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themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
Christmas has left me empty. The season for joy and happiness has been haunted by the thought that this might be the last. Michael has gone down hill in the last six months...He is dependent - although not all day - on the ventilator. It has gotten into his digestive system - so food creates all kinds of problems. Mostly constipation - but terrible stomach pain and spasms. He tries mostly to have juice - since that is what he can tolerate...We juice everything! But with lack of real food - he has lost a lot of weight. He is complaining that an elephant has taken up residency on his chest...

I am worried about what the next six months will bring. I will say though that I am happy the dementia issues have subsides somewhat - at least the raging/anger part - although he does have OCD and will repeat himself 100 times a day...I used to get aggravated with him - now I just laugh at it. See how time changes things?

For any of you all that have been through bulbar als - can you help me with the progression? I don't know how long we have given the symptoms. I have talked with the DR. and of course they won't commit. And I know = they don't know for sure - but...surely they could give a guestimate based on the decline. Its not like it's stop and go...once its on the course - it stays moving forward....
 

cubcake

Distinguished member
Joined
Jul 18, 2011
Messages
270
Reason
Lost a loved one
Diagnosis
10/2011
Country
US
State
Ca
City
San Ramon
Hi mommy.......we are bulbar and in decline, too. Our dementia is different. No rages, just laughing, in your face, at the onset of your frustration. I have no idea how he feels because he hasn't spoken in more than a year and he's not able to use any devices or spell any longer. Not even yes/no hand signals. I, too, wish someone could tell me something. It would be the best and worst news I've ever gotten.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
Life is a guesstamation(sp), all we can do is love, laugh, and hope. You are doing the best you can under the worst circumstance. I commend you and I am praying for you. I hope someone can give you the answers you seek. I wish you peace.
 

panguinjen

Senior member
Joined
Mar 27, 2012
Messages
523
Reason
Lost a loved one
Country
US
State
CA
City
Stockton
Rog is bulbar, I haven't heard his voice in a year, he's on formula through a tube and isn't tolerating one of the two that he's supposed to use. He's lost 90 pounds since August 2011, uses his pwc most of the time, moves so slowly. I help him bathe, dress, shave, get into bed. This seems to be moving faster and faster....

Peace and hugs to us all,
Jen
 

DeansWife

Distinguished member
Joined
Oct 18, 2011
Messages
196
Diagnosis
08/2011
Country
US
State
AL
City
Fairhope
Dean is also bulbar. I to have not heard his voice in almost a year. It's very depressing for both of us. Dean has a pwc that he uses all the time. He needs help with bathing, shaving, dressing, getting in and out of bed and just about anything else. He still sips ice tea but most of it dribbles down his chin as his bottom lip does not touch the glass. He is on a trilogy (bi-pap), uses a suction machine and a nebulizer. He can still use his left arm and stand with help. Unfortunately things change daily. I wake up not knowing what to expect! I sometimes think I would like the answer to when, but then not really. Day by day, hour by hour - that's how I live.
 

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
my husband can talk but it is very hard to understand. I have a phone with a message that he recorded "before" and sometimes when I am sad, I listen to it. he is in a PWC full time, fully dependant on othres for care, can stand to transfer but that is all, eats pureed food and is so skinny. he changes so so slowly which is good and bad--at least his attitude is fantastic.

I feel for the cals who have a pals who is fast progression because that must be incredibly stressful. with the slow progression i have a chance to have a new "normal" for a long time. my husband changes very slowly for several months and then will have a bad month where things change and then level out again. probably not as stressful as a quicker pals. one of my big fears though is seeing him locked in and bedridden for a long time which would be awful for him and me.

hope no one thinks I am bragging about slow progression--there is no good progression and we all face terrible circumstances there is not good progression!
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
My pals got worse as the bulbar got worse. I would say from the onset of personality changes and OCD, it was a year and a half till death. I think bulbar symptoms are a sign of worsening conditions. I am glad that you can laugh now about what ocd does. I had a similar problen with my wife's covers. If they were not a certain way, she would ge peeved. Finally, I just went along and realized the person that was in her skin was just a shadow of the one I married 39 yrs. ago. Als is such a damnable disease. It takes and takes and takes and-----.
 

cubcake

Distinguished member
Joined
Jul 18, 2011
Messages
270
Reason
Lost a loved one
Diagnosis
10/2011
Country
US
State
Ca
City
San Ramon
I haven't heard my pALS in over a year, also. There is only one known recording of his voice and his sister has it, but has made no move to share it with me. I would give so much to hear him again. He also has FTD, so our communication is almost nonexistant. Our progression is moderate, I think. He can barely stand with tons of help, but it's still enough to get him into the bathroom. Last week we got a hospital bed which he uses only during the day, so we are still in our own bed at night, which is very important to us both. He is very ritual based, so as long as I follow protocol exactly, he is very sweet and happy. Yep, totally pureed food, except for popcorn and toast, of all things. I think we are now losing our ability to drink from a straw. I don't know what happens next. :(
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
My husband seems to be going the way of Barbies. I understand that fear Barbie.
 

halfin

Senior member
Joined
Jun 29, 2009
Messages
540
Reason
PALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
I am technically bulbar, but the other parts of my body came along within a few weeks. I had pretty fast progression the first two years. Got the PEG after a year and a half, and stopped speaking about six months later. No dementia, thankfully, although I don't feel quite as sharp these days. But Fran has even more mental deterioration than me, so maybe it's just stress and normal aging.

The good news is that my progression has slowed over the past year. Now, this is partly because I don't have much more to lose; I'm essentially paralyzed in my limbs and mouth. But I still have sufficient neck strength to control my wheelchair using head switches. And more importantly, I'm still breathing on my own during the day. I got a tracheostomy almost two years ago in the expectation that I would soon be on a ventilator, but I'm still using it only at night.

So at least in my case, symptom progression has slowed down. Your mileage may vary. But if you are looking for reasons to be hopeful, I am one example.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Good seeing you post Hal! Glad that progression has slowed down for you. Sounds like Fran needs the big hug I'm sending her.

Laurel
 

Compass Rose

Distinguished member
Joined
Jun 20, 2012
Messages
133
Reason
Loved one DX
Country
US
State
WA
City
Seattle
Cubcake and Barbie, were your PALS bulbar? I'm wondering if non-bulbar PALS always lose their voices? My brother is not bulbar, but I'm still thinking I should bring along a digital recorder when we all go on a family vacation in March and record his voice. Can't help to be proactive, right?
 

cubcake

Distinguished member
Joined
Jul 18, 2011
Messages
270
Reason
Lost a loved one
Diagnosis
10/2011
Country
US
State
Ca
City
San Ramon
CRose.......I would highly recommend it!
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
There is NOTHING worse than standing by helplessly watching a spouse or loved one going down hill from this damnable ALS and being helpless to help them. If you were a Nazi you might steel yourself to their need and go on with life. Most people are not hard hearted and feel broken hearten and sad at what they see. That is why I think ALS is almost as cruel on the care giver as the patient. I so empathize with all going through this painful trial. There was a time when I thought I could endure no more. I really cared less if I lived or died. God brought me through it and helped me. Friends did their part to pray for me and uphold me. My sweetheart finally was free from this horror back in Aug.
God bless you and may He sustain you in your time of trial.
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
you know...as hard as this is...I still feel blessed to have found this site. I try to stay upbeat and positive, but sometimes it just gets to me. After hearing your stories, somehow I feel better knowing that I am not alone in this fight...
 
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