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.:cry: 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 dx 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]

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 dx 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 dx 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 dx 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 dx 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 dx 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...

[CindyM]

Good advice, Bill. It will be interesting to see what the Docs say about my sleepiness. We'll know soon enough! Thanks for the advice on bipaps and wheelchairs, too. I believe that about the accidents. I read somewhere that elderly folks often never recover from falling and breaking a hip. Well, most of us are not in our 80's but we are still fragile so it makes sense to avoid falling where possible.

[CindyM]

Says the lady who fell 2 times last month and is still nursing a sprained ankle. Oh well, do as I say, not as I do! :-D

[sara06]

Diane,
Honey I am so sorry to hear about your mom's dx. She's lucky to have you. I remember the day my mom was dx like it was yesterday. It hasn't even been a year yet. She just passed in October. Let me tell you, you have a great attitude. Staying positive can do so much more than you realize. It won't always be easy to look at the bright side...just stay strong and keep your head up. Take all the help you can get, rest when you can, get out of the house when you can, and use every resource available to you. The BIPAP is a great machine. My mother hated it at first, but it only took a week or two for her to get used to it.

I wish you and your family a Merry Christmas!!!

[dianelynn17]

Hi Sara,
Thank you so much for writing back to me. How old was your Mom? How long did she live after she got her rx? My Mom is 73. Her birthday is today. We had so much fun with her. We took her to Red Lobster & she made us all laugh. She has a great sense of humor. Did she live with someone? Can you tell me alittle about her and how you took care of her. Her last days..Hospice? I would appreciate all you could tell me on what helped her. I have nothing but good about the BIPAP. I am going to look more of this up. Thanks again for your kind words.
I wish you a Merry Christmas also.
Diane

[sara06]

Hello Diane,
Tell your mother I said HAPPY BELATED BIRTHDAY!!! My mom was diagnosed 12-14-05 when she was 47 and passed 10-28-06 at 48. I don't know if you've read any of my other posts, but ALS is hereditary in my family. My grandpa, uncle, great uncle and mother passed from it and 2 of my mom's cousins have it right now. My grandfather was 44, my uncle was only 26, my g. uncle was 64, and my mother's cousins are 49 and 50. Noone has lived more than 13 months after their diagnosis. Sad really, that it has to be so short...but at the same time, they don't have to suffer as long as some people. I lived at home (still do with dad and daughter). I graduated from cosmetology school last October, we already knew something was wrong. My mom was about 140lbs when healthy and at the time of my graduation she was about 105. She was my model for our class nite and she had to use me as a crutch so she didn't trip and fall. My dad took her on a two months vacation around the U.S. , something they were planning for retirement. By time she came home she was using a cane constantly, it wasn't too long after that she was in a wheelchair. I held off on getting a job, I still don't have one actually, I figured I'd take the rest of the year off... I was financially able to stay at home and take care of her. She did not want nurses, my father worked full time, my brother worked full time and lived an hour away, and my sister has a husband and four small children... so it just worked out and it made sense. My grandma and my sister helped out as much as they could. Since my grandma and mom had gone through this disease twice already, they had a lot of insight on what to expect which was really nice but very scary..to know what was coming next. However, it had been 30 yrs since my uncle passed and I think they thought they were professionals by now. We didn't exactly use all of our resources. But we did what we could and my mom was happy and as comfortable as she could be. She started out with just a CPAP machine, basically the same as the BIPAP but there is a difference in the air pressure. She didn't start to use that until she came home from her vacation. It worked wonderfully right up until she took herself off it for two days to attend my brother's wedding without embarrassment. That turned about to be a near fatal mistake. We ended up taking her to the ER the night after my brother's wedding. She stayed there in ICU for 4 days. Her carbon dioxide levels were high enough to have killed her. They got her stable enough to take home, and for the first time she was bed ridden. We had hospice in for 4 days. They kept her very comfortable. My mom kept a smile on our faces all week. She made funny comments everytime she spoke. And on that 4th day home from the hospital, I noticed her breathing was very shallow. I called all of the family, and she passed that day with everyone here by her side. Wow this is a really long post.

Basically the progression of my mother's illness was so fast, and the process of getting any kind of equipment was so lengthy, she chose to give up on some of it and go without. She had really wanted a powerchair...but they dinked us around so much that it was too late. We had the basics, the shower chair, the manual wheelchair, the toilet extension (which she hated and wouldn't use), the hospital bed. That was about it. I don't know how we got through it, we just did.

[dianelynn17]

Hi Al,
I have some other questions also about what you drink. Mom has a hard time swallowing and I don't want her to dehydrate. We have thicket we add to her
water and coffee but what else can we make or buy that would be good for
her to drink & easy? What are some good foods. We mostly need the drink.
I would appreciate all the help on this you could give to me.
Have a great Sunday & thank you,
Diane

[Al]

I'm not having any swallowing issues yet other than occasionally swallowing too much red wine. Tomato juice is a bit thicker and some brands are thicker than others so you could try those. Can't remember if you are in the US or Canada but here we get Mott's Clamato which is a nice change from tomato and mixes real well with Vodka. In some asian markets and specialty dept's of bigger supermarkets you can buy fruit nectar. It is juice blended with the pulp and is thick and really quite tasty. Try a couple of them and there is always the make your own smoothies or milkshakes. Try some of that and maybe some others have ideas. AL.

[dianelynn17]

I am in the US. You aren't having swallowing problems? That is so good. Its not fun at all. She just can't handle a milk products. She chokes. I did get thicket and I and My Sister will start making smoothies for her. Thanks Al.
Diane

[dianelynn17]

Hi Sara,
I have a question and thank you so much for wishing Mom a happy birthday. How very sweet. My question is : Did she have problems with swallowing? My Mom is and I was wondering if you have any ideas on what Mom could drink. I got thicket to add to her water and coffee. She doesn't handle milk products very well. She chokes. I just don't want her getting dehydrated. Any suggestions?
thanks alot.
Diane

[dianelynn17]

:-? My Mom's speech is really getting bad. What do we
do about this. Speech therapist said there is nothing
more she can do. Bull. WE will be talking to Hospice
soon and I want to know what they recommend. Its so frustrating
not to be able to understand her. I bet its worse for her.
Thanks for all you can give me advise on.
Diane:neutral:

[Angelgirl]

Hi Diane,
My mom too has difficulty speaking and swallowing. She has a PEG tube which is wonderful for her. Now she is getting the nutrition that she needs. It seemed before she would choke everytime she would try to eat or drink. At least I know she's getting the nourishment she needs. Her speech is gone. I can make out a few words...but very very few. She is now writing everything down on a small whiteboard. I'm very thankful she still has the strength in her hands to write. For now...I would suggest you getting your mom one as long as she can still write. It's not a bad way to communicate.
Angelgirl

[dianelynn17]

Hello all of you,
I know this is a very difficult year for My Family and Myself. First time Mom isn't
spending Christmas at home. She is living with My Brother and Sister. They have
her all set up. I had to quit work to take care of Mom. Fix her meals. We all pitch
in & we r a very close family. It took Mom 1 1/2 to get diagnoised with her als.
She is at the point where we have Hospice helping us. Its not that she is real
bad or at the end, but they come in and help when the person is terminally ill.
We have a bath aid that comes in 3 times a week for Mom, Hospice nurse and
so on. Right now its hard to understand what she says 1/2 the time so we use a
writing board that you can erase on it. It sure helps. She was using a walker to
get around and she was able to wash herself in sink and dress herself. Go to
the bathroom by herself. She is getting weaker so when we called upon Hospice
they got her a brand new wheelchair, hospital bed, & a port a potty. We already
had rails for the toilet for her that she still uses. She has her good and bad days.
The doctor had her on a xanax 2.5 ( 1/2) of a pill before bedtime but that made
her so unbalanced so we stopped it. She is on Riluek that is hopefully suppose
to slow the progress down. Hope it works. She has been on it for about 3 weeks
and has had no side effects. Her mind is in tact which it usually does with Folks
that has als. Just lost my Dad 2 1/2 years ago & we (my sis & I) stayed with him
till the end at the hospice clinic. Now Mom. Its such a hard thing to watch.
We just got a bipap machine today for her for at nite. I notice the mask when
she puts it on that she keeps her mouth open and has to keep getting a kleenex
to wipe the spit. So the Lincare guy told us that is she does do this that he can
get her a full mask. It takes some getting use to. She just has the mask that covers
her nose. Does anyone else out there use this kind of machine and what were
your first times like? I tell her to keep her mouth closed but right now she doesn't.
First time to be used at nite so we will watch and see. Ya know, its so important
to take one day a time with her. She has such a sense of humor and we do laugh
alot. We make memories. We took her out for her birthday and she was making
us all laugh and I looked at my Sister and Said, This is a memory for us right now.
Live for now but get info to help you thru this. I try to keep up with books from
library and this forum has helped me the most with everything. The people here
are amazing and wonderful. They are all going thru just about the same thing
and each one is different. The road ahead isn't going to be very pleasant. Mom
can eat on her own, her swallowing is doing pretty good, its mainly her talking
and walking. She has gained alittle more weight. She was 142 then dropped to
132 and now she is 140 again. Its my good cooking I am sure. Ya right!! :-D
I wake up each morning and ask the Good Lord to give Mom and I a good day.
I go to sleep and Thank Him for it. God and Family has given me the strength
to go another day. Its alot of work. I am beat every evening. I have stuff to do at
home but I am at times too tired to do them. But it could be so much worse. My
Son Michael lives in Defiance Ohio and he is 22 so its not like i have a family of
kids to take care of also. 2 calico sisters wait for me at the door which is a nice
thing to come home to but they want fed right away. My Sister does so much with
Mom just living here. Mom has her own livingroom decorated with her things.
Her own bedroom. We have tried to make it cozy and comfortable for her.
To her liking and I think we all have done pretty good. Now its my turn to take care
of her. I do see these older people out there driving and talking and walking and
even older than Mom and Dad and I sometimes get so upset and ask why?? Then
I see younger kids that didn't even have a chance to grow up and then I think
of the ones that get als that are so young and have a family. Wow. Mom is 73 so
she had a wonderful life and got to see her kids and grandkids, and now the house
is full of kids and family and laughter. Dad was 71 but he also had a full life. Now when
I see these folk I say to myself, God Bless them. I hope they know how wonderful
they got it. I have wrote a book and I am sorry.:mrgreen: Gehshs.
If anyone is using the BIPAP machine or even the suction machine please let me
know what kind & if you had any problems with it and what you did if you did.
You all have a Very Merry Christmas and a better new year. Keep you chins up.
Its hard at times, but just one day at a time and live in the moment with your
loved one(s). God Bless you all!!!
Diane;-)

[dianelynn17]

:-? Hello again,
I forgot to ask in my last post about any suggestions on when we can't
understand what Mom is saying or when she can't write what she is
saying anymore. She hasn't ever used a computer. Any suggestions
would be very helpful. Thank you, Diane:-D

[Jane]

Hello, I am so sorry for all that you and your family are going thru. I was in the same place last year.
Your Mom may not be able to hold her mouth closed, if this is the problem a full face mask for her Bi pap will work better. There will still be some drooling that can't be helped.
When Sis could no longer speak or use a communication device we made a simple picture board for things she needed regularly ...picture of a blanket meant she was too hot or too cold, she just pointed to the appropriate picture. Other picture included a toilet, a vacuum indicated meant she needed to be suctioned. a goalie mask picture meant her mask needed to be adjusted, I am sure you get the idea. Pictures would be different for each person. I used a Sears catalogue for most of the pictures
When she just wanted to tell us something we used an alphabet board, it is slow but works fine.
We set up the alphabet as follows first line a b c d, second line e f g h, third line i j k l m n , fourth line o p q r s t , fifth line u v w x y z. By using this set up each of the lines begin with a vowel and it can speed up spelling. You kind of get to know when a vowel is coming.

I hope these things are of some help to you.

I wish you the best possible Christmas and strength and comfort in the New Year

take care
Jane

[Al]

Hi Diane. I use a full face mask with my Bipap. They do make a chin strap to hold the mouth closed when wearing it if you just use the nasal mask. Your mask supplier should be able to get it and in the meantime if you have a sewing machine get some soft cloth and velcro and try making one. It doesn't have to be fancy but a piece of elastic in the middle would enable your mom to yawn or move her mouth if required. Hope this helps. AL.

[dianelynn17]

Hello Jane & Al & All of you,
My Mom has a full mask bipap now. It really has been helping her alot.
Thank you for your info on this. Also I don't know but since she has been
taking her Riluek(hope its spelled right:mrgreen: ) Her speech and swallowing
has improved to the point where she doesn't choke on what she eats
and I understand what she is saying to me. My whole family does. It
use to be this day would be good and that day I couldn't understand what
she was saying but now its been 2 wks. Thank you Jesus. Each day is a
blessing when she does good. I try to make the best of our time together
which is mon-fri 8 to 5. I love making memories with Mom. This will be in
my heart forever. She is in a wheelchair now and loves sleeping in her lift
chair over sleeping in her hospital bed. We feel whatever is comfortable
for her now. She has a hospital tray that fits her chair and a hospice
nurse and bath aid that comes in 3x's a week. I just have to Thank God
for the Good Days that Mom does have. Christmas was very nice and
memorable and I am so glad My Son, Michael got to spend it with her. Not
knowing how much longer she has, it sure is nice to have that memory too.
Well you all have a Nice New Years and I pray it will be a wonderful one for
you all. thanks again Cindy and Al for your help on Mom. This forum has been
the most helpful place I know.
I do have one question, Mom will be seeing a neurologist that specializes in
als disease the 30th of this month. Does anyone know what we can expect from
this visit? We were referred from her other neurologist to see him.
Its at the Cleveland Clinic. What a wonderful place this is. We are so pleased
with everyone there. Thanks for your help.
Diane:-D

[Al]

Hi Diane. While the clinics can differ a bit on approach they will probably want a full history on your mom so if you have kept records of operations different meds etc. and the names and dates of the Neuro's she has seen it will help. They may want to do a set of EMG and NVC tests as well as blood work. If she hasn't had an MRI and lumbar puncture they may want to do those as well. Hope this helps. Maybe someone else has been to that clinic and can advise more. AL.

[dianelynn17]

Hi Al,
I think you misunderstood me, Mom has been diag. with ALS. She has had all the tests you mentioned. mri, emg, blood work etc. I was just saying how well Mom has been doing on her pill, Riluek. Diane

[Al]

OK. I was just referring to your question about the Cleveland Clinic. I read it as her not having being there before.Guess I better pay more attention. If it was her first visit they may have wanted to do what I had said. AL.

[dianelynn17]

Hi Al,
No, thats okay. I might of worded wrong or that way. Mom is going
back to Cleveland Clinic the 30th of this month to talk to a Neurologist
that specializes in als. I have to say at times...its so sad watching your
loved one go thru this crappy disease named, als. I simply hate it.
Diane

[Al]

We all do. I go back to my clinic the 16th. Probably nothing new but a little deterioration but strange as it sounds I enjoy going there. Weird I know but the camaraderie reinforces me or something. AL.

[quadbliss]

Hey Al,

I also enjoy clinic visits. I have been going there for eight years, and they are my friends. It is more about them learning new ideas from us, than us from them. We end up with all the specialists gathered around in our exam room to shoot the breeze.

Mike

[anne]

Hi Al... I am not at all surprised that you enjoy going to the clinic. Myrna, Olive, Frances and the gang at Sunnybrook are all so wonderful and very supportive. Do you see Dr. Zinman? My mom has decided to have a feeding tube in place and Myrna has arranged an emergency referral for her to have this done. We are waiting for the call. I am really scared and I hope everything goes well. I hope my mom adjusts to it and I hope this will get rid of some of her stress. Anne

[Al]

Hi Anne. Yes I do see Dr. Zinman. Don't be scared about the procedure. I hear it is a pretty routine thing and may take a bit of getting used to when it is in. Tell your mom I am thinking of her and let me know how she makes out. You can call me or post on here. AL.

[anne]

Thanks Al for always being supportive. Anne