Resource Anticipatory planning - trying to stay a step ahead

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Apr 26, 2013
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ALS generally has 3 main ‘starting’ points in the body, so some of the anticipatory planning will revolve around what parts of the body are most likely, or obviously failing first.

These are – bulbar onset that starts with speech and swallowing, arm and leg onset. One of the biggest issues we have with anticipatory planning is that no one can tell in advance how quickly progression will happen or where in the body progression may move to at any time. The following is a guideline to help you look at your own individual situation.

  1. Legal and financial matters

    In every case the first thing that needs to be attended to are the legal and financial matters.

    The time just after diagnosis is a very emotional time and you may not feel that you are up to this, but it is important to get the following into place:
    • Prior to diagnosis, if possible, get life insurance and long-term care insurance.
    • Make sure your will is clear and up to date
    • Advanced health care directive also known as a Living Will.

      This document allows you to state clearly what medical interventions or treatments you want in certain situations, including a DNR order. You should talk with your doctor about this document to ensure you are clear on what different terms mean so that you fill it out according to what your wishes are.

      There is an excellent guide that will help you define your wishes under different medical circumstances in the US. It is called “Five Wishes” and is available at Every Life is Deserving of Dignity

      Do Not Resuscitate: In the U.S., cardiopulmonary resuscitation (CPR) and advanced cardiac life support (ACLS) will not be performed if a valid written "DNR" order is present. Many US states do not recognize living wills or health care proxies in the pre-hospital setting and pre-hospital personnel in those areas may be required to initiate resuscitation measures unless a specific state sponsored form is appropriately filled out and cosigned by a physician

    • Health care proxy (called Power of enduring guardianship in some countries). This document allows you to nominate someone that you trust to advocate for you with medical professionals if you either lose the intellectual ability to do so, or cannot communicate and sign for yourself. This person must only then carry out what has been signed by you in the advanced health directive.

    • Power of enduring attorney. This document allows you to nominate someone that you trust to operate your finances for you if you are unable to do so. For example if you lose the ability to sign documents, this person can do this for you. Some of these documents have slightly different names in different countries, your lawyer will be able to advise you of the correct document names for where you live.

  2. Equipment needs

    One of the most important tasks a caregiver has is to try to anticipate what will be needed before it is needed and have things in place in advance. The importance of this is to avoid crisis.

    Some examples of the kinds of equipment you need to consider early are:
    • Walking cane
    • Walker
    • Manual wheelchair - these fold up and can be put easily in a car, but aren’t good for sitting in all day.
    • Power wheelchair - these will not fold up and need a special or modified vehicle to transport out of home, but can be sat in all day
    • Hospital bed - these have a remote control to allow raising and lowering parts of the bed to assist positioning
    • Alternating air mattress - these prevent pressure area sores
    • Recliner/raiser chair - these have a remote control and allow reclining, and assist the PALS (Person with ALS) to get to a standing position.
    • High backed chair with adjustable height - these are great in the early stages as a sitting chair during the day.
    • Shower chair - great to allow you to sit in the shower to wash yourself.
    • Shower commode chair - these are on wheels and allow you to be rolled over a toilet and into a shower. This is important when walking is no longer safe and can be used for a long time as you can use a hoist to transfer on and off the chair.
    • Electric hoist - when your PALS can no longer stand to transfer, or cannot position themselves in bed easily, the hoist is invaluable. They allow you to safely transfer from any piece of equipment to another without straining either party to do so.
    • Cough assist - a device to help produce a cough and so clear the lower lungs.
    • Voice banking - this is a process of recording the persons voice so that it can be used later by technology that converts text to speech. Check with your local ALS clinic if they can help you with this.
    • Speech to text technology. There is a wide range of this technology and it is increasing all the time. iPads and iPhones have free or cheap apps available and they can be used with adaptive switches when hands become weak. Choosing some technology that will help with communication early is a great move as it is better to become familiar with using the technology before it is needed.

      When PALS leave this until they can barely speak, it is more stressful to try to adapt to new technology because they truly need it, rather than be ready to switch to it in stages. Eyegaze technology is used when there is no body movement that can run technology. It works by tracking the eyes to control what is happening on the screen. There are technology products like Tobii but most computer operating systems now have apps that can be added to use a similar technology.

      Again getting familiar with these early is far better as it is tiring on the eyes to start with and can be frustrating. So getting used to it before it is the only way to communicate means transitioning to using it and feeling more in control.

      The order in which you may need to order equipment will depend on what parts of the body are being affected first. It is perfectly OK to have this equipment at home before it is being used. Often it may take days or even weeks for some types of equipment to arrive. If your PALS simply cannot stand up one day, you don’t want to be stuck for weeks before a wheelchair arrives.

      Your ALS clinic team, your Occupational Therapist or Physiotherapist will be invaluable in helping you to choose the correct piece of equipment listed above for your individual needs. Some items come in different sizes, or with extra features, so the assistance of a professional who is not a sales person will allow you to select the best equipment.

      Sometimes however you will need equipment that will only be able to be used for a period of time, sometimes a short period of time. Your PALS may progress further and need different equipment. Example – you may start with a walking frame, and soon need a wheelchair instead.

  3. Wheelchair access check around the home

    An OT is experienced at doing a home inspection to check how accessible it is for a wheelchair, and whether any other home aids might be appropriate. Some of the things that need to be considered here are: width of all doorways and halls, steps or uneven surfaces, access from house to garage. There are often some cheap and easy options such as rubber ramps that can help overcome some issues.

  4. Bathroom needs

    You need to consider early whether your bathroom will be able to admit a shower chair on wheels. Some bathrooms are easily renovated whilst some become major tasks. An OT can assess this and give advice. Some people have successfully used portable shower bases, or even opted not to use a shower. The main thing is to look at this issue early and decide on a plan that you can put in place early.

  5. PEG

    PEG is a tube that is placed directly into the stomach, through the stomach wall to allow fluids and liquid food and medications to be given through a tube. This is vital when the PALS loses the ability to swallow safely.

    The decision to have a PEG placed is purely personal.

    It is highly recommended that if your PALS chooses to have a PEG placed, that they talk to their clinic about placing it early. It is a simple procedure. However if it is left until the person is underweight, dehydrated, has poor speech and mobility, then it becomes a higher risk procedure and also is far more stressful for everyone. The PEG can be placed before it is needed and just be flushed with water until needed. You can still eat and drink by mouth when you have a PEG in place. It is also important to have the procedure done before breathing is too compromised

  6. Help for breathing

    As the diaphragm and breathing muscles weaken, breathing becomes more difficult. There are 3 options you may consider to assist with breathing, and you should discuss them with your neurologist or pulmonologist early.

    Studies have shown that assisting the breathing processes early gives a greater quality of life, and can possibly extend life span. It is important to understand that these options will not slow down any progression in the rest of the body. You may choose to use a combination of these options.

    Note: not all countries or states have DPS available at the time of writing this, and not all countries support invasive ventilation.

    • Bipap - a machine that assists you to breath using a mask or nasal attachment. It is not an oxygen machine, but uses alternating pressure to help you to breathe in and out, decreasing how much work your muscles need to do.

    • Invasive ventilation - (often referred to as a vent) is the process when a tube is inserted into your windpipe, through the throat and a breathing machine attached.

      This breathing machine will do all the work your muscles would normally do - it will actually breathe for you. This may be the most difficult of the decisions to make and the PALS and their family should discuss this decision together with advice from the team at their ALS clinic. Some family members and even friends are happy to learn to look after a person with a ventilator but some find this very frightening. If you cannot have friends and family looking after you with a vent, then you will need to have some kind of help staff, probably nurses, attending around the clock.
When making any of these decisions you should refer to the Living Will of the PALS as this outlined what the person considers acceptable for Quality of Life.
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