Mom newly diagn. today

[dianelynn17]

Hello Everyone,
I am new to this forum but I sure could use some help & good advise.
I sure would appreciate all you could give to me. My Mom was diagn.
with ALS. I have read alot about it. My Mom stays with My sister
and brother. She has her own lil place. She is using a rolling walker
and her speech is hard to understand alot of the time. We have a
speech therapist and pt & bath aid come in twice a week. I quit my
job so i could be there for Mom. She is very sharp. She laughs and
has a great sense of humor. We go on thursday to discuss with the
doctor her resourses and the disease itself. It all sounds so sad. To
know in your head what all is happening to you is far beyond me. I want
to be there for Mom & help in all i can do. My sister and brother are a great
help so its nice to have us share the details that all will have to be done now
and the future. Can you tell me what we will need later and if anyone could
fell me in on what to more or less expect from here. I want to have a possitive
attitude with this. Its going to be hard, i know, but we can do this.
I thank you for your help. Long road ahead for us.

 

[Lindoglvr]

Hi Diane,

I'm sorry about the diagnosed of your mom of ALS today. You have found a wonderful source of support by coming to this board. It has a combination of caregivers as well as people with ALS and those of us, like me, that most likely have it, but are awaiting the final diagnosis.

Welcome to the forum, wish it was another type of welcome we could give you, than for this horrible disease.

God bless,

Linda

 

[Al]

Hi Diane welcome to the forum but sorry you have to be hear. You have a speech therapist and a pT so I would expect that you have been in contact with ALSA if in the US or ALS Society if in Canada. They can help with what aids you will need down the road for your mom. How long ago was she diagnosed and how long do they figure she had it before DX? AL.

 

[Bill60]

Great job

Your Mom is blessed to have children who love her enough to make sacrifices... As far as advice goes; I wish someone would have told me when I was diagnosed not to be so reluctant to order a power wheelchair and other things that would have made life easier for my wife and I. I'm glad she is at least using a walker, but if she needs it, it's time for you to order a power wheelchair - I recommend Permobil, I've had two and they are comfortable and durable. The ordering/approval process takes about three or four months so try not to wait until it's a must-have. The second thing I would recommend is that she gets and begins using a C-PAP breathing machine every night while she sleeps. It took me two or three weeks to get used to the C-PAP, but now I can't sleep without it and it will make her feel more rested and energetic in the morning.

 

[Al]

Hi Bill. If you are using a CPAP you probably have obstructive sleep Apnea and not any breathing issues with lungs or diaphram yet. CPAP is usually not used with ALS patients with compromised lung function because they have a hard time exhaling against the Constant flow of the machine. A BIPAP cycles to a lower pressure to let the lungs deflate. Usually a sleep study is done to find out which is needed as was probably dome when you got your machine. AL.

 

[Bill60]

Al, maybe I was mistaken, I may have a BI-PAP because it does not have constant air flow, it cycles to match the way I would breathe normally - if my lungs were strong (127%) like they were when I was diagnosed 10 years ago. The last time I had a breathing test, my capacity was around 35%.

 

[Al]

I'd bet it is a BIPAP then. Easy to confuse because a lot of people have a CPAP for sleep apnea and you hear them talk about the machine that helps them breathe at night but it's not quite the same as ours. Cost being one. I did have a CPAP before Dx in 2003 and it was $1700 and the BIPAP is $8000. Thank God for health care. Mine cycles 18 times per minute and gives me 18 units in and 8 on exhalation so the lungs don'r collapse completely. I can not lie down with out it. I'd be toast before too long. Hope you're having a good day down there in Texas. AL.

 

[dianelynn17]

Linda,
Thank you so much for just being there for me. It sure helps to have you all
on the other end. We go tomorrow to discuss Moms disease & its resourses
with Her Neurologist. He is from Cleveland Clinic and is just wonderful. The first
neurologist we went to did some tests on Mom & said it was dementia. I was looking
at everything for this. It was so sad then we decided to go for our second opin.
and so glad we did. Mom is so sharp so we thought that this couldn't be it.
Mom started noticing and we all did too, around dec of last year. She was just
starting to walk slowly and her speech was slowing down. We all knew something
was wrong. Please say a Prayer for us tomorrow. Will let you know what we
learned. One day at a time...Just lost My Dad to lung cancer in 2004 so its been
very hard on all of us.
Thanks again for your kind words.
God Bless,
Diane

 

[dianelynn17]

Hello Al,
Thank you for being there for me. We see the Neurologist tomorrow to talk about
Moms diagnosed and our resourses. We were told it was motor nuerone disease but didn't
know what type. So we had blood work on Mom, emg, & mri. Dr. Gretters called me
yesterday & said everything is pointing to LGD's. So My Brother & Sister and Mom and I are going at 11am to find out everything for now. I have read about this disease
and was praying it wasn't that. But...We will get thru this as we got thru my Dads
lung cancer. It was hard and it wasn't too long ago. 7/2004. Now Mom. It so hard
at times to keep a happy face. I know the road ahead will be hard but with Family
and Friends & Our Lord..we can do this. We will make it the best we can for Our
Mother. She is going to be 73, Dec 5th. Thanks again for being there for me, Al.
I need all of you now.
God Bless You,
Diane

 

[dianelynn17]

Hi Bill,
Thank you so much for your kind words to me. We are very Blessed to of had a
Wonderful loving Father..and our Loving Mother. We will do all we can for her.
Our appt. with her neurologist is tomorrow. He will tell us about LGD and our
resourses. Long road ahead but with Family, Friends and God..we will make it.
I quit my part time job to be able to be with Mom. To help her in anyway I can.
It also helps my Brother & Sis in law for they are such wonderful people to have
taken Mom in. They love & Adore her. We are all so Blessed. I am sure I will
be asking alot more questions as the time goes on. Do you have ALS? Or anyone
in your family Bill?
Thanks again,
God Bless you,
Diane

 

[CindyM]

Hi Al-thanks for the description of C-Pap and Bi-Pap. I used a c-pap all through the 1990's but then found I had energy and was able to stay awake all day so I gave it up. Always wondered how the two machines were different. Lately I am falling asleep again during the day and it is hard to summon the energy for a full day's work so we'll see what they say when I go back the week after next...

 

[Bill60]

Hi Diane. Yes, I've had ALS for 10 years.
Hi Cindy. You should try taking Provigil to help you feel more awake and alert during the day. It's the only prescription I take or have taken (for ALS symptoms) since I was diagnosed ten years ago - it REALLY helps combat the fatique of ALS.

 

[dianelynn17]

Hi Al,
We are going to see a pulom. about a bipap Dec 20th. Can you tell me alittle about this, please. Also Mom is going to start taking Rilutek. Have you or anyone else
tried this pill? Doctor said today that ALS is so different with everyone. It could go
long or progress fast. you have had this for 10 years now? How is yours doing?
Any machines or wheelchair or anything you can tell me about the disease.
Thanks alot.
Diane

 

[Al]

Hi Diane. I've had this for 3 years since Dx but for a year before that for sure so it's been 4 or 5 years anyway. Bill 60 has had it for 10 years. I just started using a walker a week or so ago and have used a wheelchair on occasion if we are going somewhere where there is a lot of walking. I use a BIPAP and it is no big deal. A machine a bit bigger than a loaf of bread and a humidifier that sits next to it and a 3 foot hose and a mask that goes over my nose and mouth. Some people prefer just nasal pillows or just a nose covering mask. Most people have to use a chin strap with those to keep their mouth from falling open. The respiratory technician or Doctor sets up the machine to your mom's breathing patterns and she's in business. Some people have a problem with the mask but they RT can usually help with problems like fit and claustrophobia.
I take Rilutek. Some do, some don't. I personally take it because I think it might help and the side effects don't bother me too much. We are all different and from about 1200 members on this site there are probably not 2 that are having the exact same things going on. It is a very mysterious disease indeed.

 

[Bill60]

Hello Diane. I don't really have an opinion about Rilutek, maybe it helps, maybe it doesn't, who knows? I've had ALS for 10 years and I've never taken Rilutek, but others have lived as long or longer than me and they do take it.
I think that Al would agree with me, and studies have also shown this, that the best life extending item for ALS patients isn't a drug, it's using a BI-PAP machine consistantly. We mostly die from breathing related problems... The BI-PAP expands and contracts the lungs fully, something that people with low breathing capacity cannot do on their own. Also, I don't think most ALS patients or caregivers realize just how many ALS patients die from accidents... You can do everything that your Mom's doctors recommend and your Mom could still fall and hit her head, break a hip... Believe me, I was and to some extent still am, the most stubborn ALS patient. I was 35 when I was diagnosed and I fought using a walker and wheelchair with every ounce of my pride - stupid and very painful! I fell down the stairs and got a severe concussion, I fell in the shower and hit my head crushing four tiles, I fell trying to sit down on the toilet and broke it into three pieces, I fell and broke my shoulder and twice I fell and broke teeth. I have a close friend whose Mom had ALS for a year and she died from falling and hitting her head. The famous baseball pitcher, Catfish Hunter had ALS and he also died from falling and hitting his head. This is why in my first post to you, my first recommendations for your Mom were the BI-PAP and ordering a wheelchair. Even if she receives the chair and doesn't need it or use it all the time, at least she'll have it there for the days she feels weak...