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papaw50

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Joined
Jun 19, 2006
Messages
38
Reason
PALS
Country
US
State
West Virginia
City
Ravenswood
Hello,
Seeing how we're new at this ALS and not quite understanding fully what to expect, can anyone tell me if hoarseness is part of this awful disease?
My husband was just diagnosis this week so we've not received any literature, etc. yes. We did register with the ALS foundation and the MD foundation - both have mailed us a package.
Up until this week, my husband's symptoms were the weakness in both of his arms & hands, atrophy and the continuous muscle twitching.
But, the last few evenings - he is hoarse and has to clear his throat a lot. Maybe I'm reading more in to it - maybe it's just allergies.
How does one know when a symptom is from the ALS? or just a common cold? I think I'm being a little overprotective?
He has a bike trip scheduled for September - they ride for 3 days, about 10 hours each day. I think it's way too much for him to do but he insists he's not an invalid.
To those caregivers - how do you stop yourself from being too overprotective? I watch every move he makes! When he's attempting to button his shirt, I just want to go over and do it for him...things like that.
any advice?

Well, my friends - another day that the Lord has given us! Taking one day at a time.

Thanks!

Patty
 

kathmc

Active member
Joined
Jun 9, 2006
Messages
51
Reason
PALS
Diagnosis
02/2006
Country
US
State
ky
City
lexington
reg: hoarseness

Hi,

I'm new too, was doing same( mild hoarseness, voice giving out ) as your husband, til Tom, my husband, caught a bug at work. His simple cold hit me like a jackhammer, with hard cough battering from inside out for 3 days. Finally got cough med that helped a little. 4 wks. after getting bug, feel like it is gone but cough stayed, voice is weaker, any talking = cough, that too often gets breath stopping, eye tearingly old. I wonder what others here say about flu shots. Never took them, but would if could help.

I was used to being very active in a small university town where you knew almost everyone. If you got sick on weekend, after hr.s, could call your Dr. at home. Right b4 this got worse we moved to a house w/ many stairs in a large town. Couln't do stairs soon after moving in so only left 4 med. apt. depressing not to explore new town, meet neighbors, etc. along w/ all other physical restrictions. Here I don't know anyone and all med. relationships new. Not met a doc you can call at home yet.

What i'm being long winded saying is: If your husband is used to being active, continuing with what he enjoys would be great 4 him. Prob. b best. When I was 25 most interesting person I met was a man I interveiwed 4 Santa Claus job. He was so overqualified, some sort of structural engineer. He explained that 5 yr. ago his Dr. diagnoised bad heart problem & gave him 6mo to year to live. He put stuff in order, got his families blessings and took off travelling all over u.s., doing temp. work. He had been on gulf of mexico oil rigs, Alaska, all over & never felt better. sent money home as he travelled light.

Hopefully your husband can sense new weakness. I learned many new physical limitations, unfortunately, by falling while doing what was easy the day b4. Many, at first, were unexplainable, like from standstill, turning w/ step to get something in kitchen. Bang--seemed like I spent 1/2 my life in kitchen, a cook from scratch, grow & dry herbs type so figured did something odd & kept doing as b4, w/ care. always worked, just not 4 long. I had no diagnosis then, not til 5 yr. later...thats a good thing about big town w/ large medical complexs.

If had time would edit stuff out, am Alabama raised, =overwordy

best to you,
kathy
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
Hello,

Sorry you have a need to be here,, but if you need support you came to the right place. To bad you couldnt' have brought your small town with you when you moved. I used to beable to call my doctor at home also. But he moved to another state leaving us to find a new doctor. And as you have found out,, most of them don't want to be bothered at home. As for the voice thing,, yes it is a symptom of ALS. I too have it, sometimes it's very bad,, other times not so bad. I have no control over it.

Hope you take it easy and stay positive,, come back and talk to us anytime.

Love and Prayers
Marlo
 

dana

Distinguished member
Joined
Mar 17, 2005
Messages
216
Kathy

Hey Kathy,
My dad got a cold in November, and it through him back so far. Dad's bulbar symptoms seemed much worse after he was over the cold. The nurses that work with my dad now say that his body will have a much more difficult time recovering from little things like colds. A small cold could turn into pnemonia for him. So, whenever anyone in our family is sick, we stay clear from dad. Lots of hand sanitizer and soap is also key.
Dana
 

kathmc

Active member
Joined
Jun 9, 2006
Messages
51
Reason
PALS
Diagnosis
02/2006
Country
US
State
ky
City
lexington
Thanks Dana,

My ALS Drs. nurse says since i have pls, should b no effect on breathing. I'll tell my husband about hand sanitizer, he is my only caregiver right now.

kathy
 

danat

New member
Joined
Jul 8, 2006
Messages
5
Reason
Learn about ALS
Country
US
State
Minnesota
City
Two Harbors
Hi patty,


I'm new here, too. And yes, I watch over every move my husband makes. I even listen to him breathing at night, and count his respirations as he sleeps. It feels miserable to note every single sign, and worry about it constantly. Today, I called his neurologist because for the last three days, he's been having trouble with left arm weakness. He ignores all of his symptoms, and keeps going on, so I try to hide my fears (I'm not very good at it).

One minute at a time,
Erika
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Erika. Funny thing about us men, we don't like to admit defeat. Sometimes if we pretend to ignore bad things we think it will go away or won't be as bad. That is the nature of men. You sound very supportive for your husband. He'll get to the point someday where he can't ignore it and if you are there for him it will be easier for him. It won't be easy for you but wives with love for their family can do amazing things. Take care. AL.
 

danat

New member
Joined
Jul 8, 2006
Messages
5
Reason
Learn about ALS
Country
US
State
Minnesota
City
Two Harbors
Thanks Al,

My husband sounds exactly like that!
Erika
 

givenin

Distinguished member
Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
Givenin

Hi Patty
My Husband also has hoarseness and we have been told that there is more phlem in the thoart so he clears it offten. When he came down with a cold I put a cool mist humidifier in the room which helped ease his breathing at night, laying flat on his back caused it to pool in the back of his throat so I have raised the bed with some books at the top which has helped. I also lay awake at night and listen to him gasp for breath once in awhile when it becomes to shallow.
We were also told ...my husband was told not to over stress himself that it seemed to agggravate his symtoms, to carry on but stop when he was tired. From what I have seen this is true with him as he seems to get weaker.
As of right now my husband is on a trip for his company, as he puts it he dosn't want to roll over just yet.
There is alot of info out there for this but there is also a lot of crap as well. We live in British Columbia and are seeing Doctors at the Calgary ALS clinic, they have been fantastic, very supportive. We have done the flue shots for the first time this year and so far so good, having kids in school lots of things come home.

Hope this helps a little.
Givein
 

Barbie4

Distinguished member
Joined
Mar 26, 2006
Messages
139
Country
CA
State
Ontario
City
Everett
Patty

Hi Patty:

I just wanted to let you know that I am guilty for the same thing you are,......being overprotective. My best friend Gail has been fighting ALS for 10 months now and more than once she has said that I worry too much. Sometimes I think she feels like people are treating her as a child me included, and it really bothers her. I can see her point, we push back her hair for her and ask her a million times, if she is okay.

It is a part of the disease, slowly losing control and people doing things for you that you normally would do for yourself. I can only imagine how it must feel. She just said to me the other day, that I worry too much. I said back to her, "do you blame me? wouldn't you if it was me?" She conceded that she would too. I may worry too much, but she sure knows how much I care about her.

Barbie :neutral:
 
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