This is my first post on the blog...this is more informational, some ideas and information for those who may have been recently diagnosed or anyone dealing with ALS who feels like they don't know where to start. The following is my experience and some things I found helpful in navigating this disease
Receiving a diagnosis for ALS/Lou Gehrig's Disease is one of the most difficult diagnoses that anyone or family could ever hear. I know it was for myself and my family. Today with computers and smartphones leading up to a diagnosis most people do two things.
First we Google the symptoms and have panic when ALS or a picture of Lou Gehrig comes up. Most people do things to prove they don't have this terrifying terminal disease. I tried everything to test myself and convince myself that I did not have ALS. We learn about the disease and the mental, physical and emotional games it plays with everyone.
Second, we try to find anything else that it could be. Lyme, MS, benign fasciculation syndrome, and like most we even hope for cancer. At least with cancer their might be a chance.
After receiving the 2-5 year death sentence we change to a new mode and how are we going to get through this together, as a family.
There is a lot of information out there for people to read on what to do. I wish I found a site with what actual ALS patients did to help move through the disease. Below you will find some things that can help you deal with what is in store.
Go to an ALS clinic.
Clinic or any neurological waiting room is the scariest place on the planet. Wondering what the person next to you has can be a fun game. I think it is OK to laugh a little because you are in the club and laughing can help relieve the stress. When I see a power chair a few things go through my mind. I look at the hands and forearms first, then the legs, I look to see how thin and say, yep, ALS. Then I think how long have they had this and when will I be there? After the scary stuff is over clinic can be very helpful with managing the disease by experts. It is better to go through this with a team than on your own or just a doctor. A doctor by themselves may not know as much about the best way to manage the challenges ahead. If you are not happy with your clinic make a change.
Take help when offered.
We have not been ones to ask or really want help in the past. We have always been self sufficient as a family. But believe me if anyone offers to help take it with open arms. If you don't people may stop offering. If people ask to help, here are some ideas. Food/dinners, lawn care, fund raiser, snow removal, watch the kids, etc... Even the little things can take the stress out of the day. Your spouse can not do everything.
Keep busy.
I do not sit and stare at the wall and give myself a pity party. That helps no one and puts more stress on everyone around you. Find something you like or want to do for a hobby. Try to stay positive and find good out of everyday. It is there you just need to look. Enjoy the time you have, unfortunately I have a shorter expiration date than I thought and I will have enjoyment as long as possible. I coach my sons soccer team and do not plan on stopping anytime soon. We have this blog, it helps us get awareness out there, helps us cope and if we are lucky help someone else. Start something for you kids and grand kids to remember you by.
Plan ahead.
Do not wait until you need something to get it or ask. Most of us do not know how to use stuff even though it seems simple. Seeing Grandma or Mr. Fredricksen using a walker looks easy. Well they do not have ALS and if you have spastic legs you need to mess with it a little. Wheelchair, if you want to use a manual chair remember your hands and arms are part of the ALS package and you may need to get use to it. From what I hear the eye gaze technology takes time to get good at.
Home modifications take time and money. If you don't have a first floor handicap bathroom and you wait too long your not going to smell real good. Make a plan with what you are going to need and look at your current symptoms and ask yourself what may I need next, work on it and then move to the next item. Handicap vehicle, eventually you will be in a wheelchair of some sort and need a new ride. Look now and plan for what you need and can afford.
Good resources
Hopefully you already have been to these sites, but if not please visit. Explore and learn.
http://mda.org/disease/amyotrophic-lateral-sclerosis
http://www.alsa.org/
https://clinicaltrials.gov/
Financial Information
Get together and know your finances ASAP, do not wait! ALS can and will cause a significant strain on your finances. At some point ALS will rear its ugly head into your wallets. Here is some information I have found helpful.
Social Security Disability Insurance
ALS is one of the few diseases that it is quick and easy to get approved for SSDI. Also, ALS is one of 2 challenges that entitle you to receive Medicare right away. Now for SSDI even though you get quick approval it still takes 5 months to receive the benefits. Here is where you need to think and plan for the future. I recently stopped working, first reason, is that it was getting harder being in outside sales. Second, I wanted to make sure I have SSDI benefits while I can still take care of myself and my wife can work full time as long as possible. If you wait too long there could be a time with little pay. Think about it. I know people want to beat and fight this disease and show it that it will not take their career, but for most ALS patients at some point unless your a writer you may have to leave work.
You can see your SSDI benefit by looking at the paper you receive every year in your mailbox or logging on to this site: https://secure.ssa.gov/RIL/SiView.do
Find more about your disability benefits at: http://www.ssa.gov/disability/index.htm
Long Term Disability Insurance
Hopefully you chose long term disability insurance as a benefit with your employer. LTD typically pays 60% of your pay up till 65 years of age and usually begins 6 months after you are disabled. Also, if you have short term disability that will help bridge the gap before long term disability. STD generally pays 50% for about 6 months. When you decide to leave work you hopefully have some sick and vacation time in the bank, this can also make it easier. Again with this it is about timing so that you can pay the bills and your spouse can work longer before you need full time care.
If you have SSDI and LTD it can be a good amount.
Life Settlements/Viatical settlement
More information: http://www.alsa.org/als-care/resources/publications-videos/factsheets/viatical-settlements.html
You may want to contact a lawyer and or accountant if you chose this as an option.
Life Insurance Loan
If you have a life insurance policy with a company outside of work you maybe able to take a loan up to 50% of face value if you have a terminal illness. This way you can keep the policy. Each insurance company is different on how they do this. Speak with your agent to see if this is right for you. You may have to reapply each year or repay the loan. Again, speak with your agent. Also, the link above can help.
Family
Wealthy Uncle? Do not be afraid or too proud to ask for help from family. Your not looking to get a Corvette or a wide screen TV but something to help you and your family live and deal with this difficult disease. Before you reach out for financial help have your ducks in a row and details on how this will help you. If they understand the need it will be easier. Do not ask for $10k. Tell them you need X and it will do XYZ for me and can they help? For some items they may get some money back when it is not needed anymore and it is sold. I know it is morbid, but it may help get what you need.
As we learn and navigate ALS, I will share any information that may help, if you have ideas or items that may help me or others please feel free to comment on this post.
I hope this helps.
Bert
Receiving a diagnosis for ALS/Lou Gehrig's Disease is one of the most difficult diagnoses that anyone or family could ever hear. I know it was for myself and my family. Today with computers and smartphones leading up to a diagnosis most people do two things.
First we Google the symptoms and have panic when ALS or a picture of Lou Gehrig comes up. Most people do things to prove they don't have this terrifying terminal disease. I tried everything to test myself and convince myself that I did not have ALS. We learn about the disease and the mental, physical and emotional games it plays with everyone.
Second, we try to find anything else that it could be. Lyme, MS, benign fasciculation syndrome, and like most we even hope for cancer. At least with cancer their might be a chance.
After receiving the 2-5 year death sentence we change to a new mode and how are we going to get through this together, as a family.
There is a lot of information out there for people to read on what to do. I wish I found a site with what actual ALS patients did to help move through the disease. Below you will find some things that can help you deal with what is in store.
Go to an ALS clinic.
Clinic or any neurological waiting room is the scariest place on the planet. Wondering what the person next to you has can be a fun game. I think it is OK to laugh a little because you are in the club and laughing can help relieve the stress. When I see a power chair a few things go through my mind. I look at the hands and forearms first, then the legs, I look to see how thin and say, yep, ALS. Then I think how long have they had this and when will I be there? After the scary stuff is over clinic can be very helpful with managing the disease by experts. It is better to go through this with a team than on your own or just a doctor. A doctor by themselves may not know as much about the best way to manage the challenges ahead. If you are not happy with your clinic make a change.
Take help when offered.
We have not been ones to ask or really want help in the past. We have always been self sufficient as a family. But believe me if anyone offers to help take it with open arms. If you don't people may stop offering. If people ask to help, here are some ideas. Food/dinners, lawn care, fund raiser, snow removal, watch the kids, etc... Even the little things can take the stress out of the day. Your spouse can not do everything.
Keep busy.
I do not sit and stare at the wall and give myself a pity party. That helps no one and puts more stress on everyone around you. Find something you like or want to do for a hobby. Try to stay positive and find good out of everyday. It is there you just need to look. Enjoy the time you have, unfortunately I have a shorter expiration date than I thought and I will have enjoyment as long as possible. I coach my sons soccer team and do not plan on stopping anytime soon. We have this blog, it helps us get awareness out there, helps us cope and if we are lucky help someone else. Start something for you kids and grand kids to remember you by.
Plan ahead.
Do not wait until you need something to get it or ask. Most of us do not know how to use stuff even though it seems simple. Seeing Grandma or Mr. Fredricksen using a walker looks easy. Well they do not have ALS and if you have spastic legs you need to mess with it a little. Wheelchair, if you want to use a manual chair remember your hands and arms are part of the ALS package and you may need to get use to it. From what I hear the eye gaze technology takes time to get good at.
Home modifications take time and money. If you don't have a first floor handicap bathroom and you wait too long your not going to smell real good. Make a plan with what you are going to need and look at your current symptoms and ask yourself what may I need next, work on it and then move to the next item. Handicap vehicle, eventually you will be in a wheelchair of some sort and need a new ride. Look now and plan for what you need and can afford.
Good resources
Hopefully you already have been to these sites, but if not please visit. Explore and learn.
http://mda.org/disease/amyotrophic-lateral-sclerosis
http://www.alsa.org/
https://clinicaltrials.gov/
Financial Information
Get together and know your finances ASAP, do not wait! ALS can and will cause a significant strain on your finances. At some point ALS will rear its ugly head into your wallets. Here is some information I have found helpful.
Social Security Disability Insurance
ALS is one of the few diseases that it is quick and easy to get approved for SSDI. Also, ALS is one of 2 challenges that entitle you to receive Medicare right away. Now for SSDI even though you get quick approval it still takes 5 months to receive the benefits. Here is where you need to think and plan for the future. I recently stopped working, first reason, is that it was getting harder being in outside sales. Second, I wanted to make sure I have SSDI benefits while I can still take care of myself and my wife can work full time as long as possible. If you wait too long there could be a time with little pay. Think about it. I know people want to beat and fight this disease and show it that it will not take their career, but for most ALS patients at some point unless your a writer you may have to leave work.
You can see your SSDI benefit by looking at the paper you receive every year in your mailbox or logging on to this site: https://secure.ssa.gov/RIL/SiView.do
Find more about your disability benefits at: http://www.ssa.gov/disability/index.htm
Long Term Disability Insurance
Hopefully you chose long term disability insurance as a benefit with your employer. LTD typically pays 60% of your pay up till 65 years of age and usually begins 6 months after you are disabled. Also, if you have short term disability that will help bridge the gap before long term disability. STD generally pays 50% for about 6 months. When you decide to leave work you hopefully have some sick and vacation time in the bank, this can also make it easier. Again with this it is about timing so that you can pay the bills and your spouse can work longer before you need full time care.
If you have SSDI and LTD it can be a good amount.
Life Settlements/Viatical settlement
More information: http://www.alsa.org/als-care/resources/publications-videos/factsheets/viatical-settlements.html
You may want to contact a lawyer and or accountant if you chose this as an option.
Life Insurance Loan
If you have a life insurance policy with a company outside of work you maybe able to take a loan up to 50% of face value if you have a terminal illness. This way you can keep the policy. Each insurance company is different on how they do this. Speak with your agent to see if this is right for you. You may have to reapply each year or repay the loan. Again, speak with your agent. Also, the link above can help.
Family
Wealthy Uncle? Do not be afraid or too proud to ask for help from family. Your not looking to get a Corvette or a wide screen TV but something to help you and your family live and deal with this difficult disease. Before you reach out for financial help have your ducks in a row and details on how this will help you. If they understand the need it will be easier. Do not ask for $10k. Tell them you need X and it will do XYZ for me and can they help? For some items they may get some money back when it is not needed anymore and it is sold. I know it is morbid, but it may help get what you need.
As we learn and navigate ALS, I will share any information that may help, if you have ideas or items that may help me or others please feel free to comment on this post.
I hope this helps.
Bert
RSS Feed
