What is your experience with your ALSA chapter?

[andyvaughn]

I am just curious to see what everyone's experience is in getting support from their ALSA chapter. I know for us, while we had a kind and compassionate case worker, there was very limited benefit from the chapter to us on a personal level. I was wondering if everyone might want to tell of their experiences, and what they would see as beneficial as a Pals/Cals. My thoughts were that I would take suggestions to our local chapter - trying to improve the lives of Pals that might benefit from much needed services.

Here are some of the things I wish we would have had.

1. A full home review upon - or shortly after diagnosis, with suggestions as to critical modifications, comfort modifications, and a list of local, reputable contractors with experience in handicapped renovations and a list of preferred vendors, prepared by ALS patients, of good quality items at best cost, such as bidets, grab bars, etc.

2. A quarterly lottery system for a bathroom redo. Perhaps they could even get a local hardware/home improvement store to donate a set amount quarterly, and a contractor to donate services quarterly in exchange for publicity.

3. Regular visits from a PT/OT/ST to eval home needs as disease progresses.

4. A comprehensive list of loaner equipment available.

5. A resource/list of items for sale - such as vans, lift recliners, etc. that Pals are no longer using.

6. A volunteer pool, perhaps of local college and high school students - to help with errands, yard work, whatever.

Of course, the list could get MUCH larger, but what would you guys deem the most important thing that the ALSA can do, or did/does do for you that would directly improve your quality of life?

Andrea - wife of former Pals (now Angel) Jim

 

[brooksea]

Hi Andrea!

I wish to thank you for your continuing efforts in our fight against ALS! I hope you are doing well, my friend.

Our experience with our local chapter has been luke warm. We too, have a very nice rep. The problem is she covers the whole state of GA. We had two reps for a while and the new one was let go(economic reasons were cited). We don't attend the support group meetings, as my husband refuses to do so, after our first experience. (That's a whole nother istory, as they say!) I don't know if that plays into things as far as support.

We were happy to note that the ALSA would build a ramp leading to the house, but now they will no longer do that and instead have sent out a letter letting us know they have preferred contractors.

What I'd like to see are these additions to your list:

1. FREE information on how to help a young child cope with their parent's ALS. This help could be in the form of counseling by a qualified volunteer professional and age appropriate literature. (Our experience with this has been horrible as far as trying to get any help. We were sent some child's book about Lou Gehrig that had nothing whatsoever to do with ALS. I called and asked if they had anything else to offer or suggest --- yes, we could buy a workbook that cost $25.00 from some psychologist. Why $25.00? They don't have the funding to pay for the books. They have the funding to pay for an irrelevant book, but not a workbook that could possibly help a child whose parent is terminally ill. I sent the psychologist an email regarding the book and really got no info about how it would help, so I did not purchase it. And frankly at that time we didn't have any money to spare. Now we have handled things on our own, but it would be wonderful for pALS that are newly diagnosed to have a resource like this if they have young children or grandchildren.)

2. A simple phone call to check on the pALS to see how they are doing! and to check on the caregiver to see if they need a break or just someone to talk to. I would think this crucial in helping families with ALS cope. The isolation can be so depressing, unless of course you have a good support system in place. But how will anyone know unless a phone call is made? If they do need help, then the rep could come asses the situation.

 

[shelly2612]

Wow, I thought everyone would have the same experience with ALSA that I did. I have had nothing but a positive experience with ALSA in Southeastern Ohio. We live so far out that attending the support meetings means a 6 hour round trip and its just not possible. Our rep, Yvonne Dressman or rather "PINKY" is awesome. Anything we need she goes over and above to make sure we get it. So far they have helped us with the following:

1. plate guards

2. built up silverware

3. doorbell, button hooks, key turners

4. a second bi-pap for the vehicle

I want to try an adjustible bed, because I am not willing to give up the comfort of sleeping with my wonderful wife. They are trying to make that happen for me. Our chapter is "Wonderful" they answer so many questions for my wife and I. Pinky tries to make us aware of items we will need before we need them. I promise if you call her you will get a call right back. I wish everyone's rep was as caring and upbeat as she is. The only thing I would ask for is a listing of equipment available.

I pray that more people will donate items that are no longer used to the ALSA or another PALS so that they can be reused. Its not really the big things, it is the small things, like the built up silverware, the plates, plate guards, these things don't cost alot of money but when your struggling to make it because of finances it seems like a lot of money.

 

[SMillheiser]

My experience- ALS Guardian Angels

I couldn't resist responding to this thread... although I probably should.

The various ALSA chapters are our largest single source of of referrals, expenditure, and grants fulfilled. I always return their phone calls and emails immediately. I am glad to help. I have never asked for anything in return.

In March 2009 I needed some advise from the ALSA national organization. The information requested could have resulted in my ability to significantly expand our services to PALS/CALS. I was not requesting money, effort, or time ... just a few minutes on the phone. I tried to contact the appropriate VP. This person was fully aware of my efforts on behalf of the local chapters.

I called quite a few times, leaving messages without a single response. My emails went unacknowledged. I finally gave up. This was my first and only experience with the national organization. This is simply one person's experience. No more, no less. However it left me wondering whether the upper echelons of the ALSA consider their work exclusively as a career and not a cause.

Stu
ALS Guardian Angels

 

[hopingforcure]

I know this is not a novel idea Stu, but how could we get your Organization national attention, national media.. My sister mentioned that a organization like your's should surely merit national news coverage. I think we have enough people on this board alone to have a voice for you...Off topic, but I am so sad about national news about als..

 

[redneck charger]

I think personally we should have a ALS Chapter for North America.. I know two countries do 2 different things, But it's the same disease and people like you and me who get this disease. I think we need to work together where ever we are to make it easier on families.. and make more things expandable for all of us in case of..

Just in a way to make more cash for ALS.. think we should have bottle all over america saying a loonie (canadian) for Lou... Just thinking if everyone doanted a dollar to your ALS chapters in all your neighbourhoods.. We would be able to make more acknowledgement everywhere for ALS. And have packages ready for familie who discover ALS has hit them

 

[rose]

I've never been contacted by an ALSA rep. I do not know if it is because I live in a different state than the clinic which I attend, or why.... I guess I thought it was up to me to contact ALSA if I needed something. (is that how it works?) The only contact is the online monthly newsletter.

I did receive a nice phone call from a MDA rep, who had gotten my name from the MDA social worker I see at the clinic. She let me know what MDA services were available to me if I wanted them.

 

[hopingforcure]

sounds like a good idea. Do you guys know the MLB baseball thing was all because of one man's editorail... A lawyer with ALS.. let us try to start this thing.. Did you guys see when I believe Wes Little stood on the side of the road and held a sign with his buddy and they had a sign about ALS.. What if we all did this at once, a group effort. At one time..

 

[bmb3641]

I've had good luck with the alsa organization i live in montana the closest one is in washington. they call every once in awhile and they had a rep meet me at the als clinic. also sent me a button hook


life is short but sweet for certain

 

[brooksea]

while my husband could still be understood at the beginning of his diagnosed, he was aware that the ALSA reps were in need of a new delivery van for loaner stuff. He spoke with the ALSA rep at the clinic and she advised him to contact the guy that was the "in charge" of fund raising. We tried phone calling, emailing and getting back with the rep NUMEROUS times to no avail! My husband had already lined up a sponsor to fund a new van for a year. We never ever heard from anyone! This devastated my husband, as he wanted to do something right off to help pALS!

I guess they were too busy lining up the gala black tie event...

Now the rep uses her own vehicle stuffed with everything you can imagine! ( don't get me wrong, I appreciate the loan closet, but this was a great opp to get a new van if only the guy had called back to advise my husband how to proceed with fund raising.)

since then we have raised money for the MDA ALS division and now we will focus on ALS Guardian Angels.

 

[kelly]

Stu..if you let us know the VP's name....we could arrange a barrage of phone calls. Things like this make me absolutely crazy. You caught me on an angry at ALS night...so bring it on! We spent the afternoon at a Meet the Experts Q & A. We proceeded to listen to a presentation on dehydration and ALS! I think my jaw was hanging open the whole time..thinking this is common sense. Obviously people with ALS have dehydration. Andrew and I are still in shock that this was the presentation. So, let me know if I can do anything to help! Fondly, Kelly

 

[redneck charger]

sounds like a good idea. Do you guys know the MLB baseball thing was all because of one man's editorail... A lawyer with ALS.. let us try to start this thing.. Did you guys see when I believe Wes Little stood on the side of the road and held a sign with his buddy and they had a sign about ALS.. What if we all did this at once, a group effort. At one time..

Something we should work on!

 

[hopingforcure]

Bring it on, when can we start calling and e-mailing. We need to do something in mass numbers I am really serious about this.

 

[brendapals]

Well, I feel like chiming in right here.

Like rose, my ALS clinic is in a different state. Everyone I have met thru the ALSA in that state is polite, willing to give info, etc..

I guess the one thing that I found amazingly shocking was the fact that when I emailed the "pt advocate" back in Nov 2008, the response I got. I had asked her if the ALSA ever helped pts with copays/deductibles. My insurance had covered most of my clinic visit in 7/08, however, there was about $600 in copay/deductible that wasn't covered. She politely explained that "at this time", the ALSA did not offer any assistance like that.

Now, look back with me, I organized a team for the annual ALS walk. I was diagnosed in 6/08, started working on my team in 7/08, the actual walk was in 9/08. I had never, ever, ever done anything like this event IN MY LIFE. Our team had over 260 walkers present on walk day, and our team tallied in over $18,000 in monies raised.

Not too shabby, huh?

Well, if I was raising all of that money on the promise that it was for research and pts, and only in 11/08 to find out that they had nothing to help a pt with a copay? I had gone from working full time as a nurse to working maybe 2 days a week by that time (nov 08).

I do attend most of the support group mtgs, and the folks there are awesome. Always telling us about what's in the loan closet, etc.

I did call the MDA local office (back in 12/08 I think), and they told me that my neuro also had a clinic with them in the same city if I wanted to see him there, my copay/deductible would be covered by MDA. Of course when I mentioned that to ALSA, they said it would be much better for ME to keep the same team I've had for almost a year now.

My huge dilemma now: will I work that hard again this year to raise the highest amt of money? Will I have a "tainted" view in the back of my mind?

Yeah, I wish they had some way to assess my home needs, all the remodeling needs, send someone to help clean my house, or my yard.

But I'll probably just keep doin' what I'm doin', cause when it's all said and done, I'm doin' pretty damn good!

gosh, that was a lot for me to type!
brenda

 

[joelc]

Folks, please remember what you were told the money was being raised for.

I was told the money was going to research and purchasing equipment to be loaned out to PALS.

If they gave everyone money for different things they would not have money for research and equipment.
I am thankful for the equipment they loaned me and especially my powerchair. I could not have purchased that myself.

Or, would be okay if there was no money to find a cure?