My wish list

[jamorel]

I created this wish list in response to a thread about ALS TDI but I decided I wanted to post it to the general forum and see if there was anything we needed to add. You see, after writing it, I read another thread that talked about the ALSA not wanting to support ALSGA and about the Canadian ALS Society having to change an event logo or pay a "fee" to the ALSA for its use. It seems like this is even more of an issue than I imagined, and I imagined it to be a big issue. So here, I will post it on the general forum: My wish list.


1) I want a database and I think that this should be a jointly funded, concerted effort that crosses borders. How can we hope to find a cure when we don't know who has it, when they got it, what they were exposed to or what sort of family history they might have with neuro diseases.

2) I want access to care. People are hit hard and fast with this disease, and because of the physical toll, most are forced to shell out their entire life savings for equipment they may use for a few months or a few years. I have heard from people on this forum and elsewhere who have lost their significant others or who do not have a family to support them and are alone. I have read about long and ridiculous trips to doctors only to be met by stairs and misunderstanding and the whole thing is wrong.


3) I want to see associations and orgs. work together, at least in these two areas, and dedicate some portion of their efforts and funds toward it because if we do not put some effort into what is happening today, how can we guarantee that anything will come of it for tomorrow?

I don't think we can afford to support a single hero as this is a team effort... and I also don't think we can put all of our efforts in one basket, be that research or personal care. There are many baskets and we are suppose to be working together on this.

 

[caroliney]

Little is known about ALS, which was discovered in 1869. In 70 years there's only one questionable drug that may extend life by three years. In 70 years!
For unknown reasons, veterans have a 60 perent higher chance of developing ALS.
My Wish is to find out what is causing this horrible disease to take so many lives.

God Bless & Hugs to all ALS friends,
Caroliney

 

[irismarie]

YOU have to be right and I soooooooooo agree. - but I made myself miserable the other day reading old posts on this forum and people have been saying the same sort of battling things for years and years. I think the trouble is that those of us who are ill do not have the energy or the fight in us to do what we should/could to help get things off the ground and possibly the same can be said for lots of carers. And then once the PALS is dead and gone I suppose many carers just want to try and forget and pick up the pieces of their life and try to rebuild a new one.
PLEASE do not think I am trying to demoralise you. Only a few months ago I was ready to try to fight any battle and could not understnqd why the rest of the group here did not seem to pick up the war call/. I understand more now.
Your wishes are right on and I share them but HOW?
It really does take MEDIA coverage todo any good; People have often talked about Oprah. I have talked about Michael Moore, but somehow nothing ever comes to anything. Ask IndigoS about this. Her frustration has been enormous, I know. But right now, all my little energy is spent on how I am best going to get through the day, the week, these next months. I see that that is exactly what you are trying to get at.
ALl this should be easier for all of us. I spend far more energy fighting the system than fighting the illness - but htat is in France and our system is different from yours. Can you expand a little on your dreams? Can we be the generation of sufferers that actually achieves something? Another wish!
THank you for starting this thread and pulling things together

 

[indigosd]

Thank you Jodi for this thread and Thank you to those that take the time and effort to reply! Jodi, mine is very similar to yours. Caroliney, Rilutek is the only FDA approved drug that may extend life by THREE MONTHS. The VA...Don't even let me get started on that! Irismarie, your battle to access care is no different in France than our experience in the USA. GHASTLY. I do believe that you have expressed part of the problem with your statement about "do not have the energy or the fight in us". No one truly cares until it becomes PERSONAL. It is the individuals that are personally impacted that should be heard and that only happens when you have a LOUD and PUBLIC presence! We need a well thought out battle strategy. We need to enlist ALS WARRIORS that are not PALS or CALS to help us FIGHT for our lives. [like Jodi, Stu, Kinza, Michele and others] Web has 4 adult sons and not ONE of them have joined any ALS organization or donated any time or money. My siblings are supportive emotionally but do they join the battle-no. That is probably the reality for most of us. Why is that? My sister had breast cancer, she does the Relay for life every year and the entire family donates money for that cause and participates in the walks but nothing, no outcry, no donations for ALS....oh, I take that back. My 84 year old Daddy did contribute to ALSGA. If I could put a name on my frustration I would call it the disease of ALS APATHY that seems to have a hold on the general population and for the rest of us it is simply and purely BATTLE FATIGUE.

1. I want a WORLD ALS REGISTRY that is funded and maintained on a global level.

2. I want the VA to disclose the information that they found that validates "any individual that was a member of the Armed Forces has a 60 % increased incidence of ALS"! I want the VA to make their services for ALS available to ALL individuals that honorably served their country regardless of whether that service was "active" or reserve" status. ALS does not differentiate and they should not either!

3. I want the Government to give REAL tax relief to individuals that are stricken with a terminal disease in the form of significantly reduced PROPERTY TAXES, personal taxes, no penalty at all and no 20 % tax on 401K that they have to withdraw to pay their debts if they are middle income and below.

4. I want it mandated and monitored by the Government that ANY NONPROFIT organization or association will have at least 50% of their board members be personally affected by the disease of the situation that said organization or association are created to assist. [NO ONE but the individuals affected can really know what is needed or what works!]

5. I want the said organizations and associations to put their money where their mouth is and WORK TOGETHER cooperatively to find a cause, a treatment and a cure! I want them to really do things that HELP US vs things that only feather their nests.

6. I want accountable, affordable and accessible Health Care for our PALS!

7. I want accountable, affordable medical equipment!

8. I want it to be economically feasible for CALS to do home care for our PALS! We should be PAID by Medicare for the money that we save the Govenment.

9. I want a pertinent and honest handbook that contains valuable and factual information about WHAT TO DO and WHERE TO GO when you are first diagnosed! It is soul overwhelming and we all have to try and navigate this overwhelming journey without any framework of where to begin-I am thinking about SSDI, Medicare, equipment, VA etc. Why does everyone that is newly diagnosed have to reinvent the wheel?

10. I want a ACTIVE and POWERFUL Watchdog Advocacy group that will put their teeth into supporting and protecting our PALS and CALS WORLDWIDE! I personally have phoned ALSA and MDA and asked for assistance and it was just marshmallow fluff for me.

11. I want to link up the Stu's, the Jodi's, the Michele's in the world because they do care and they do make the effort to make our lives improved.

12. I want a Vacation with my forum family :] I want to see them face to face! I want Oprah or Ellen or Rosie or someone to put on a ALS CRUISE! This is a wish list right?!

13. The list could go on forever but I want to second irismarie's wish, "I soul want us to be generation of sufferers that actually achieves a known cause, a treatment and a cure"

Kay Marie and the Monkey's

 

[irismarie]

ditto, I sent the link to guardian angels to all my friends and family. Not one responded. But this must not turn into another thread about family!

 

[jamorel]

Thank you... I will ask. You never know who is listening, and if you ask long enough and loud enough then the question becomes, "who isn't listening?" People with ALS and those who care for them do not have the options or support. I know many try and I appreciate the efforts, but I have watched, read and witnessed the process and it is lacking. I have cared for people with terminal cancer and I can tell you that the support and information difference between cancer and ALS is startling. I think the list is valid and important... are we really asking too much? Well, maybe the cruise is pushing it, but I like the concept

 

[jamorel]

Kay Marie, I will add that I have found similar reaction to ALS as you. I have lost someone I love to cancer and I know that disease as well, maybe better than ALS and I see the difference in support. I suspect it is the hopelessness that exhausts people. With cancer there is so much media coverage and so many reports of innovative ideas that we have hope. We see progress, real or exagerated, and we believe in the cause. We see survivors. My mother is a breast cancer survivor, and knowing that walking for a cure or wearing a pink ribbon represents her survival seems to make the effort worthwhile.
Then there is ALS. The overall reaction is less of a "battle cry" and more of a note of Despair. Despair does not inspire and it does not attract support. The few who do well with this disease are the ones who promise hope and a cure... and without naming names, many of those are pocketing a lot of cash and not delivering anything but a promise. The 60-Minute program about snake oil salesman that aired last night is a fine example.
So, I am going to ask that we refine this list and I am going to ask that we keep asking. I am going to keep asking, not for money from people but for an understanding that this disease needs attention. The people with ALS are not getting fair attention and until they do, they will be left to weed their way through thieves, bad information and ignorence. Hope doesn't always have to be a cure, although we would all like that. Hope can be respect, understanding, support and love.

 

[indigosd]

I agree! How do we develop a workable plan?

 

[jamorel]

The list is important because how can we ask for help when we don't know what help looks like? People need direction including people affected with this disease.
A watch-dog service, for instance, is not so difficult to create if we have talent and volunteers. In fact, this forum acts as a watch-dog service at times... it just doesnt have the public and media support. A watch dog system could be web based. Who and how is where we need help.
A handbook is also quite do-able and could be both print and web based.
Health care... we need bigger guns, but that doesn't make it impossible.
the Registry: I have spoken to our local and national ALS Societies and they tell me that something is in the works, but that is the equivelant of saying the cheque is in the mail. I think our societies do great work, but they have their limitations just as the rest of us and for similar reasons. Its hard to spearhead this unless it comes from the top down. Anyone out there know someone at the top?
If you are a visitor and wish to respond by email rather than here, you can email me at [email protected]

 

[irismarie]

I keep trying. Today I wrote to Michael Moore. W can only hope one day someone will listen

 

[jamorel]

I did get an email from a journalist in Japan this morning because of this thread, and he is going to research the system in his country. It is a great big world full of possiblities. PS. Thank you Iris Marie and thank you Kay Marie for not giving up.

 

[bythesea]

jamorel and indigo--I just facebooked large junks of your posts. You are so right on!

It's very nice to always have cute family photos and videos (or just plain "look at me drunk" photos) that are typical of Facebook but I joined to shove myself in my friends and familys' face. Look what I can't do. Gee I went to such and such doctor or this is a photo of an EMG machine--it hurts like hell.

It's kind of a self documentation--happy reading.

 

[indigosd]

14. I want less apathy and despair and MORE HOPE!

 

[indigosd]

"If you have come to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together." ~ Aboriginal activists group, Queensland, 1970s

 

[bythesea]

I found this today when looking up whether Medicare will cover a bed rail

Reform - Improvement Standard

"the medicare improvement standard:
a barrier to necessary care


Mrs. P, 68 years old, was diagnosed with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig's Disease) five years ago. She now needs a wheelchair, cannot stand on her own, needs assistance to move from bed to wheelchair, and is losing the use of her arms and hands. Mrs. P has been receiving home health care including nursing twice per month, OT twice per month and daily home health aide services. Despite her need for this care, Mrs. P's Medicare Advantage plan and home health agency informed her that Medicare would no longer cover her home care because she is chronic and "stable in her disease state," and will not improve. She was informed that she therefore does not need skilled care – a prerequisite for Medicare home health coverage.



For decades Medicare beneficiaries, particularly those with long-term, debilitating conditions and those who need rehabilitation services, have been denied necessary medical and rehabilitative care based on an "Improvement Standard." Indeed, this is one of the leading rationales for unfairly restricting Medicare coverage for chronically ill people in need of health care and rehabilitative services".

In other words if you are too sick and will not get better, go fly a kite. What is wrong with this picture? What rationale is this based on. We always had death panels.