Finally! After a week in a hospital and 3 weeks in-patient therapy, I was going home. Now what? The hospital got me to the point that I could walk, get dressed, take a shower, and what exercises are helpful. They showed me some “do this ” and “do not do thats”. They set me  up with an additional physical and occupational therapy, but what about living? How do I become more independent? What is involved in getting back to driving and going back to work? What are the rules? What can you expect from employers? How do I deal with jerks? It’s definitely a challenge. I hope these suggestions are helpful.

Well, one of the first things I have learned is how one poorly placed item can have serious consequences. I’ve been taken down by the most mundane items causing painful gravity tests. (falls)  I get a false sense of security when I am at home, just because of the familiarity there. It is as dangerous or even more so than out in public. I have fallen many times at home, but only twice outside of the house. Look around and try to adjust things to minimize the chance of a rapid deceleration event. (floor impact)

  • Bathroom -This is probably the room that needs the most attention. Bars in the appropriate places are essential. One of the hardest things I deal with on a regular basis is getting up after taking care of business. If you can, get a taller toilet. If you are stuck with a standard-height (like me), a raised seat might work. The ones I have tried are a bit small and don’t work well for me.  Make sure that the floor and bathtub have slip-resistant surfaces. You will need an appropriate bath or shower stool. Bath chairs have an extension outside of the tub and have six legs. Two are outside the tub to make egress easier. Shower chairs are narrower for tighter space. A toothpaste dispenser is a more sanitary option than setting the toothbrush on the counter where you just shaved, brushed your hair or applied makeup. I also recommend a soap and shampoo dispenser. If you drop your bar of soap it could be hard to retrieve. It is also helpful to have a shower brush and sponge on a stick. Reaching some parts can be difficult. Cleaning your unaffected armpit without a brush is just about impossible, not to mention… well, you know.
 
  • Living Room – The most obvious concern here would be rugs. I sometimes drag my affected foot, and to catch a rug could be disastrous. What can be worse? Face planting a glass top coffee table on your way down. Any obstruction between point A to point B is a trip hazard. Needless to say, I don’t have a coffee table. Floor lamps, cords, and decorative pieces are all possible problems. I just wish Andy would put his toys away when he is done.
  • Kitchen – I probably feel safest in the kitchen. Mine is small, so there are a lot of things to grab in the event that I should lose my balance. I have fallen there, and it hurts. I had spilled water and of course, delayed cleaning it up. The result was a beautiful multi-colored mark on my hip. What is the moral of the story? Keep your floor dry.
 
 
 
 

SOCIAL SECURITY DISABILITY

 

Applying for and receiving SSA disability benefits is a somewhat arduous task. It can take a full year to complete the process. Because the long-term effects of a stroke may not be immediately known, sometimes there is a 3 month waiting period before an evaluation is made. It took me 7 months to get to my first deposit in my bank account.

You will have to provide a lot of information documenting your condition, and you will be evaluated by a physician. The SSA will give you a list of doctors in your area to choose from and the doctor will evaluate you and send a report that substantiates (or doesn’t) your claim. This is the list of what you may need to provide. Obviously not all items will apply to every applicant.

Information About You

  • Your date and place of birth and Social Security number
  • The name, Social Security number and date of birth or age of your current spouse and any former spouse. You should also know the dates and places of marriage and dates of divorce or death (if appropriate)
  • Names and dates of birth of your minor children
  • Your bank or other financial institution’s Routing Transit Number [more info] and the account number, if you want the benefits electronically deposited

Information About Your Medical Condition

  • Name, address and phone number of someone we can contact who knows about your medical conditions and can help with your application
  • Detailed information about your medical illnesses, injuries or conditions:
    • Names, addresses, phone numbers, patient ID numbers and dates of treatment for all doctors, hospitals and clinics;
    • Names of medicines you are taking and who prescribed them; and
    • Names and dates of medical tests you have had and who sent you for them.

Information About Your Work

  • The amount of money earned last year and this year
  • The name and address of your employer(s) for this year and last year
  • A copy of your Social Security Statement
  • The beginning and ending dates of any active U.S. military service you had before 1968
  • A list of the jobs (up to 5) that you had in the 15 years before you became unable to work and the dates you worked at those jobs
  • Information about any workers’ compensation, black lung, and/or similar benefits you filed, or intend to file for. These benefits can:
    • Be temporary or permanent in nature;
    • Include annuities and lump sum payments that you received in the past;
    • Be paid by your employer or your employer’s insurance carrier, private agencies, or Federal, State or other government or public agencies; and
    • Be referred to as:
      1. Workers’ Compensation;
      2. Black Lung Benefits;
      3. Longshore and Harbor Workers’ Compensation;
      4. Civil Service (Disability) Retirement;
      5. Federal Employees’ Retirement;
      6. Federal Employees’ Compensation;
      7. State or local government disability insurance benefits; or
      8. Disability benefits from the military (This includes military retirement pensions based on disability but not Veterans’ Administration (VA) benefits.)

Then, you wait. And wait more. Eventually, you will be given a decision on whether or not your claim is approved, and if so, how much you are to receive. The amount you receive is determined by your lifetime earnings. I do not know what the exact formula is, but mine is about half of my previous income. To start the process started, click the link below.

https://www.ssa.gov/disabilityssi.gov/disabilityssi/

70% of all, (not just stroke survivors) first time claims for disability are declined. If you are denied benefits, there is an appeals process. I have seen a couple of estimated 15% of appealed applications are approved. You can request an appeal online or in person. This can take a very long time. I have heard of 2 year appeal times due to backlogs. I did not experience having to go through the appeals process, but I would probably go and meet with someone at the local SSA office for more details.

Here is the link to appeal a decision:

https://www.ssa.gov/disabilityssi/appeal.ht

Being able to work has really been good for me. Of course, the money helps. Just having a reason to get out of the house a few times a week means a lot. I do wish I could go back to my old position. Since I can’t, I do the best I can to remember how fortunate I am to be healthy enough to work at all. I always said that no job was beneath me. It turns out, I’m living that reality!

Being able to get around independently was a very important key to my returning to some semblance of normalcy. Like dealing with the SSA, it is a bit of a process.

If you want to drive again, it all started with a prescription from a doctor, and a statement saying I would be safe behind the wheel of a car. Next, you will want to then contact your health insurance company to confirm coverage. (unless you are paying for it out of your pocket) After receiving the prescription, I found a place that provides therapy. This consisted of 25 hours of driving a modified car to familiarize me with and make me safe with the pedal on the left side and driving a car with one hand.

Having right side hemiplegia means that I now have restrictions on my license requiring me to drive a vehicle that has been retrofitted with a left foot accelerator pedal, have an automatic transmission, (duh), and have power steering. The retrofit cost was about $800.

Because of these restrictions on my license, I cannot rent or lease a car. Car rental companies do not have retrofitted cars, and leases do not allow for any vehicle modifications whatsoever. For me, it was simply a gas pedal, but the level of sophistication involved in some modifications is amazing, and the costs can be very high, but the benefit could be incalculable.

I am also a believer in ride-sharing services like Uber if you don’t have the ability to drive. It is inexpensive (compared to a cab) and is easy to use. I have found that it is sometimes less expensive to be dropped at the front door than the parking fee at my destination! I have used it for a week when I was having my car repaired. (remember, I can’t rent or borrow a car).

Check with your local municipality or state government for programs that can help. I have done some digging, and virtually every major city has a program, especially for getting people to and from doctor appointments or hospitals. It would be impossible to compile a meaningful list here, but just do a Google search for disability transportation services in your ar

 

BACK TO WORK

 

I am fortunate in that I was able to return to my previous employer for work, albeit in a significantly diminished capacity, in a job that pays a lot less money. My previous position was commission based, and now I am paid hourly. I have worked there a total of 17 years as of this writing. They have made some very much appreciated accommodations for me. My position normally exclusively a full-time position, but I am allowed to work part-time. Because I have much less stamina than before my stroke, I work about 16 to 20 hours a week. Some lifting is normally associated my job, but it gets delegated to others. My position normally requires standing as well, but I am allowed the use of a chair. To make things more equitable with my associates, I work the least desirable shifts. It’s not that fulfilling, but it gets me out of the house. My part time job and disability check allow Andy and me to live on our own.

There are some very strict rules about working while on disability. The SSA has information available at the link below. I strongly suggest consulting with the SSA before returning to work. The best case scenario is, of course, to get back to work full-time at a fulfilling job without the need for financial assistance. This is really difficult, though. I have found that being paralyzed is a real turn off to potential employers. Go figure. There are state-run programs available to help with finding a job, so look in your area for opportunities there, also.

https://www.ssa.gov/work/

This brochure discusses the rules governing working while on disability. I have to say, it is not well written, and some things conflict with what my local SSA office said. Read carefully!
 

https://www.ssa.gov/pubs/EN-05-10095.pdf

Being able to work has really been good for me. Of course, the money helps. Just having a reason to get out of the house a few times a week means a lot. I do wish I could go back to my old position. Since I can’t, I do the best I can to remember how fortunate I am to be healthy enough to work at all.

 

SUMMARY

 

These are just some of the items that I found to be priorities after getting home.  Just know that this is a long and laborious process. It took me 2 full years from stroke to working part-time. Dealing with all of the insurance companies, government, (state and federal), and the medical system is hard and frustrating. DON’T LET ANYTHING STEAL YOUR JOY! Remember, happiness is a state of mind, not a given set of conditions. Don’t let a bad day today ruin tomorrow.

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