Last month, I was writing about some therapies new and old that might be of interest to you. The body, even in the area of paralysis, is expecting movement. Some of you might be desiring to push your therapy forward, others to body maintenance. In either circumstance, providing activity to your body creates the movement your body craves.

You might be thinking, well, these therapies are great, but how do I get them? There are several options as well as things to consider. Make sure the therapy of interest is available. Stem cell therapy and nerve implants are exciting to think about. However, these therapies are not quite ready for general use. Follow the research to get an idea of what these therapies will do and what will be required of you to get them. As the research develops, a clearer picture of what will be needed appears. These therapies will not be a single shot or surgery but an ongoing process to ready your body and keep it in function.

Some legitimate companies are close to the market for implants to improve neurological function. One is the Cleveland FES Center. Follow their webpage to get more information about their research and how it is progressing. They plan to market across the country, so you will have an opportunity just about anywhere you are. There are other companies as well, all with a different approach to nerve implantation. Several researchers are working on ‘The Big Idea’ supported by the Christopher & Dana Reeve Paralysis Foundation. This research about neuro implants is moving quickly.

Other research can be followed by looking at studies on the clinical trials website. You will need to search for spinal cord injury, brain injury, stroke, or a disease-specific topic. Even though the research might not be happening close to your location, you can still use the information for your benefit.

Avoid unvalidated research. Many individuals will prey on your situation with promises for a huge cost. If a treatment is found that cures paralysis, everyone will know about it. A single person or company does not have a magic potion at this time. These individuals will charge you a huge sum, but the results will not be there. Unfortunately, some studies can omit you from future, legitimate studies because what is put into your body might be unknown or contraindicated for further improvement.

Talk with your healthcare professional to see if your body is ready for advanced therapies. There can be hidden dangers such as blood clots that can become loose in your body, misaligned bones, contractures, extreme autonomic dysreflexia, spasticity (tone), among many others. Several of you have written to me about broken bones that were not set or cared for because of paralysis. I know this situation all too well when individuals cannot participate in some therapies because of misaligned bones. You do not want to create more complications than benefits. If bones are an issue leading to complications, speak with your healthcare provider to see if there is a solution such as reconstruction. Amputation is not the solution. The bone repair can be accomplished.

Then discuss some of the advanced therapies that might be of interest to you. Your healthcare professional will have some ideas about what you can do to maintain your body or to push yourself forward. Remember that therapy maintains your body function and structure. Start with a range of motion and stretching exercises. This provides movement input to your body that it craves. You can discuss advancing your therapies as you desire.

It is difficult for everyone to start an activity program. In January, the gyms are crowded with people making new year’s resolutions, but most have long forgotten them by February. Set a plan for how you would like to advance your movement program and stick to it. If you forget for a couple of days, just start up again. Figure out how you will work your therapy into your day. Then commit to it. It might take several attempts to get into a routine.

The first attempt to obtain the therapy or equipment you need is through your healthcare payor. Many individuals do not know what is in their policy. The policy specifies what you are contracted to receive. Most policies have limited rehabilitation opportunities. Do not let this be a stopping point.

You might not have a copy of your policy. If you have Medicaid as a payor, you can look up your State’s policy online. Medicare has a national policy that is also found online. Medicare does differentiate between traditional policies and Advantage policies. They also send a current benefits booklet one time a year. Private insurance policies are a bit harder to locate as they can have hundreds of policies, so finding yours is necessary. If you have Medicaid, Medicare, or private insurance, you can call the consumer number on the back of your card to obtain a specific policy for you.

Once you have your policy, you can look up benefits. These policies are not an easy read, but you can search for them if you know you would like a standing frame. Also, look to see if you have a benefit for two weeks of therapy per year. Most payors cover this. You can use this time to try out therapies that might be new to you. Most of these two weeks’ time periods are for mobility training. Do not let that stop you. Mobility training can mean just about anything from using a wheelchair to standing to improve upper arm function. The two weeks do not need to be days in a row but can be spread out over time.

Your healthcare professional will need to request these two weeks of rehabilitation for you. They will contact the payor with justification about what therapy is requested and why it will benefit you. The healthcare professional knows how to complete these payor forms to your benefit. It is important to note that the response to the request will go to the policy owner. That could be you, your spouse or your parent. Hopefully, a copy of the response will be sent to the healthcare professional, but that is not always the case. As soon as you receive your response, let your healthcare professional know, so if something else needs to occur in a certain time frame, it can.

Once you have tried the therapy, you will need to get the equipment to continue therapy at home. This is where the real challenge begins. Often therapy equipment is not covered for purchase for home use. Your healthcare professional can write a letter of medical necessity explaining the benefits to you as an individual. Just expect the first request will be denied. The letter will, again, be sent to the owner of the policy. When you get the response, inform your healthcare provider immediately as there will be a time limit for an appeal. This process can go on back and forth for long periods.

A local man did this process for a functional electrical stimulation bicycle. The process took six years, but he ended up getting one. He then shared his story on the local news to let others know it is possible with determination. Unfortunately, I do not think the general public really got the magnitude of his success as most people do not understand the challenge. However, it is a great story of not giving up.

It is important to note that if you get a positive response for a special piece of equipment, it might not be the same as requested. Payors have contracts for reduced fees from preferred providers. You might receive equipment that was not what was exactly specified in the letter of medical necessity. It could be a different brand, but it will provide the needed therapy.

Other ways to get specialty equipment for home use include requesting help from a philanthropic organization in your community. Many organizations want to help individuals. Contacting these organizations and making a request is a good start. Your first contact might not be too promising but keep trying. You need to find someone interested in you and your story. Ask friends and neighbors who will help put you in contact with individuals who may be interested. Your place of employment or religious organization might have a fund that can help you. Keep talking to people. You never know who might be willing to help or fundraise.

Many people might start a fundraiser online. These work out well but remember the money raised is taxable, which might affect your Medicaid or Medicare benefits. There are organizations like Help Hope Live that can assist with fundraising to manage this issue. If you do fundraising, be sure to know what you are going into and how it will affect your ongoing finances.

Thinking about trying to add therapies to your routine and obtaining equipment is a significant challenge. Things are quickly changing in the rehabilitation world. Prices are lowering as the markets are becoming more competitive. Keep trying. Eventually, you will succeed. Nurse Linda

Pediatric Consideration: There are children’s services that might be able to assist you with obtaining specialized equipment for your child beyond your regular payor benefit. This can be therapy equipment or just things your child requires. Recently, a woman obtained a specialized seating cushion for her child, who was at risk for pressure injury with the standard-issue equipment. It was a challenge, but determination won success.

There are assistance programs specifically for children in each state. Be sure you know yours so you can tap into these programs when necessary. Utilize your healthcare professionals and educational resources when possible. Everyone can contribute their knowledge and expertise to make a strong case for equipment that is needed. Nurse Linda

Linda Schultz, Ph.D., CRRN, a leader and provider of rehabilitation nursing for over 30 years, and a friend of the Christopher & Dana Reeve Foundation for close to two decades. Within our online community, she writes about and answers your SCI-related healthcare questions in our Heath & Wellness discussion.