Questions about life insurance, long term care plans, and anticipatory planning

[limeguy]

Good morning,

I do not currently have ALS or any other neurologic diagnosis, though nearly everything else has been ruled out. I am, however a neurologic physical therapist and have a pretty good idea what my symptoms may indicate. I am not here to discuss the "do I, don't I.". I just want to know what sort of things should I be doing until a diagnosis is made. I see it as a good sign that all tests so far have been negative, but want to use this as an opportunity to prepare for the future in the instance that things do progress and I do get the diagnosis that I am fearing. That being said, I am holding off on further neurologic testing until I get my affairs in order.

My questions to you all are as follows:

1) I have an appointment with a financial advisor and insurance broker on the 25th of this month to discuss life insurance and long term care plans among other things. Is there anything specific and relevent to ALS that I should be looking for in these? How long do they typically take to take effect? As soon as they are up and going, I plan on making an appointment with the local ALS clinic.

2) I have a young son that just turned two, and my wife is 13 weeks pregnant with our next child. Is there anything that any of you wish that you could have done for your family or children when you were physically able, but didnt? I am afraid of missing something. I have sub clinical weakness and fatigue that limits my activity a little bit now, but am still mostly able to do everything that I want to/need to at the time. I am trying to spend as much time with family as possible, but don't want to forget to do anything important.

3) On voice banking... My voice is still normal, but I do have difficulty in alliterating some of the time. Should I pursue voice banking now? Is there anything that I should know about voice banking?

4) With our imminent future growth in family size, we have been planning on moving into a larger home in a better school district. We have been saving for a few years to make this a reality, and are just about ready to pull the triger, but are now wondering if this is the best thing to do. I want my kids to grow up in a better area and go to better schools, particularly if Im not going to be there to guide them through adolescence, but I don't want to make any dumb decisions either. It seems to me like we should move sooner than later while Im still able to help out with the move and setup of a new house. Any thoughts here.

I apologize for the lengthy post. I know that it is a lot to read. Please feel free to comment or not, but advice in any of the areas above would be greatly appreciated.

Hoping for the best, but preparing for the worst,
Limeguy

 

[swalker]

Here are some thoughts on your questions:

1. It is too late, except for expensive, guaranteed coverage plans with modest coverage. Even those have a waiting period.

2. I should have stopped work sooner and done some traveling we had planned to do. We especially enjoy camping, and that is becoming quite the challenge. I loved my work and had lots of incentive to continue working. I really, really miss it. In hindsight, I should have gone on disability much sooner.

3. I started voice banking with Model talker when my voice first started being affected. It took a lot of time and effort at that stage. You must record 1610 phrases, and on some days I could only record 10 before my voice started getting weak. I encourage doing this early, at least earlier than I did.

4. My neurologist recommended that I move into a more wheelchair friendly house about a year before my diagnosis. He said most folks wait until it is too late. We still have not moved I would not change that, as I absolutely love where we live (location more than the house). We will be moving this summer. It will place a heavy burden on my wife. I would not move just for kids and school, but I would move if it is necessary to ease the burden on your caregiver(s) or improve the quality of life for you and your family.

Steve

 

[anderkling]

I can understand your fears. Model Talker is easy to access online, and you don't have to pay until you actually use it. Other than that, I certainly don't know how to advise you, since you don't have a diagnosis. All I can say is that I hope you do not have ALS.
- Charlene

 

[gooseberry]

I would make sure that any life insurance you want for the family is in place.

I would make videos for your kids for the big moments in their lives or at least record a audio message. A journal of stories of your growing up years is nice too. Shutterfly offers some wonderful photobook ideas. You might consider make family ones.

If you have been a veteran, I would start checking into VA benefits. There is a ton of benefits and money available thru the federal VA and state VA systems.

If you do move, look at how it would work or could be remodeled for a wheelchair. Try to choose a one story house.

Mostly, stay hopeful and believe that with all the conditions that it could be, the chances of you being one of the 30,000 in the whole USA diagnosed this year are very slim.

 

[lgelb]

I hope you're wrong -- it would be rare in your age group, of course. If you're right:

Other house things: rooms, halls, configuration, bathroom, for lift transport and transfers, flooring, access to porch, patio, lawn, deck, garage, vehicle, transit, sources of labor for help w/ the kids (e.g. it's nice to live near or w/ access to HS, colleges in that respect), [preferably] access to shopping, services, recreation, by wheeling so you don't have to get into a vehicle to go somewhere, which gets a lot harder, esp. if you want to take an infant/toddler or two.

For you, the decision to move seems like a question of the whole package, so whether you find somewhere that works better than now for you, wife and kids in the future. All I would say re whether/when is don't totally deplete your savings on a house, since there'll be other things to buy. But you knew that.

If MT seems like a large effort, and the results I've heard didn't seem worth it to me so that is my bias, you might spend $10 on VoiceDream, check out the TTS voices that interest you and then decide re MT. The prefab TTS voices have come a long way and if my husband had lived long enough to lose his voice, he would definitely have preferred one of the ones he was using to read him books. You can still record msgs to your present and future family members.