMA classification of ALS. I was told his classification, PMA, was the "better" one, as progression was slower. Unfortunately, his is all upper body and diaphram involved and with this large muscle that controls breathing, he is in trouble.

I do not know his oxygen level, but FVC only 24% and hospice has been called in for eval in our home. They came yesterday. Lovely, kind and informative but we are on "information overload". My husband stopped working as of Thursday and I need to get paper work started for social security. He is 58 yr. old.

All these things that we all hoped would never happen to us at this age.

You are a loving wife to Mike and I pray today for the disease to slow down and not progress and if possible, a cure to be TOMORROW!

Take care of yourself also.

Dear Zina

I do not know his oxygen level, but FVC only 24% and hospice has been called in for eval in our home. They came yesterday. Lovely, kind and informative but we are on "information overload". My husband stopped working as of Thursday and I need to get paper work started for social security. He is 58 yr. old.


My husband is 58 years old also. His FVC is at 25% and his oxygen level usually runs between 82 - 88. He is so weak that he sleeps most of the time. We recently went on vacation and out of 5 days he stayed in our hotel room 4 of those days. I talked him into letting me push him around Niagara for a day and he really enjoyed it. But there was no way that he could have done any walking.
Don's disease has attacked his lungs, upper body and swallowing. He is still having terrible problems with panic attacks when he puts his Bi-Pap on. I am hoping when we go back to clinic on June 24th, that they can help us resolve this Bi-Pap problem. What I found interesting though......while on vacation, he could sleep all day long with the Bi-Pap and did not have any panic attacks. Was it sheer exhaustion? or was he relaxed enough to accept the Bi-Pap?


Has your husband tried the different "masks" for the Bi-Pap? My husband first tried the nose pillows, but he could not tolerate them. He then went to the mask that fits over nose and mouth and that seems to be better. I believe there is a third mask, but can't remember the description. It can take a while to get used to.

Wish you luck!
I tried 4 different masks before I found one that did not hurt my face overnight and that I felt comfortable wearing. The nose pillows are also another option that some have tried.
This is just one of the many sites that show the variety of masks and nose pillows that are out there. It is important that he find one he will wear and that he is comfortable with using.
If you sleep with your mouth open, the nasal pillow cannot be used. It took Mike a long time to get used to the bipap. He tried several masks and had problems with pressure sores on the bridge of his nose. He could not use nasal pillow at all at first, then after the sore on his nose got so bad and they delivered a new bipap(the old one slung a rod) we tried the nasal pillow again and there was not as much force with the new machine. He however does have to sleep with the ResMed full mask at night because he opens his mouth when he sleeps.

I talked with Mike today about a vent and tube feeding and I know we are not far away from both of these. He wants to live and see our grandchildren grow up and yes it may be possible, but with a different quality of life. He has a lot of questions about the vent and I will get someone to come out tomorrow and explain. His number one concern is CAN I TALK? . He also, sleeps alot and is very tired. He does not eat, but drinks Resource 2.0 and lots of tea. For those of you that can still travel, go and see the world and enjoy what God has created. We never know what tomorrow may bring. Thank all of you for your comments and God bless each of you.

Zina Akin Perry
Rusk, Texas
breathing support

Thanks for the link to the different breathing masks. We will look this over today & see which one we should try next.

Zina Hi
I'm sorry for the problems your husband is having. My Dad's ALS began with respiratory problems also and he has a lot of atrophy in the chest, back and diaphragm muscles. Not Bipap dependent tho'. In the UK a lot of people use NIPPY particuarly helps some people at night. I'm sure you already know about this. It does sound like you've been messed around in the diagnosis I hate to hear of people being told "You don't have it" "Now we think you do have it." It's hard to diagnose sure, but then good neuros can diagnose and good neuros don't open their mouths until they are sure and get another opinion from another really good neuro! And when you look at it like that it's not so hard after all... Speaking with a bit of expreience here because it's familal with us and we have 4 maybe 5 family members who have had it so we know what makes a good neuro!
You're in my thoughts and I wish you all the best.
Thanks for your reply. This is the first case of respiratory onset that I have heard of besides Mike. He is beginning to keep me up at night and I get up this morning and read your post and you mention NIPPY. I am not familiar with that. Can you tell me more about it please? I am in the process of making arrangements to carry him for another EMG and will have to travel about 180 miles. This will be a long trip with someone who is bipap dependent and has to potty every 30 minutes. My question is? do we use the Men or Women rest room? New doors open every day and I will worry about that problem when I face it. Please stay in touch and I will pray for your family and also for a new medicine or cure for ALS.

Have a nice day!
Nippy is the name given to a range of ventilators that seem to work for people here. I think from what you say your husband has a ventilator that suits him. A range of
ventilators can be used, such as the BIPAP (Respironics), Nippy (Thomas Respiratory
Systems), DP90 (Taema and Bromptom Pac (Pneupac). I truely do not know which is better. I have read the following:

'In most individuals, ventilation is initially
needed only at night. If respirator muscle
weakness progresses, then use during the day
may be needed. Most people are able to
quickly acclimatise to nasal ventilation and
find their sleep quality improves.
One study (2) showed that people using Bipap
survived for significantly longer than people
who could not or chose not to use it, but that
there was a need to assess quality of life.
The need for non-invasive ventilation should
be determined by a recognised sleep studies
CPAP (continuous positive air pressure)
Continuous positive airway pressure” (CPAP)
is a mask and compressor system that
resembles nasal ventilation but delivers a
constant pressure rather than breathing
support. This treatment is helpful in
obstructive sleep apnoea as the pressure acts
to hold the upper airway open."

I am always reading this stuff to try to help my dad in the future and I use it to ask the neuros what we might need to do as time progresses. You are further down the line than me and probably know a lot more than me! It is rare to start with these symptoms. My dad always had some degree of chest problem even as a kid that was his vulnerable area and he feels the ALS has targetted him where he has a congenital weakness.

Do you have good support? You know how important it is to look after carers: please look after yourself- give yourself treats and breaks.
Thinking of you
Diaphragm problems

Yes, my husband's first symptom was a paralized diaphragm after a back fusion operation. Prior he had sleep apnea, but no breathing issues until this back surgery which left him with a paralized diaphragm. After a couple years, other symptoms started with weakness in arms, hands. Also, husband had leg movements uncontrollable jerking most of the night following this operation.
2 1/2 years ago, followed the slurred speech, which gradually was a wait and see with our neurologist and after a few more symptoms of weakness in the muscles, along with tongue fasculations, husband was diagnosed with ALS. Never did husband loose his ability to move his arms, hands, legs, and to walk though.
The respiratory issue was hard for my husband to breathe since he only had one lung functioning due to the diaphragm paralysis. He changed from a c-pap machine to a bi-pap machine due to severe headaches (caused from lack of oxygen).
Hope this information helps you some way.
Sorry you are experiencing this dreadful disease and are here on this site for help. But many here know first hand what ALS is all about and can give you advice since they have been through this battle.

Hugs and Prayers,
When you say he has to potty every 30 minutes are you just talking urinating?
If that the case can't you just carry a jar and let him go in that instead of worry about finding a bathroom and which one to use. They also have self catherers for men, I know some of the men on the forum use them.
You can find past post and links to websites where you can get them.
How to help men with their urinary problems

For those that may be interested, there is what is called a condom Cather that men can us in conjunction with a leg bag. This allows them the freedom to go anywhere and not have to stop at a public restroom, except to empty the bag occasionally. You can see some examples at:

They also have the collection bags and other products that can handle all bodily functions.

If you ask them they will even send you a free sample so you can see what works best in your application. "The Extended Wear Urinary External Catheter", has adhesive on the end to hold it in place and comes in several sizes.
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