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kmendsley

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Country
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State
CA
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Highland
I have been diagnosed with ALS. The initial shock is nearing and now the thoughts of what do I need to do now come into play. I need help from caregivers and PALS. once you found out the your own diagnoses, or of your friend/family/spouse what steps you had to take next...or maybe a website that tells me a checklist of what I should be doing. Like I have said before family is no help so I need to get all arrangements set while I still can. For example, how do I apply for disabled parking, when should I get a wheelchair...should I buy one? Rent one? Legal documents that should be done? I am pretty much in the dark here any help would be appreciated.:cool:
 
my advice. start making your body as healthy as possible through good diet and light exersise. visit web site "life with als.com" and click on content. i found a lot a valuable information on this site by joel. diet supplements help the body get healthy but will not stop, reverse or change progression. what supplements? a meridian will recommend what the body needs. if loosing weight increase calorie intake with between meal health drink made in your own blender. if interested i will give you my recipiet. have maintained same weight since oct/2009 sorry to hear of your diagnoses but you will get your questions answered here. welcome
 
I'm so sorry for your diagnosis. I take it your legs are affected; go to the Motor Vehicle in CA and pick up a form for handicap parking, which your primary care doc can sign--be sure and check the maximum length of time--otherwise you have to renew every 6 mos.

Search the web for the ALSA of California, find on it a toll free number to call, and you will find them very helpful--to the extent of probably finding loan closet items including a power chair. The coordinator assigned to your area will likely do a house visit, which is also helpful. That person is the one who you will be emailing and calling for many things, most likely. Also, find your MDA assiciation--we're "Jerry's Kids", and with a Neuro's signature, they may also be helpful--they provide differently from the ALSA, so be sure and contact both.

People do their legal work at different times. Visiting and reading here at the forum, which I assume you've begun doing, means you'll read about the various on-set issues, you know everyone's progression is very different from another's, and you will or have already read about the PEG for feeding, the Bipap for breathing helps, and also about Venting as a possibility. I have not been following the "Do I Have" section and don't know what you've already shared, but you can download your state's forms for Advanced Directives, as well as for DNR if you so choose. My husband is automatically my Power of Attorney, so I know nothing about that--unless someone else answers your question on that, I recommend a search (see the search above in the blue bar?) The word is in white--or do an internet search.

The ALSA has materials to read online, and also in booklet form which was brought to me. These books hold answers to many basic questions.

Very best wishes to you. I hope your period of shock isn't terribly long or deep. I will now search for your previous posts.

Ann
 
Post held for moderation--it will turn up. Kell Bell--so sorry, I do remember you, of course. Forgive the brain, please.
Ann
 
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First contact your local ALS association they are an incredible amount of help. They will guide you all the way and they have a loan locker with equipment. As for family and freinds tell them as you feel needed. I hope and pray they will help you. Record your voice now for later. Go and do the things you enjoy most as much and for as long as you can. We will be here to support you also. May God bless you on your journey.
 
First, I am so sorry. It is hard to keep moving during the initial shock, but you sound like someone who is going to jump into action. That is exactly what I did.

Are you a veteran? Are you advancing rapidly? Are you planning to quit work soon or have you already? Answers to these questions will determine what course of action you take. My husband received his diagnosis on 4/16/10 - three days after starting short term disability. By 4/30/10, I had turned in all paperwork with the VA, filed for SSDI and medicate, filed on our long term care policy and started the long term disability claim. By 5/30/10, most of the equipment he would need was delivered. So far, I don't think we have needed any equipment that we didn't have waiting. The only trouble I've had is in getting caregivers for some respite. In the grand scheme of things, my problems are few.

Like I said, action keeps me sane. Let me know where you are, and I'll be glad to help you get going. I can promise that anything I leave out, someone else will think of. These are exceptional people on the forum.
 
KellBell,

I'm so sorry to hear you've been diagnosed with ALS. Here's hoping for a snail's pace progression for you!

As far as the legal stuff, I filled out a DNR (Do Not Resuscitate) form as I already have a will in place. The DNR is sometimes referred to as a living will. It lets the medical community (and everyone else) know your desires when it comes to life support, etc...

For the present, I'd let the paperwork sit for a while. Time to think about that a bit down the road.

I was so hoping for a different diagnosis for you, Kel.
 
UC, San Diego ALS Center
Department of Neurology
Outpatient Center, 3rd Floor, Suite 1
200 West Arbor Dr.
San Diego, CA 92103-8674
Medical Director - Michael Flink, D.O.
Phone: 619-43-5300
Fax: 619-543-5793

The above is the ALS clinic that seemed closest to the city you listed. Start with them--and with the counselors in your area.

Here is the support info for your area.

Greater San Diego Chapter
7920 Silverton Ave, Suite E
San Diego, CA 92126
Phone: 858-271-5547
[email protected]

When to do things is largely going to depend on how you progress. If you're having trouble walking--and/or falling--then by all means look for help with that. It's better to be safe rather than risk falls in my humble opinion. If I remember correctly, you have hand issues--so a scooter or power chair might be better than a manual wheelchair. Perhaps a rollator walker would work...just depends on your abilities.

There will be a lot of support through the agencies in CA, I'd think. There are other locations--but the above seemed closest to your city.

I think someone mentioned the loaner closets--they will loan you items you need. It's best to learn how to use various things before you need them sometimes.

Hopefully since you have no family support, you'll find some of the support you need here.
 
Dear Kell Bell,
I'm so sorry to hear about your diagnosis. You have already gotten some great advice from some of our forum group. I won't be repetitive. Give yourself some time to let this sink in, then try your hardest to stay positive. It's hard to do some days, but I have found it helps. Try to plan some events to look forward to in the near future. Most of the time this works for me and I hope this idea can help you too.
Thinking of you,
Mary
 
I didn't read all the replies but I am a few months into this and had the same questions you brought up. Get ahold of your ALS association I think every state has one. They have a day once a month or so that will answer almost every question you brought up as well as provide resources for things you need them for. They can answer your questions if you don't want to wait for the work day. Very special people with huge hearts!
 
Hey Zaphoon

A DNR and a living will are two different documents.

A living will is a direction setting out the measures the patient wants his/her health care providers and family to take to keep them alive. In simple terms, the directions can range from "do everything possible to keep me alive" to "don't do anything to keep me alive but ease my pain".

A DNR is a specific direction to your health care providers setting out the conditions where you are not to be resuscitated.

Although almost all forms of living wills will have some form of DNR direction contained within it (why else would you do it} they don't have to.

PALS should be very careful with a DNR especially those PALS considering going on a ventilator.

You definitely need a will - but you don't need a living will or DNR if you don't mind saddling your family with this responsibility. Two other good documents to have are a power of attorney for property and, if enforceable in your jurisdiction, a power of attorney for health or personal care. In the event you become incapacitated, these documents will allow a designated person to deal with your property and make decisions about your health care. Otherwise these powers may fail to a public trustee.

kmendsley - the best advice that I can give you is to try not to stress about things- not about diet, legal stuff or ALS - and pick up a hobby if you don't already have one - anything to keep your mind off ALS

Good luck
 
Thanks for setting me straight.
 
If you do not have a living will in place, your family will be interpreting your preferences if you are unconscious or otherwise impaired. This may not be a burden that you want to place on them. If you are ill enough to not be making decisions, they're obviously going to be worried about you, which will reduce their ability to recall/respect your wishes.

So IMHO, a PALS [and anyone else] should make a living will and update it as needed should your wishes or status change significantly. It is also a good time to go through the contents with your closest family so they understand what you want before the need arises. The same goes for decisions like organ/tissue/cadaver donation and services/arrangements-- put it in writing and discuss it with anyone who should know.
 
Hi neighbor!

I agree with "notme" on the importance of getting to an ALS clinic. But I think the one at Loma Linda is closer for you. It's an ALSA sponsored clinic:
ALS Clinic - Loma Linda University Health Care
11370 Anderson Street
Suite 2400
Loma Linda, CA 92354
Medical Director - Laura Nist, MD
Phone: 909-558-2128

I see you're from Highland, so you'll be working with Jenny Claxton from the ALS Association. She is great! She can answer a lot of questions, too. Ask her about the Loma Linda clinic. She can also help with wheelchairs, walkers, and other equipment. She's associated with the LA Chapter, but services the Inland Empire. PM me and I can give you her phone number & email.

In California you can download the DMV form online so you don't have to visit the DMV (yuk!)

Take time for yourself, to let this sink in, and give yourself time to grieve.

Make your bucket list. Travel NOW if you want to, as this will become more and more difficult later.

-Tom
 
Zaphoon - sorry for nit picking. I actually went back to edit my response. Although living wills and DNRs are different - in practice they are the same thing as anyone preparing a living will almost certainly want a DNR direction included. So we are both right.

If you do have strong feelings about being kept alive by artificial and/or extraordinary means, you should definitely prepare a living will.

But if you are undecided you might want to stay clear.

If you would have asked me prior to my diagnosis how bearable life would be if I lost the use of my hands, was unable to feed, dress, drive, blow my nose...or if I had to be hooked up to a machine to help me breathe - I would have said no way. But now that I'm living it - it is not so bad - or at least there is enough good stuff to make it bearable.

I'm 44 with a 3 year daughter. I will probably have to go on a ventilator within the next year. I have no idea what my quality of life will be on a vent - or how much of a burden I will be to my family.

So when it comes to a living will - I just don't know. Maybe I'm being selfish - but I just can't predict what the future holds and how my family and I will cope with it.

I have convinced myself that I will live long enough to see some form of treatment for ALS and that I will survive this disease. Foolish false hope perhaps- but it keeps me going. Prepare for the worst - hope for the best.

The only thing worse than not having a living will/DNR in place at the time of incapacity - is to have a living will/DNR in place that doesn't reflect your current wishes.

I've spoken with a lot of people who were just told "Living will - gotta have it " without any clear understanding of what their feelings and desires were. It is a very personal decision - a must for some - not so much for others. Thinking about what might go into a living will is a good exercise to put your mind on these issues - just be careful - you will know when it is time to put it in writing.
 
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