What a wonderful, exciting, tremendous month this has been for ALS patients, families, doctors and researchers!! Never in my wildest dreams did I ever think pouring a bucket of ice would be so much fun to watch - over and over again!
For me there are three very tangible outcomes from these challenges:
Education and Awareness
Don't feel bad if you really didn't know what ALS was until recently. Before Patrick's diagnosis my knowledge about ALS was about zilch. Unless you said "Lou Gehrig's disease," I wouldn't even know it existed. I would guess if you did a study about two months ago, less than 25% of people would know something about it (this is Cheryl's very unscientific study). What a difference a day makes, today ALS is a household word. Yes, there are those doing the challenge that likely still have no idea what ALS is, with all things we can chose to be ignorant.
Frankly, this challenge has created an interest in a very unknown underfunded disease. Nancy Ferguson, at the Sacramento ALS Office, informed me that the phone has been off the hook at the office with people calling to ask what is ALS and how they can help. So, although some chose to be ignorant, some also chose to make a difference. To the second group I say - hooray for you!
Being Connected and Staying Connected
When you are given a diagnosis of ALS, there is a strong feeling of separation from the "outside world." As human beings, we spend a tremendous amount of time considering the future, i.e. when to retire, what should be my next job step, saving for the next big trip, looking forward to children and grandchildren milestones. ALS changes these plans, it doesn't eliminate them entirely, but it certainly makes you look at time on a more immediate basis. So our thinking is somewhat different than the "normal" person.
To add to this change of thinking, ALS is a diagnosis that until recently was largely unknown. So, while we are thinking about the future differently we are also trying to educate folks on what ALS is. At times I've explained many aspects of ALS to doctors, nurses, friends and strangers. Again, this gives the feeling of "separation" from the outside world.
The unmeasurable benefit of the bucket challenges is providing ALS patients and families with the feeling of being connected to the "outside" world. As I watch these videos and see the support from friends, family and neighbors I realize that ALS is now a household word. People are more interested and educated and now when I say my husband has ALS - often the response is, "did you know, they are doing ice bucket challenges for patients with ALS?" Which always makes me smile, "Did I know??"
Money
Where does the money go? I think this is a very legitimate question. There have been times when I was sent an email by a friend to support them in a walk, run, jump rope, head shaving... all kinds of endeavors to bring money and awareness to a disease. Sometimes I'm familiar with the organization and sometimes not. I have indeed pledged money to a friend, merely to support the friend, not really knowing if my money was being put to good use.
In this, I can assure you, if you donated to the Sacramento ALS Association, you can rest easy that your money is going to help ALS patients directly. The local ALS Association focuses primarily on "patient care." This includes, a loan closet, patient advocacy and outreach, support groups and various grants for caregivers and patients. Here are a few places your money goes...
Travel Costs: If you live outside Sacramento/San Francisco you have to travel to get to your doctors appointments. Many rural places in Northern California have no neurologist and the closest ALS clinics are San Francisco or Sacramento (four hours away from Susanville, my hometown). Grants are provided to families that cannot afford the travel to the clinics, which for an ALS patient often means the difference between getting the care you need or not.
These clinics are important in that they offer multiple disciplines at one appointment. At your appointment they rotate various specialists; nurse, neurologist, respiratory therapist, speech therapist, social worker, physical therapist, occupational therapist, etc. etc. all in one appointment. They are all ALS experts in their respective fields and can be proactive in managing your care. So, going to a general neurologist just isn't enough for an ALS patient.
Loan Closet: I've mentioned this before, but it's such a benefit for ALS patients. As the disease progresses, there are many mechanical devices that ALS patients need that are not covered by Medicare or Insurance. The costs of these can be incredible. Until Patrick got his power wheelchair, we borrowed a take-apart scooter from the closet that on the market runs about $3,000. We paid nothing...
Recently, in support group there was a caregiver that lived in Chico and needed a power wheel chair loaner until her husband's chair came in. The association offered, not only to lend her a chair, but to deliver it to her in Chico.
Grants: Insurance covers some power chair items and not others, weird, huh. One of the features it doesn't cover is the ability to move vertically. This allows for much easier transfers from chair to bed or chair to walker. However, it's not considered medically necessary - a term that irritates the crap out of me. The association provided a grant to cover the cost of this feature for us, the cost was around $2,500. I can tell you Patrick uses this feature every time he gets up from the chair - it's a tremendous asset.
Another grant available for low-income families is a grant to cover some respite costs to provide home health care providers. This allows the caregiver to have a well-deserved occasional break from their role as caregiver.
Staff: There are two patient coordinators, Nancy Wakefield and Nancy Ferguson, at the association. They are invaluable resources for caregivers, patients and family. They visit patients, assess their needs and assist patients throughout the ALS journey. Remember that connection, the association staff, works hard to make patients and their families stay connected to the outside world and have resources available. Nancy and Nancy also run the support groups that I've mentioned many times and are a great source of strength.
Patrick and I are fortunate that we have wonderful family, great friends and a community that often drop by dinners, sends cards and hangs out with us. However this is not the case for some ALS patients. Sometimes relationships are strained, the patient does not have a spouse/partner to care for them or they're just not connected to their local community. These can be very sad cases because ALS will isolate the individual even more. Often the association helps fill this void.
So rest easy, your money is going to good hands!! Here is a link to our Team Timmons ALS Walk Page, if you'd like to make a donation or join the team! The money goes to support the Sacramento ALS Association.
http://websac.alsa.org/goto/TeamTimmons
So in the spirit of ice bucket challenges... here are a few by our family!
Anthony Carrabello
Christian Carrabello
Cheryl Timmons
(if you look at the grandsons, they look like vultures just waiting to strike, I honestly thought I'd wind up in one of those ice bucket challenges gone wrong clips...)
Denise and Mike Tedeschi
And my personal favorite, Sean Timmons.
To everyone who did the ice bucket challenge, donated money or looked ALS up on the web to find out "what it is," a huge thanks. All the best to you and yours!
