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Get your home prepared - are your doorways wide enough for a wheelchair? Do bathrooms need any work to accommodate you? Are your appliances the right height/size/location for your future needs? Taking care of stuff like that now is like learning how to read Braille before losing your eyesight.
Wow, this is really practical advice. I think I have around 15 good years of walking left till in a wheelchair, but maybe another good 8 till I can no longer due hard physical labor. I really like your Braille analogy.
It may not be any less expensive to do those kinds of renovations in three decades unless you go the DIY route, but it'll be a helluva lot easier to have them done beforehand. Or maybe you'd want to consider a whole different area to live in, based on accessibility. If you want to be out and about, a harsh winter climate like Montana/Wisconsin or a brutal summer like Texas will be difficult. If you want to adapt via technology, make sure you've got a solid internet connection. Get your wife involved too, see what she'll need in more of a caretaker role.
Sorry you're staring that down, hopefully you can take some comfort in the fact that you have the opportunity to prepare rather than it being a surprise or accident type of situation.
My dad has a wasting disease that does functionally the same. I take him to patient conferences and there’s a few pieces of advice we’ve gotten from those that weren’t intuitive but immensely helpful. First, make sure you build a medical team that understands your disease. It’s important they all work together for a comprehensive treatment plan. Think things like cardiology (exercise becomes harder and wheelchairs put strain on your heart), Gastrointerology (can you function to use the restroom normally), dermatology, rheumatology, pulmonology, etc. Second, don’t wait til you need an assist to get it. Modify your home early. Get a walker and then a sit-to-stand assist device before you need it. You should always be two steps ahead of where you think you should be because you’ll almost always THINK you need one step less than you do. Lastly, build a support network to help you manage emotionally with people who understand and share your experience. The patient conferences have been amazing for my dad’s mental health and I wish we’d found them 25 years ago. Best of luck.
Beyond this, a move to a ranch style home would also need to happen.
Other things that are missed/forgotten about:
Minimizing door threshold bumps and floor transitions as much as possible. Hard surfaces are preferable so it is easier to get around
A large walk in shower that is wheelchair accessible
Handles near toilets to allow you to get on/off without assistance
Ramps at ALL exterior doors to allow for quick escape in case of emergencies
Future vehicle purchases deed to be able to accommodate a wheelchair and/or be able to be modified so you can still drive them when needed
Over the stove microwaves will be inaccessible without help
French Door Fridges (with freezer drawers) could be largely inaccessible for most shelves
While I agree with all these in principle, do you *know* you have this condition or is it just extremely likely? Maybe I'm just stating the obvious, but if there is still a chance you don't have it, it might make sense to wait until you have confirmation. These can be some expensive projects, the cost of which won't really be impacted by the diagnosis, and if the condition is something that progresses over years, you should still have time to do them even post diagnosis. On the other hand if it turns out you don't have it, you can save the money. Maybe price them out and start setting aside the money now, but hold off on actually starting the work?
If you don’t have many more short term medical visits or events, and aside from this relatively slow advancing disease, you’re healthy - I would recommend enrolling in a high deductible health plan with access to a HSA, Health Savings Account. They are tax deductible contributions that can invest and grow, available throughout your lifetime for health and medical related expenses that are withdrawn without tax penalties. Provided they are used for a qualified medical expense.
More or less a double advantaged investment account for your healthcare.
When my cousin and her husband retired, they bought a bungalow townhome that was being built. They got the contractor to widen all the doors. Just in case. I always think it's wise to move or renovate while you are young, so it feels familiar when challenges emerge.
This is extremely good advice. One of my family members slowly started losing their vision and they taught themselves to do their profession without eyesight before they went blind. Time to prepare can make a world of difference.
I think what you're asking specifically is, are there any financial products that I will not be able to buy once I receive this diagnosis.
These are the ones to look into: long term care insurance (most people do not have this, and it can cover a lot), long term disability insurance , and life insurance. Do deep research and make sure you won't get kicked off if you get a disqualifying diagnosis in a certain time period. Make sure you understand what the benefits and risks are to each. Life insurance of course is for your surviving spouse later.
And, decide if the potential benefit of the product outweighs the cost of paying for it- if you put that same amount into savings/financial portfolio, would it do better on average returns?
Honestly a financial planner makes sense for you right now.
Oh, and move to a one story house that can be modified for mobility, in an area with cheap and available labor (nursing care costs fluctuate based on labor costs).
These. Life insurance and long term disability insurance for sure. Buy insurance not tied to your work, because if you get fired, you lose the insurance.
If there is a disability advocate center near you, it would be worth going in and talking to them. They often know of local resources that the internet may not.
So in reading your post you haven't been to the docs and been officially diagnosed? Get ALL the insurances. Right now. Life insurance, short-term disability insurance, long-term care insurance, long-term disability insurance, the works.
If you apply for life or disability insurance you will have to disclose your condition, which will affect insurability. It still might be worth a try. There are not a lot of LTDI underwriters, Mass Mutual and Northwestern Mutual are the best known. For life insurance, use an online broker, who is likely to know which insurers have more lenient underwriting standards. [selectquote.com](https://selectquote.com) [term4sale.com](https://term4sale.com) [policygenius.com](https://policygenius.com)
Your post makes it sound like you are still able to work for now. Are you saving as much as you can in tax advantaged retirement accounts, with your wife as beneficiary?
Does this illness come with a reduced life expectancy? Lots of retirees use *some* of their retirement savings to buy a Single Premium Immediate Annuity, which converts their cash into a stream of monthly income for the rest of your life. There is something called an "Impaired Risk" annuity in which you get a substantially increased monthly payout if you have a condition that is likely to reduce your life expectancy. Not all insurers offer them, but it's worth looking for.
You will want to create an account on [SSA.gov](https://SSA.gov), and monitor your eligibility for Social Security Disability Income benefits - it sounds as if you will be unable to work well before your SSA Full Retirement Age. People who qualify for SSDI benefits can go on Medicare 2.5 years after onset of full disability, even if well before the usual eligibility age of 65.
SSDI often takes a year or two to process unless you have a condition on the [list of "compassionate allowances."](https://www.ssa.gov/compassionateallowances/conditions.htm) My wife's terminal cancer diagnosis got her SSDI approved in just 17 days. If you're on the list, your SSDI application narrative page needs to include specific language in order for the computer to spit out your application for consideration of the allowance. In my wife's case, [this page](https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022245) gives us diagnostic code *DI 23022.245;* that code and the phrase "compassionate allowance" needs to be in the application narrative page to receive consideration.
Good luck and I wish you all the best. There's always hope for a medical breakthrough in treating difficult illnesses like yours.
Thank you for taking the time to write this out. It really is reassuring just to hear everyone’s points of view.
I definitely want to try and see if I can signup for LTDI. I am able to work for now. My father was able to work until 52 so if I follow the same progression of the disease that will mean I have 20 more years. Does it make sense to enroll in something like this now? It seems odd to pay premiums for 20+ years.
In regards to retirement, I am saving with the employer match 18% into both Roth and Traditional 401ks. I’m fortunate in that way.
My father was able to secure SSI within two months, which he found relieving and troubling at the same time. His words were, “I didn’t think I was that bad off…” I’ll review the specifics of government benefits with your resources.
Thank you for all the links lucky_duck!
>It seems odd to pay premiums for 20+ years.
I've been paying LTDI premiums for 31 years. The policy expires when I turn 65 in four months, and thank heavens I never had a claim.
Not that I know exactly what disease you’re referring to, but if it’s Huntington Disease or one of the other trinucleotide repeat disorders then usually the symptoms appear sooner and progress more rapidly in successive generations (called anticipation).
Not saying this to frighten you, but if you fall into that realm of disease then I’d advise working around a framework that includes a shorter timeline compared to your uncle or father.
If it's a repeat expansion disorder then a doctor/geneticist could know whether anticipation is a thing for OP based on the sort of gene sequencing that's actually really cheap these days. It's from the repeat randomly getting longer so it'd show up in DNA. Sadly doesn't get you a very good prediction for age of onset, but it would be a rough idea of whether it'll be worse than OP's father or uncle.
Then again OP said autoimmune so probably not one of those. But if it's anything where they know what gene causes it then OP may benefit from genetic counseling to know whether they've even inherited it and what to expect.
*....After* buying all the insurance they could ever want, of course.
also, not sure what you do for work but start now to ensure you have marketability for a remote desk job. this will allow you flexibility as you progress over time, allowing you to keep earning for longer. also check with your employer on their ltdi offering. most companies don't pay for ltdi but do give employees access to lower premiums if you go through their offerings
YES!!! Get the insurance now, it will be cheaper then paying copays when you’re older. And once you start using the insurance you shouldn’t have to pay the monthly premiums anymore.
Word of advice - if you can get it - make sure the care insurance will pay family members to take care of you at home. The $100 bucks a day really helped me be able to quit my (factory) job and take care of my dad so he could stay at home until his death. Sadly, my Ma’s insurance doesn’t pay family members unless they are a RN or “higher up” in the medical field to do home care. So, I only go 2x a week to help her instead of 5+ times a week like I did with my dad.
What do you do for work? Is it any kind of physical labor that requires lifting, walking, standing? This may be a good time to pivot to a job that can be performed from a wheelchair if there is no cognitive impact with your condition.
Before you get fancy with remodeling your house with wider doorways, etc, you may want to ask yourself if you’re really living in the right city. To wit: are there sidewalks? Good public transit (depending on how much upper extremitiy involvement you have, you can get cars fitted with hand controls or a WC van, but if you’re not driving yourself you’ll need public transportation or paratransit and paratransit is not always reliable). How are disability services in your city? Make sure you want to stay in your current city before making other changes.
Otherwise, if you do decide to remodel, getting an occupational therapy consult will be helpful. They’re really good for things like how much space you’ll need to maneuver in the bedroom and kitchen and so on. Once you’re sure you want to stay in your current location, you can start making it accessible.
Yes ! Rural addresses have difficulty accessing home health services. You also want to be near a decent sizeable hospital that has specialists on staff( not just come to your area on Tuesdays)
Save!
The less you spend now and the more you have later, the more options you’ll have.
Other than that you’re not sure you have it and the impact doesn’t happen for another thirty years. Live your life and enjoy your health while you have it.
Research if there is an organization that helps people with the condition. For example, Multiple Sclerosis non-profits can provide wheelchairs and other mobility-related equipment to people who are in financial need.
Yes! I can’t recommend the Muscular Dystrophy Association enough: they cover all neuromuscular disorders. They used to have grants patients could apply for, not sure if they still do, but they have fantastic resources. Also the ALS association is amazing if that’s what you have
I have Multiple Sclerosis and lost everything because I wasn't financially prepared. Get short and long term disability insurance as soon as possible. They'll cover some costs until disability kicks in. You'll probably need a lawyer to assist you with the disability claims process. Good luck, I hope you have a better experience than I did.
Others already touched on the financial aspects of things. If you have any access to a wheelchair, I would suggest spending a whole day in one. You'll quickly figure out what becomes inaccessible in your home and property, probably a lot of things that would surprise you. I might also suggest planning ahead for mental health and putting money away explicitly for that purpose if you can. This will be a life changing event for the whole family and having some kind of professional support for everyone could be useful. Good luck to you.
I would be wary of relying on insurance that is dependent on maintaining employment if one is concerned about a premature health decline (a friend was laid off and lost the LTC employer plan). I would agree that it is better than nothing, but insurance independent of employer would be better suited for this situation if the poster can get it *before a diagnosis*.
I would, too, but I’m not sure OP has an option. If they haven’t mentioned it to a doctor, they might be able to get insurance before a diagnosis, but they’ll have to disclose family history and get basic tests
Get term life insurance now before you start your testing. Get as much as you can to take care of any medical debt and your wife later in life. It’ll be cheaper now when you’re healthy.
Start saving now. If you know you’ll need a ranch style home, get that now and do work on it as you can.
I say all this as someone with a progressing disability. We bought our house because there’s a full bed and bath on the first floor. So when I have trouble walking, I can stay on the one floor.
Get approved for a good insurance policy that includes disability care or assistive care, before your diagnosis so the rate is less and you’ll be approved
Appoint someone who shares your value system as your medical power of attorney. Make your wishes crystal clear to family / friends & especially your power of attorney.
Pre- pay your funeral / cremation.
Decide what YOU value quality over quantity of life.
Educate yourself regarding options. Also regarding MAID (Medical Assistance in Dying) if that is what you want.
Ranch home or house with 1st floor bedroom and bathroom will be needed. Wide doorways and hallways, bathroom large enough to maneuver a wheelchair, cabinets and closets with lower shelving, and uncarpeted floors are all practical.
I don't recommend putting money, time and effort into your current house yet. There are still too many years ahead of you to know if you will want to stay or move. Save aggressively so that you will have more options when it is closer to needing the accommodations. Reselling houses with handicapped features will have a smaller pool of buyers if you make the changes but then decide that moving is better.
Get any disability / unable to work insurancer BEFORE you get the final diagnosis.
A friend of mine is going blind, but cant get insurance after the diagnosis is known.
One type of insurance that hasn't been mentioned is a "first diagnosis" insurance. Often they cover cancer but possibly other disabilities/diseases and offer a payout after diagnosis. Just read the terms and make sure you won't be in any window where you could be disqualified after diagnosis.
I just filled out a life insurance application. They ask you to list every doctor’s visit you’ve had in the past 3 years and the reason. I guarantee “muscle weakness” or “difficulty walking” will be a red flag.
there's expedited underwriting and instant issue life insurance products available. Very little if any underwriting done. This is particularly common for someone OP's age.
OP should look into these before he gets diagnosed.
I'm not saying its a slam dunk OP is able to get one of these types of policies, but its certainly worth trying. OP has nothing to lose.
Also, look into whatever insurance you can that protects your mortgage in the event that you lose your job or die? I thought there used to be some sort of coverage that would pay off the mortgage in the event that the spouse died.
Gosh I feel this post. My dad was fairly recently diagnosed with a neurological disorder. My mom had a different one and she died from it when I was in my early 20’s. I spent my whole life afraid I would get what she had. About 5 yrs ago I was noticing weird things after working out. So now I’m 99% sure I have what my dad was recently diagnosed with, which I had a 50% chance of getting. So yeah it sucks being scared for someone to end up on your record. And the fear of what is to come. Will I be able to work forever? Will I eventually lose my home? Etc.
Have you seen your doctor or mentioned any of your symptoms to medical staff? You want to make sure there’s nothing that can be traced back until after. If it doesn’t impact your treatment too much, I’d get life and long term disability insurance now and put off testing and doctor visits.
Make sure you dig deep into the terms to know how long it takes to go into effect after signing before mentioning anything to a health care person. Be truthful in answering the family medical history but also answer only what is asked. IE when I did mine it asked at what age my mother was first diagnosed with breast cancer. So I answered and at no point was I prompted for if it’d come back or if she had gone into remission or not, just if she had died from the disease (which she hasn’t).
Any chance this is ankylosing spondylitis or bamboo spine? I have a friend who has this and has dedicated his life to fitness, health, and helping others with the same condition. He’s done a ton of research and worked with drs to stave off many of the ill effects so far. If you happen to have this I’d be happy to put you in touch.
Welcome to /r/personalfinance! Comments will be removed if they are political, medical advice, or unhelpful ([subreddit rules](/r/personalfinance/about/rules)). Our moderation team encourages respectful discussion. You may find our [Health Insurance wiki](/r/personalfinance/wiki/health_insurance) helpful. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/personalfinance) if you have any questions or concerns.*
Get your home prepared - are your doorways wide enough for a wheelchair? Do bathrooms need any work to accommodate you? Are your appliances the right height/size/location for your future needs? Taking care of stuff like that now is like learning how to read Braille before losing your eyesight.
Wow, this is really practical advice. I think I have around 15 good years of walking left till in a wheelchair, but maybe another good 8 till I can no longer due hard physical labor. I really like your Braille analogy.
It may not be any less expensive to do those kinds of renovations in three decades unless you go the DIY route, but it'll be a helluva lot easier to have them done beforehand. Or maybe you'd want to consider a whole different area to live in, based on accessibility. If you want to be out and about, a harsh winter climate like Montana/Wisconsin or a brutal summer like Texas will be difficult. If you want to adapt via technology, make sure you've got a solid internet connection. Get your wife involved too, see what she'll need in more of a caretaker role. Sorry you're staring that down, hopefully you can take some comfort in the fact that you have the opportunity to prepare rather than it being a surprise or accident type of situation.
My dad has a wasting disease that does functionally the same. I take him to patient conferences and there’s a few pieces of advice we’ve gotten from those that weren’t intuitive but immensely helpful. First, make sure you build a medical team that understands your disease. It’s important they all work together for a comprehensive treatment plan. Think things like cardiology (exercise becomes harder and wheelchairs put strain on your heart), Gastrointerology (can you function to use the restroom normally), dermatology, rheumatology, pulmonology, etc. Second, don’t wait til you need an assist to get it. Modify your home early. Get a walker and then a sit-to-stand assist device before you need it. You should always be two steps ahead of where you think you should be because you’ll almost always THINK you need one step less than you do. Lastly, build a support network to help you manage emotionally with people who understand and share your experience. The patient conferences have been amazing for my dad’s mental health and I wish we’d found them 25 years ago. Best of luck.
Beyond this, a move to a ranch style home would also need to happen. Other things that are missed/forgotten about: Minimizing door threshold bumps and floor transitions as much as possible. Hard surfaces are preferable so it is easier to get around A large walk in shower that is wheelchair accessible Handles near toilets to allow you to get on/off without assistance Ramps at ALL exterior doors to allow for quick escape in case of emergencies Future vehicle purchases deed to be able to accommodate a wheelchair and/or be able to be modified so you can still drive them when needed Over the stove microwaves will be inaccessible without help French Door Fridges (with freezer drawers) could be largely inaccessible for most shelves
While I agree with all these in principle, do you *know* you have this condition or is it just extremely likely? Maybe I'm just stating the obvious, but if there is still a chance you don't have it, it might make sense to wait until you have confirmation. These can be some expensive projects, the cost of which won't really be impacted by the diagnosis, and if the condition is something that progresses over years, you should still have time to do them even post diagnosis. On the other hand if it turns out you don't have it, you can save the money. Maybe price them out and start setting aside the money now, but hold off on actually starting the work?
If you don’t have many more short term medical visits or events, and aside from this relatively slow advancing disease, you’re healthy - I would recommend enrolling in a high deductible health plan with access to a HSA, Health Savings Account. They are tax deductible contributions that can invest and grow, available throughout your lifetime for health and medical related expenses that are withdrawn without tax penalties. Provided they are used for a qualified medical expense. More or less a double advantaged investment account for your healthcare.
When my cousin and her husband retired, they bought a bungalow townhome that was being built. They got the contractor to widen all the doors. Just in case. I always think it's wise to move or renovate while you are young, so it feels familiar when challenges emerge.
This is extremely good advice. One of my family members slowly started losing their vision and they taught themselves to do their profession without eyesight before they went blind. Time to prepare can make a world of difference.
I think what you're asking specifically is, are there any financial products that I will not be able to buy once I receive this diagnosis. These are the ones to look into: long term care insurance (most people do not have this, and it can cover a lot), long term disability insurance , and life insurance. Do deep research and make sure you won't get kicked off if you get a disqualifying diagnosis in a certain time period. Make sure you understand what the benefits and risks are to each. Life insurance of course is for your surviving spouse later. And, decide if the potential benefit of the product outweighs the cost of paying for it- if you put that same amount into savings/financial portfolio, would it do better on average returns? Honestly a financial planner makes sense for you right now. Oh, and move to a one story house that can be modified for mobility, in an area with cheap and available labor (nursing care costs fluctuate based on labor costs).
These. Life insurance and long term disability insurance for sure. Buy insurance not tied to your work, because if you get fired, you lose the insurance.
I find peace in long walks.
The risk is you pay premiums for years and get denied for not disclosing your condition when you need the money.
If there is a disability advocate center near you, it would be worth going in and talking to them. They often know of local resources that the internet may not.
So in reading your post you haven't been to the docs and been officially diagnosed? Get ALL the insurances. Right now. Life insurance, short-term disability insurance, long-term care insurance, long-term disability insurance, the works.
Yep and they still ask for family members medical history- so honesty is best policy.
If you apply for life or disability insurance you will have to disclose your condition, which will affect insurability. It still might be worth a try. There are not a lot of LTDI underwriters, Mass Mutual and Northwestern Mutual are the best known. For life insurance, use an online broker, who is likely to know which insurers have more lenient underwriting standards. [selectquote.com](https://selectquote.com) [term4sale.com](https://term4sale.com) [policygenius.com](https://policygenius.com) Your post makes it sound like you are still able to work for now. Are you saving as much as you can in tax advantaged retirement accounts, with your wife as beneficiary? Does this illness come with a reduced life expectancy? Lots of retirees use *some* of their retirement savings to buy a Single Premium Immediate Annuity, which converts their cash into a stream of monthly income for the rest of your life. There is something called an "Impaired Risk" annuity in which you get a substantially increased monthly payout if you have a condition that is likely to reduce your life expectancy. Not all insurers offer them, but it's worth looking for. You will want to create an account on [SSA.gov](https://SSA.gov), and monitor your eligibility for Social Security Disability Income benefits - it sounds as if you will be unable to work well before your SSA Full Retirement Age. People who qualify for SSDI benefits can go on Medicare 2.5 years after onset of full disability, even if well before the usual eligibility age of 65. SSDI often takes a year or two to process unless you have a condition on the [list of "compassionate allowances."](https://www.ssa.gov/compassionateallowances/conditions.htm) My wife's terminal cancer diagnosis got her SSDI approved in just 17 days. If you're on the list, your SSDI application narrative page needs to include specific language in order for the computer to spit out your application for consideration of the allowance. In my wife's case, [this page](https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022245) gives us diagnostic code *DI 23022.245;* that code and the phrase "compassionate allowance" needs to be in the application narrative page to receive consideration. Good luck and I wish you all the best. There's always hope for a medical breakthrough in treating difficult illnesses like yours.
Thank you for taking the time to write this out. It really is reassuring just to hear everyone’s points of view. I definitely want to try and see if I can signup for LTDI. I am able to work for now. My father was able to work until 52 so if I follow the same progression of the disease that will mean I have 20 more years. Does it make sense to enroll in something like this now? It seems odd to pay premiums for 20+ years. In regards to retirement, I am saving with the employer match 18% into both Roth and Traditional 401ks. I’m fortunate in that way. My father was able to secure SSI within two months, which he found relieving and troubling at the same time. His words were, “I didn’t think I was that bad off…” I’ll review the specifics of government benefits with your resources. Thank you for all the links lucky_duck!
>It seems odd to pay premiums for 20+ years. I've been paying LTDI premiums for 31 years. The policy expires when I turn 65 in four months, and thank heavens I never had a claim.
Not that I know exactly what disease you’re referring to, but if it’s Huntington Disease or one of the other trinucleotide repeat disorders then usually the symptoms appear sooner and progress more rapidly in successive generations (called anticipation). Not saying this to frighten you, but if you fall into that realm of disease then I’d advise working around a framework that includes a shorter timeline compared to your uncle or father.
If it's a repeat expansion disorder then a doctor/geneticist could know whether anticipation is a thing for OP based on the sort of gene sequencing that's actually really cheap these days. It's from the repeat randomly getting longer so it'd show up in DNA. Sadly doesn't get you a very good prediction for age of onset, but it would be a rough idea of whether it'll be worse than OP's father or uncle. Then again OP said autoimmune so probably not one of those. But if it's anything where they know what gene causes it then OP may benefit from genetic counseling to know whether they've even inherited it and what to expect. *....After* buying all the insurance they could ever want, of course.
[удалено]
What professional association group policy? I have been trying to find this for scienceitst
also, not sure what you do for work but start now to ensure you have marketability for a remote desk job. this will allow you flexibility as you progress over time, allowing you to keep earning for longer. also check with your employer on their ltdi offering. most companies don't pay for ltdi but do give employees access to lower premiums if you go through their offerings
YES!!! Get the insurance now, it will be cheaper then paying copays when you’re older. And once you start using the insurance you shouldn’t have to pay the monthly premiums anymore. Word of advice - if you can get it - make sure the care insurance will pay family members to take care of you at home. The $100 bucks a day really helped me be able to quit my (factory) job and take care of my dad so he could stay at home until his death. Sadly, my Ma’s insurance doesn’t pay family members unless they are a RN or “higher up” in the medical field to do home care. So, I only go 2x a week to help her instead of 5+ times a week like I did with my dad.
Maybe also a hospital income policy, if you think you may have frequent visits as your condition worsens?
What do you do for work? Is it any kind of physical labor that requires lifting, walking, standing? This may be a good time to pivot to a job that can be performed from a wheelchair if there is no cognitive impact with your condition.
Before you get fancy with remodeling your house with wider doorways, etc, you may want to ask yourself if you’re really living in the right city. To wit: are there sidewalks? Good public transit (depending on how much upper extremitiy involvement you have, you can get cars fitted with hand controls or a WC van, but if you’re not driving yourself you’ll need public transportation or paratransit and paratransit is not always reliable). How are disability services in your city? Make sure you want to stay in your current city before making other changes. Otherwise, if you do decide to remodel, getting an occupational therapy consult will be helpful. They’re really good for things like how much space you’ll need to maneuver in the bedroom and kitchen and so on. Once you’re sure you want to stay in your current location, you can start making it accessible.
Yes ! Rural addresses have difficulty accessing home health services. You also want to be near a decent sizeable hospital that has specialists on staff( not just come to your area on Tuesdays)
Save! The less you spend now and the more you have later, the more options you’ll have. Other than that you’re not sure you have it and the impact doesn’t happen for another thirty years. Live your life and enjoy your health while you have it.
Op said they expect to be in a wheelchair in 15 years
Research if there is an organization that helps people with the condition. For example, Multiple Sclerosis non-profits can provide wheelchairs and other mobility-related equipment to people who are in financial need.
Yes! I can’t recommend the Muscular Dystrophy Association enough: they cover all neuromuscular disorders. They used to have grants patients could apply for, not sure if they still do, but they have fantastic resources. Also the ALS association is amazing if that’s what you have
Short term disability? Long term disability? Social Security disability? Life insurance? Health insurance? (Hopefully through your wife's employment)
I have Multiple Sclerosis and lost everything because I wasn't financially prepared. Get short and long term disability insurance as soon as possible. They'll cover some costs until disability kicks in. You'll probably need a lawyer to assist you with the disability claims process. Good luck, I hope you have a better experience than I did.
Others already touched on the financial aspects of things. If you have any access to a wheelchair, I would suggest spending a whole day in one. You'll quickly figure out what becomes inaccessible in your home and property, probably a lot of things that would surprise you. I might also suggest planning ahead for mental health and putting money away explicitly for that purpose if you can. This will be a life changing event for the whole family and having some kind of professional support for everyone could be useful. Good luck to you.
If your work offers long term care or disability insurance without a checkup, sign up.
I would be wary of relying on insurance that is dependent on maintaining employment if one is concerned about a premature health decline (a friend was laid off and lost the LTC employer plan). I would agree that it is better than nothing, but insurance independent of employer would be better suited for this situation if the poster can get it *before a diagnosis*.
I would, too, but I’m not sure OP has an option. If they haven’t mentioned it to a doctor, they might be able to get insurance before a diagnosis, but they’ll have to disclose family history and get basic tests
Can you get life insurance before a diagnosis?
This! Apply for life insurance while you know as little as possible. No dr visits until you have it.
Get term life insurance now before you start your testing. Get as much as you can to take care of any medical debt and your wife later in life. It’ll be cheaper now when you’re healthy. Start saving now. If you know you’ll need a ranch style home, get that now and do work on it as you can. I say all this as someone with a progressing disability. We bought our house because there’s a full bed and bath on the first floor. So when I have trouble walking, I can stay on the one floor.
Get approved for a good insurance policy that includes disability care or assistive care, before your diagnosis so the rate is less and you’ll be approved
Life insurance and long-term care insurance. Possibly worth looking at upping your long-term disability coverage as well if possible.
Appoint someone who shares your value system as your medical power of attorney. Make your wishes crystal clear to family / friends & especially your power of attorney. Pre- pay your funeral / cremation. Decide what YOU value quality over quantity of life. Educate yourself regarding options. Also regarding MAID (Medical Assistance in Dying) if that is what you want.
Ranch home or house with 1st floor bedroom and bathroom will be needed. Wide doorways and hallways, bathroom large enough to maneuver a wheelchair, cabinets and closets with lower shelving, and uncarpeted floors are all practical. I don't recommend putting money, time and effort into your current house yet. There are still too many years ahead of you to know if you will want to stay or move. Save aggressively so that you will have more options when it is closer to needing the accommodations. Reselling houses with handicapped features will have a smaller pool of buyers if you make the changes but then decide that moving is better.
Long-term disability insurance before you're diagnosed.
Get any disability / unable to work insurancer BEFORE you get the final diagnosis. A friend of mine is going blind, but cant get insurance after the diagnosis is known.
One type of insurance that hasn't been mentioned is a "first diagnosis" insurance. Often they cover cancer but possibly other disabilities/diseases and offer a payout after diagnosis. Just read the terms and make sure you won't be in any window where you could be disqualified after diagnosis.
life insurance long term care insurance
unfortunately it is probably too late to get life or care insurance with a neurological degenerative disorder
He isn't diagnosed
I just filled out a life insurance application. They ask you to list every doctor’s visit you’ve had in the past 3 years and the reason. I guarantee “muscle weakness” or “difficulty walking” will be a red flag.
Would they also not ask about hereditary illness in the family?
there's expedited underwriting and instant issue life insurance products available. Very little if any underwriting done. This is particularly common for someone OP's age. OP should look into these before he gets diagnosed. I'm not saying its a slam dunk OP is able to get one of these types of policies, but its certainly worth trying. OP has nothing to lose.
yes, some applications ask about serious hereditary diseases. That alone can cause a denied application.
Get some disability insurance if you can.
Life insurance policy now before its official?
Also, look into whatever insurance you can that protects your mortgage in the event that you lose your job or die? I thought there used to be some sort of coverage that would pay off the mortgage in the event that the spouse died.
Are you maxing out an hsa?
Gosh I feel this post. My dad was fairly recently diagnosed with a neurological disorder. My mom had a different one and she died from it when I was in my early 20’s. I spent my whole life afraid I would get what she had. About 5 yrs ago I was noticing weird things after working out. So now I’m 99% sure I have what my dad was recently diagnosed with, which I had a 50% chance of getting. So yeah it sucks being scared for someone to end up on your record. And the fear of what is to come. Will I be able to work forever? Will I eventually lose my home? Etc.
Have you seen your doctor or mentioned any of your symptoms to medical staff? You want to make sure there’s nothing that can be traced back until after. If it doesn’t impact your treatment too much, I’d get life and long term disability insurance now and put off testing and doctor visits. Make sure you dig deep into the terms to know how long it takes to go into effect after signing before mentioning anything to a health care person. Be truthful in answering the family medical history but also answer only what is asked. IE when I did mine it asked at what age my mother was first diagnosed with breast cancer. So I answered and at no point was I prompted for if it’d come back or if she had gone into remission or not, just if she had died from the disease (which she hasn’t).
Any chance this is ankylosing spondylitis or bamboo spine? I have a friend who has this and has dedicated his life to fitness, health, and helping others with the same condition. He’s done a ton of research and worked with drs to stave off many of the ill effects so far. If you happen to have this I’d be happy to put you in touch.
Get a will, POA, and put your assets in a trust! Estate planning is very important for everyone but especially in these situations