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1Debbie

New member
Joined
Sep 7, 2013
Messages
3
Reason
PALS
Diagnosis
09/2013
Country
US
State
PA
City
Altoona
My wonderful, kind and gentle spirited husband began having some difficulty with his voice, tone became quiet and soft when we were praying together, he said it was allergies, later he told me he didn't know what it was and didn't want to scare me as my first husband died 10 years ago and we have only been married for 4 years. Then I noticed the next week he was slurring his speech and finally I said Rob you are having trouble what going on? He then related that he was having trouble talking. We went to a neurologist the next day and he was diagnosed with Primary Progressive Aphasia and then Frontotemporal dementia in Pittsburgh with possible ALS. This all began in June and has progressed to the point where he can harldy speak at all, is taking pills with applesauce as they do not go down easily and at times choking on liquids. Rob told me he was having this sensation that his lungs do not fill up with air so to the pulmonologist where he says capacity is at 50% but ABG's show no Co2 retention. Jumping muscles in different areas of his body however main area seems to be speech and swallowing. Rob also has PBA with periods of crying and laughing that are over the top. He knows and realized everything happening to him and actually it seems as though something new happens each day, he can't smile, tongue goes to the roof of his mouth when he sneezes, trouble blowing his nose. I am here for him, blessed that God put us together and need advise as to what to watch for and how to make sure that I am doing all that I can for him. He was put on Rilutek and I have put him on Vitamin E, CoQ10 and coconut oil orally as well as rubbing it on his muscles daily, which after a week seems to have stopped some of the muscle jerking which was very bothersome to him. Our faith is strong, our love is strong, our heart are breaking but we Trust in God and know that He is with us. Rob goes to speech therapy and had videofleuroscopy is it normal for this to progress so quickly? I read different things different places.
 

bowser

Distinguished member
Joined
Aug 22, 2013
Messages
144
Diagnosis
03/2011
Country
US
State
Arkansas
City
Cherokee Village
My wife's ALS progressed VERY QUICKLY regarding her speech and swallowing.

When we went to our first ALS support group meeting, Margaret was one of the few who could walk with just a cane but needed an ipad to communicate as her speech was gone.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
very sorry you have to join us here, but we will all support you as much as possible. you will get a lot of good info in this forum, helpful hints and shoulders to cry on.

Everyone's progression is so different--you just can't compare one to another. We have members pass in just a few moths, and others not for many years. as you read the posts, you will get an idea bout different people's level of the disease.

try Nuedexta for the laughing/crying. that is emotional labiality, and common. He was also diagnosed with FTD? we have a section devoted to that an some very helpful and caring cals who can help you thru that tough situation.

Please, ask anything and don't be shy.
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
My husband was D X on 9 03 09. There is life after an ALS D X, it is just different.
 

1Debbie

New member
Joined
Sep 7, 2013
Messages
3
Reason
PALS
Diagnosis
09/2013
Country
US
State
PA
City
Altoona
HOw old is your wife? Rob is 54 years old, talk a bout life changing. We went to our local neurologist today, he can't believe how rapidly he has progressed in just a few months. He is strong in his limbs still but the speech is almost gone, we will be going to an ALS clinic in a few months in Pittsburgh and I am not sure what to think of this but hoping it makes it easier as I drag him to different doctors and therapies all the time now so possibly everything in one place will help. He just started Rilutek today praying no side effects, we are fortunate his insurance payed for it only a copay but it would have been over 2, 300.00. Is your wife on this medication. Thanks for your input and help
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,728
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
sorry to see you join us Debbie

everyone really is so different, so I'm sorry we can't tell you what to expect, I wish we could as I would like to know this myself!

my husband had slow shoulder muscle wastage for several years before his bulbar symptoms started. we didn't realise anything was really wrong with his shoulders and possibly he had some hip wasted from then too.

since June last year when the bulbar started things have become faster.

He always has some fairly rapid (at least it seems rapid enough to us) progression, but not always in the same areas of his body. His speech kept deteriorating til xmas, then it seemed to stay much the same for months, but in that time his arms and hands began to go down, and then breathing muscles. Now his speech is declining again, and the tongue wastage is very obvious.

He has all those symptoms you describe too, emotional laughing, nose blowing problems, smiles are not what they were. I'm truly sorry when I hear anyone watching just what I am watching happen to my husband. It's really tough.

Also his legs are becoming affected but he is still walking unaided, but he has coordination problems and twitching now down to his toes and very exaggerated reflexes.

He tried Rilotek but had awful side effects and stopped after less than a month. His arms and hands deteriorated rapidly whilst he was on it, so I don't know if he would have been one of the lucky ones it would have worked for anyway.
 

Patience2

New member
Joined
Sep 29, 2013
Messages
5
Reason
CALS
Diagnosis
07/2013
Country
US
State
AR
City
Maumelle
So sorry for your husband's diagnosis Debbie. My husband was just diagnosed in July 2013 with symptoms starting in March 2013. His decline has been in his arms and legs and now breathing. He is still talking and eating without swallowing problems, but his prognosis is bad because of the amount of time from symptoms to diagnosis was so short and the doctors tell us that from diagnosis to end of life will be just as short. My mother in law and learning as we go. there are a lot of knowledgable people on these forums.
Praying daily here in Arkansas.
Patience
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
Patience, your Doctor is full of you know what. He is wrong wrong wrong.
 

Patience2

New member
Joined
Sep 29, 2013
Messages
5
Reason
CALS
Diagnosis
07/2013
Country
US
State
AR
City
Maumelle
Patience, your Doctor is full of you know what. He is wrong wrong wrong.
ok Sadiemae, are you a doctor? suppose you explain the fast decline. We have seen 3 of the top doctors in the country as far as Neurologists go, Money is certainly not a problem here, so we have flown them in here to see my husband and all of them have said, don't worry about the medical side of things, spend your 90 to 120 days with your family. So that is what we are doing. you should take your own advice about compassion. I am using this post as a way to vent and seek advice, so unless you have something to really contribute, go post on someone else's thread.
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
So sorry to have offended you. It was not my intention at all. I am of course not a doctor, just a Caregiver, who has corresponded with hundreds of PALS and CALS, and have never before heard this. Again I am very sorry.
 

Patience2

New member
Joined
Sep 29, 2013
Messages
5
Reason
CALS
Diagnosis
07/2013
Country
US
State
AR
City
Maumelle
So sorry to have offended you. It was not my intention at all. I am of course not a doctor, just a Caregiver, who has corresponded with hundreds of PALS and CALS, and have never before heard this. Again I am very sorry.
My temper is very short today or 2:30 am in the morning. You haven't offended me. I am searching for more answers. we had 5 opinions before we finally gave in and took their advice of living the next 90 to 120 days. All 5 of our neurologist HAVE heard of ALS progression this fast but have never had a patient of their own to be this way. So when they say that prognosis is based on the past that means exactly that. I am frustrated and overwhelmed because my husband walked into the ALS clinic on July 17th and now here we are 80 days later, bedridden, completely paralyzed, G-tube for extra nutrition, wearing Trilogy machince 24/7 at the highest capacity and now we have pneumonia. Yes I think our doctors knew what they were talking about.
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
Nobody really knows when their time will be over. Just make the best of each day that you can. I am truly sorry all that you are going through Patience. But, I can absolutely can guarantee that under any circumstances would Sadiemae try to upset or offended anyone onf this forum. She is not that kind of person and tries to show compassion to all. We all have short tempers with this and are understand tremendous stress. Let's not squabble about stupid stuff and help each other out. Sending you a virtual hug. Truly wish I could do more. You will be in my prayers. Kim
 

jellis86

Distinguished member
Joined
Jun 22, 2012
Messages
254
Reason
PALS
Diagnosis
02/2013
Country
US
State
WI
City
Eau Claire
Debbie, sorry about your husbands diagnosis.

I was 53 when some my symptoms of slurred speech started and I was officially diagnosed the day after my 55th birthday, Feb. 14, 2013.
My last FVC, about 3 weeks ago, showed me at 68%, but I've been as low as 60% back in early April. I have been on a bipap at night since March. I have some difficulty with thin liquids and foods have to be cut up very fine or ground as my tongue is quite atrophied.
So far the only other area, aside from bulbar regions, affected on me is my left forefinger/thumb is quite weak.

I take Rilutek and Nuedexta for lability, also a lot of the supplements on the Deanna Protocol, AAKG, AKG, Niacin, CoQ10, GABA, and Glutathione. Plus a B-complex, vitamin C and Vitamin D. For added calories I also take an isolate whey protean shake everyday.
All of these I have to take via my feeding tube which I had placed in May.

I need to start adding coconut oil to my daily mix.

I believe God has a purpose for all of us, even though we probably have no idea what it is.

Life changed for my wife and me but it's still life and we try to live each day to the fullest extent possible. There's no doubt that some days are worse then others, but that's just the nature of this beast.
 

jellis86

Distinguished member
Joined
Jun 22, 2012
Messages
254
Reason
PALS
Diagnosis
02/2013
Country
US
State
WI
City
Eau Claire
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