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Handmaiden

Member
Joined
Dec 9, 2010
Messages
19
Reason
Loved one DX
Diagnosis
01/2011
Country
Uni
State
TX
City
Dallas Fort Worth
Hi friends,

I know it has been awhile since posting. So much has happened since my brother first received his diagnosis. We went for a second opinion - same diagnosis was given. The second doctor actually told my brother.....What you are dealing with is very serious - if there is anything you want to do, anywhere you want to go - you should do those things now. We have also gone to have a pulmonary function test done - respiration was normal - but doctor ordered a sleep study in order to get him on a CPAP. Then, my brother wanted to attend the ALS Support Group meeting, which is held the first Thursday of each month.

The lady who facilitates it I found to be rather annoying. To say this was a "support group" and have the facilitator as well as others - say to my brother - your going to need a wheelchair, things just get worse from here on out - etc, etc. was shocking to me. This was his first visit for crying out loud! It felt like all the "so called support facilitators" were more like angels of death come to tell him how bad his life was going to get! Geeez - seriously! Baby steps please.

The facilitator also said she wanted to do a home visit - to walk my brother through everything. He agreed he did not want her in his home at all. She kept referring to the members as "her patients" yet she is not a doctor - yet likes to view herself as one.

Right now - I am so disappointed with the ALS Support Group forum that we are not sure what to do - he needs support but NOT what we experienced.

Is there anywhere else to turn? I have also noticed he is coughing a lot more and has cramping in his neck and hands, facsiculations, and drooling. He is also experiencing depression - but is putting on a brave face for all of us.

Need some real support, or real hope.
 

brooksea

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Messages
5,171
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Other
Country
HM
No doubt it was quite a shock seeing pALS gathered together in one meeting in varying degrees of disease progression. We had a similar experience at the one and only support meeting we attended that left us wondering why they called it a "support" group. I have since learned that our local ALS chapter now has support meetings for newly d x d, which I think is a great idea.

Your brother may or may not end up needing all the the group leader referred to, as far as equipment. But, despite her personality, it may be a good idea for her to do an in-home evaluation. She could possibly point out some useful ideas that y'all may have not thought of yet. And, in doing so, she may know of equipment in the ALSA loaner closet that will save your brother hassles and money. He may need nothing at the moment, but if he is coughing, the loaner closet may have a cough assist he could use. If he is weak and becomes easily exhausted, they may have a loaner PWC. It can't hurt to maintain a relationship with the ALSA local chapter, as you never know what's around the corner with ALS.

The cramping, drooling and depression can be helped with medication.
 
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tomby

Distinguished member
Joined
Feb 2, 2010
Messages
371
Reason
PALS
Diagnosis
09/2009
Country
US
State
NY
City
Syracuse
The tone of these meetings depends a lot on the facilitator. We stop by two- one has a woman who seems to think it is her job to have all the pals share their negative experiences, the other books guest speakers of mutual interest to us all, or encourages discussion of topics that benefit us or are solutions to problems. Guess which one I look forward to? But, I still go to both, because I go for the other pals, to find out what works for people, to encourage and be encouraged. I just tune out the facilitator.
 

pjm220

Active member
Joined
Apr 10, 2010
Messages
47
Reason
PALS
Diagnosis
08/2010
Country
US
State
IL
City
Chicago
We didn't attend any support group meetings, primarily because my husband's work schedule didn't allow for it. But the facilitator is also our home nurse, and she comes to visit every month. Her walk thru' in our house was very helpful, and she has been able to keep us thinking one step ahead of the ALS.

When my doc told me I had ALS, she said to get my affairs in order. These kind of statements can be shocking. I think they are made in sincerity, however. Once you become a close acquaintance of the disease, you learn that the only way to stay in control is to prepare for the next stage ahead of time.

I pray for the passing of this initial stage of shock for you and your brother. It's a disease that requires lots of support and lots of exposure to potential life changes that may be coming. God bless you both.
 

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
Unfortunately, ALS doesn't always allow for baby steps. It's more like a giant game of whack-a-mole... you just think you have things in order and something new will pop up. Our ALSA chapter social worker came by for a home visit and brought a huge stack of booklets and other information. Yup.. it was overwhelming. But as the disease progressed very rapidly, I was ulitmately glad I had it all. Believe me I understand the desire to only have as much thrown at you as you can handle at any given time... sadly, we don't always have that luxury.
 

LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
419
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
Wow, so sorry that this was your first experience. Makes me remember when my Mom first came home with her feeding tube and the home care nurse that came to her home said right to her. "This is a horrible disease, my brother died from it and it will only get worse for you." We changed nurses. I plan on starting my own support group soon and will be so very careful with my words. It is important for you to know the things that you will need to make life easier and more comfortable. I was so protective of Mom in the beginning. I wouldn't let anyone say anything negative around her. Now she realizes what is happening to her but we still talk in positive terms. Words are so important! You can certainly use this forum as your source for support. It is full of wonderful caring people who have a wealth of information. I could not do this without them. God Bless you!
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
I'm going to my first ALS support group tonight... pretty nervous about what I'll see and hear from the folks there. The PT I met with for the first time yesterday said that she's had a lot of ALS patients and that I look better than any of them did. So what does that mean? Not a thing unless this for some miracle will stop in its tracks, which I pretty much doubt.

I do try to stay positive, but know I do need to get my affairs (wish I had some :) in order.

HelenL
 

Ladyinn

Distinguished member
Joined
Apr 7, 2010
Messages
398
Reason
PALS
Diagnosis
11/2009
Country
US
State
South Dakota
City
Custer
Helen, hope the meeting is positive and you leave with a good feeling and are not disappointed. We have no support group here and I envy those who get to meet other PALS face-to-face.

Let me know how it goes.

{HUGS}
 

KC2U2

Distinguished member
Joined
Sep 20, 2010
Messages
229
Reason
PALS
Diagnosis
09/2010
Country
US
State
LA
City
Broussard
I go every month to our support group meeting and have found them very helpful. Yes, they can be scary when you encounter fast progression or late stage patients but we get so much help and good info there and really like our ALSA rep who facilitates it. Hope you find your place in the group or find another support, this is way to hard to do alone.
 

HelenL

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Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
Thank you both, I admit I'm nervous about it, but also feel that it will help me... and since its only once a month, I better get myself over to it, or kick myself for not going for a month!

I bought a MDA shamrock yesterday, first time knowing what I know...
 

robc

Active member
Joined
Jan 23, 2007
Messages
46
Reason
DX UMND/PLS
Country
US
State
Oregon
City
Silverton
Everyone has different ways of communicating, coping, etc. I would try communicating your concerns, needs and where you are at mentally to the support group leader.. Maybe you're not ready for that type of support group just yet. I am one that likes to have all of the information and stay a step ahead. I have had doctors that have tried to shield me from information and that just doesn't sit well with me.. I'd rather have it straight no matter how ugly it is.. Put yourself in the position of the support group leader.. Must be hard to try to walk that balance of giving people information they need vs information they are ready for.. They are there to help you.. ALS sucks and there are very unpleasant things around the corner .. it's hard to go it alone.. Better to brace yourself, get as much info as you can handle and map puta plan to stay one step ahead of things so that he can enjoy life and be as active as he can or wants to be.

Best of luck to you on your journey..its great you are reaching out to others here.. Wish my wife would do that!
 

kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
I hate to be a bearer of bad news but the reality of ALS is that it SUCKS! There is no easy way to approach it, simply because there is no future hope. If you have an extremely slow progressing case, be thankful and live your life to the fullest while you can. If you aren't so lucky, still live your life to the fullest as you can. Everyone comes to understanding and acceptance in their own time and way. While it seems that some are crass and mean, the sad truth is that this is a true monster in every sense of the word. My mother lived 17 months after her diagnosis. She didn't come to true acceptance until she had progressed to the point she wasn't able to travel anymore. I beg everyone to take advantage of all the help, gadgets, medications, and support available....sorry you are embarking on this journey but there will come a time when you will have as stark a view of ALS as we "mean" people have.
 

HalsWifeFran

Active member
Joined
Apr 30, 2010
Messages
69
Reason
CALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
I have a slightly different perspective here.

My husband, Hal, was diagnosed with ALS on AUgust 5, 2009, at age 53, seven days after our 30th anniversary. He was diagnosed very early in his progresion - still "normal" to the outside world. In fact, we had attempted a 30 mile bike ride to commemorate our 30 years together.

We went to our first ALS support group meeting, sponsored by MDA and brand new to our area, in early September. (We live in Santa Barbara CA, about two hours from Los Angeles, where MDA and ALSA have their closest branch offices) Hal was still able to work, run, talk - minimal symptoms except for slurring of speech, fasiculations, fatigue, some clumsiness. He was the newest diagnosed and hence the least affected. Our group seemed to focus on being prepared for the inevitable. The second meeting had a speaker from DynaVox,and the third had a speaker from Visiting Nurses.

Well, in early December, day of the 4th meeting, I got a phone call form MDA - the facilitator was not able to come, nor was anyone else from MDA - could I, a Physical Therapist, lead the group that day? I did. No speaker, just me talking about Physical Therapy for ALS. Two weeks later, MDA contacted me and asked if I would be willing to take over as the group facilitator. If I could, the group could continue. If not, it would cease to exist. So I agreed. And as of January, 2010, I was the group facilitator.

By then, Hal was walking only about half a rooms length, using a walker. Eating was becoming challenging, and we were modifying his diet. His right hand was too weak and uncoordinated to write with, except for his signature - but he could still type. We got busy modifying our home. And I learned all I could about ALS - its progressions, etc. We also were looking hard for something to slow Hal's progressions, and trying to get hims into a clinical trial.

I don't want to turn this into an autobiography - but Hal has continued to progress at at rapid rate, despite our feverish attempts to find something to slow his progression down. We try to stay ahead of it in terms of preparation - but it's challenging! Knowledge is powerful, and also mandatory to maintain quality of life! In addition, having PALS and their supporters that we can interact with in person has enriched our lives. Also, we share gear when we've "outgrown" it.

Anyway, as an ALS group facilitator, I have tried very very hard to balance the following:

1. Keep the meeting informative and tailored specifically to the PALS and supporters who are at that meeting
2. Try to keep the meeting upbeat and empowering
3. Avoid making any judgements - each PALS deserves the right to his/her own choices

This can be very challenging! ALS is such a diverse disease, and the progression is so unpredictable. Currently, Hal is the farthest progressed in our group.

Our speakers in 2010, 2011 included an Occupational Therapist who works with ALS patients, a wheelchair specialist who uses one herself, a person from a local caregivers resource center, a person who videos people (at no charge) to create memories for their families, a person who designs automated homes, a person from a local independent resource center that promotes universal accessibility for disable people.. I take notes, and after each meeting, I email out a re-cap that summarized the information shared at the meeting, and includes a list of resources. I have found that supportive friendships between PALS and families have evolved thorough these meetings. We have also shared many hardships, and far too many funerals - but that's part of the whole thing.

It's been quite a journey. . .
 
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AKjo

Distinguished member
Joined
Nov 3, 2010
Messages
379
Reason
Lost a loved one
Country
US
State
Alaska
City
Anchorage
Wow. Fran, you have my utmost respect for kicking in and doing what needs to be done. A rare combination to find someone who has both the talent and the willingness to take the bull by the horns. Wish we lived nearby to attend your meetings!
 

HalsWifeFran

Active member
Joined
Apr 30, 2010
Messages
69
Reason
CALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
Thanks, AKjo. It has not been easy. To say the least.

I thought of something else to add:

Hal and I would never choose to give up either our online community here or our local support group in Santa Barbara.

The enormous repository of experience, help, and sharing of support we get from fellow PALS and CALS here at ALS forums is priceless. But so is the eye contact, the hugs, the phone contact we get from local PALS and CALS.

It's a tough journey, and everything helps a bit. . .
 
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