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Mark's Girl

Member
Joined
Jul 8, 2011
Messages
16
Reason
Lost a loved one
Diagnosis
03/2011
Country
US
State
CA
City
Orange County
Hello Everyone,

I have been reading and learning for several months now....I feel like I know so many of you already....My husband Mark was diagnosed with ALS 3.22.11. His symptons started in June 2009 with little things like having trouble with buttons on his shirts....it is funny how we just start to work around the little problems without really thinking there is anything wrong...just make daily adjustments as needed.
In November 2009 he started saying that his core felt weaker than normal and was having some problems lifting and doing things overhead.
In January 2010 he fell while working....he said it was like his legs came unhinged while he was walking....we immediately got him into the GP...many blood tests, xrays etc...referral to Neuro....more tests, EMG, (A few more falls)
In March 2010 he had a muscle biopsy...which after being reviewed by the Pathologist and Neuro....turns out findings were inconclusive. But was told they thought it was Polymyositis.
In April...began seeing the Rheumatologist....Physical Therapy...more testing with Neuro...
In August 2010 transfered to UCI ALS Clinic for treatment, AFO's in December 2010, began IVIG Infusions...continued through March 2011. Later that month we received the diagnosis.

Life has been a whirlwind since then....the shock, sadness, anger and frustration was nearly overwhelming in the beginning....

We work hard to keep our since of humor...(we refer to the disese as "Lou") even during the most heartbreaking events...and we are now working hard to stay ahead of this disease by obtaining the equipment he needs now and things he will soon need to make him as safe and comfortable as possible.

Currently, Mark has trouble swallowing liquids...some problems with food if he does not take his time and focus on the task at hand....Voice is very week...words are a bit slurred...worse as he gets tired. Thumbs don't work at all now...legs very weak...uses walker everywhere...W/C being delivered this week. Neck very weak...uses soft brace for support when it hurts him....he uses Bipap at night when he sleeps. I have noticed changes in his eating habits....does not have the same appetite as before...he is losing weight....refuses PEG and VENT....and will only take small amounts of Ensure etc because of the phlem issues he experiences.

Next Neuro Appt is in Oct.

Sorry for the long post....I have been learning from all of you for several months now and thought I should make it official.....I can see that I am going to need lots of help in the future as this looks like it is going to be an awful bumpy ride!

God bless you all!

D
 

heymom05

Active member
Joined
Oct 20, 2010
Messages
92
Reason
CALS
Diagnosis
09/2010
Country
US
State
LA
City
Lafayette
Ok, D. Welcome to the club no one wants to join.

Few immediate things,
1. get in touch with your local ALS Association. Some of the things you are getting,you can find in theirn loaner closet.
2. NEVER lose your sense of humor.
3. We are all here with you.
4. Scream, cry vent when you need to...and you will!

Know we are with you on this crazy ride.
Gina
 

ccurths

Active member
Joined
Jan 1, 2010
Messages
76
Reason
PALS
Diagnosis
06/2010
Country
US
State
Oregon
City
clackamas
Very good advise!
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
So sorry for the diagnosis. It seems they took a while as I'd have thought the EMG would have been abnormal and given them a clue pretty early.

Glad he's in a clinic where they can offer the best support and it's good to be getting things and learning to use them before they are needed. Did they also explain to him that a PEG doesn't mean that he can't still eat food normally?

Many choose not to vent--but the PEG might be something he might want to reconsider as he's using the bi-pap.

The folks here will be able to answer many of your questions--and his. Welcome to the site, but very sorry you needed to find it at all.
 

Mark's Girl

Member
Joined
Jul 8, 2011
Messages
16
Reason
Lost a loved one
Diagnosis
03/2011
Country
US
State
CA
City
Orange County
Yes...EMG testing results were an issue to begin with because the first Neuro....couldn't quite figure out what to do....2nd Neuro sent us to UCI....their EMG tests were much more detailed and that is where we were getting actual meaningful information. I should also mention that his Grandfather passed from ALS in the mid 60's....we were told by one of the Neuro's on their team that it was not possible for Mark to have ALS if his Mother did not have it....2 weeks later we given the final diagnosis.

We have gone around and around about the PEG....his stance on it has not changed at all....however, I will not give up on pushing it...as his weight loss is of huge concern. (started at 210lbs now approx 188lbs)

Thank you all for your kind support.

D
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Quick add to advice list... get some Thickit...it's available at walgreen's, or online at amazon and other places. Add it to any liquid ... heck, Glen used to put it in his beer and said it wasn't bad and better than choking. It's tasteless and adjusts the consistency of the water, juice, etc to a thicker,more manageable one.
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
So sorry you are on this journey.We will all do it together.
But very happy you found us all here. Their is so much Love and support, also a wealth of information from all the wonderful folks here.
Just know we are all here for you, hoping and praying for each other in sincerity.

((HUGS))
 

dian_na

Distinguished member
Joined
Mar 8, 2009
Messages
121
Reason
CALS
Diagnosis
10/2007
Country
US
State
mo
City
saint charles
If you contact your local alsa, so they come out and stuff like that for loan equipment, but ask them for some ThickIt, its a thickner for fluids. So he may beable tp swollow, my mom for the year prior to her vent wanted cheri koolaide with thickner in it, when she couldn't sip it anylonger she wanted it in a spray bottle with thickner,

some say lemon helps clear the junk, might do a search here on this forum or PLM
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
985
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
Well D, I sure hope he will reconsider a feeding tube, we sre hopefully getting my husbands in the next week or two. Bruce was choking tonight on cream of chicken soup, he says it burned his throat. You know that is kinda thick already. So I am really waiting for that tube as it is getting harder and harder to find stuff for hom to eat. We are here for you so I agree with everyone else, you will make friends, get great advice, and probably learn more here than at the doctor. A lot of the weight too is losing muscle I would think. My husband was around 210, and now he is 170. Big Hugs to you and hang in there!
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Joni...in the meantime, thickit in the soup...get it to kind of a pudding consistency. It will help a lot.
 

jwife

Distinguished member
Joined
Jul 10, 2010
Messages
160
Diagnosis
05/2009
Country
US
State
Alabama
City
Lincoln
The peg tube was one thing that my husband and I agreed would be worth trying and we were right. I don't think that it prolonged his life, but it certainly made life much easier for him and he did not have many choking spells (that and not being able to breathe were the two things that he didn't think he could handle). Just because it is in place doesn't mean that you have to use it. For almost 3 months, we used it only for meds and flushing to keep it open. Then he slowly decided to try it and after a bout of bronchitis that might have been caused by aspiration, he went full time to the tube and never looked back. He said that it was funny, but he didn't miss eating as much as he thought he would have. He even gained a little weight after he started the tube feedings. Looking at the peg from a viewpoint of making life easier for your husband changes the perspective. GOOD LUCK!
 

TomsSIL

Member
Joined
Jul 26, 2011
Messages
28
Reason
Loved one DX
Diagnosis
04/2011
Country
US
State
PA
City
Shinglehouse
We went through something very similar with my BIL. His left foot was going numb and getting ice cold, so he thought it was a circulation issue and went to a chiropractor. That started a fairly short journey to his diagnosis in April. He has gone downhill fast. Since May, he has gone from one cane to two to a seated wheeled walker. He is getting bi-pap on Wednesday.

I hope you can get a feeding tube going. Tom eats two regular meals a day, but gets an additional 1000 calories with Jevity. He hates it, but he has lost so much weight that he knows he needs it.

A sense of humor is vital, but there are some days when there is just nothing funny in anything. This is such a miserable thing to go through.
 

Sequoia

Senior member
Joined
Sep 19, 2010
Messages
846
Reason
PALS
Diagnosis
08/2010
Country
US
State
Washington
City
Seattle
Welcome to the Forum. Wish it was something else, but you are among friends here for support, prayers, information, advise. I hope your husband reconsiders the peg, as it will make his life more comfortable. Its no biggy if you read what pals post about it. I am scheduled to get one soon, and it will help me be less fearful of aspirating...which is like a mini-dying session of not being able to gets ones breath....not a pleasant thing. You are here now among friends, and we welcome you with warm ((hugs))
 

Mark's Girl

Member
Joined
Jul 8, 2011
Messages
16
Reason
Lost a loved one
Diagnosis
03/2011
Country
US
State
CA
City
Orange County
Thank you everyone for the suggestions and the warm welcome...it is not a club I wanted to join...but....feels like I am among friends so thank you all!

D
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
D,

Sorry about your husband, Mark! His weight is going to be crucial to his longevity. Feed him the highest fat/calorie content liquid supplements you can. Help him rinse his mouth afterwards. (We've found Smart Rinse kids mouthwash to be the absolute best in clearing stuff from the mouth.) This will help with that build up of gunk. If you can get a VitaMix blender, do it! You can blend up anything with some broth or any kind of liquid. This has added calories to my husband's diet of Jevity. Sadly, he's at 147, down from 200, but it took him losing weight to realize he needs to make an effort to eat the calories he's supposed to.
 
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