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Anticipatory planning

Newly diagnosed? Anticipatory planning Great meals Breathing issues    

MND/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 onset 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. Some of the things discussed on this page will have different names in different countries.

1. 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:
a. Prior to diagnosis, if possible, get life insurance and long-term care or income protection insurance.
b. Make sure your will is clear and up to date
c. Advanced health care directive (AHCD)e also known as a Living Will in some countries.
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
* Do Not Resuscitate (DNR): Cardiopulmonary resuscitation (CPR) and advanced cardiac life support (ACLS) will not be performed if a valid written "DNR" order is present. Keep this document handy at all times in case there is an emergency and you are not at hand - keep it on the fridge, and a copy in a hospital bag you have packed ready for emergencies. Make sure any staff who assist in the home are very aware of what has been decided in the AHCD and DNR.
d. Power of enduring guardianship (called Health care proxy 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.
e. 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 solicitor will be able to advise you of the correct document names for where you live.

2. 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 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 the person 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 MND/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 left  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, weeks or even months 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 or months before a wheelchair arrives.

Your MND/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 short period of time. The person may progress further and need different equipment. Example – you may start with a cane, then 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. Some solutions may be easily created by a handy person, while others may need experts.

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. Wee successfully used a portable shower base. Some people opt 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 - 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 person loses the ability to swallow safely. 
The decision to have a PEG placed is purely personal. 
It is highly recommended that if you chose to have a PEG placed, that you talk to your 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 is far more stressful for everyone. The PEG can be placed before it is needed and just flushed with water until needed. You can still eat and drink by mouth when you have a PEG in place. 

Help for breathing.
As the diaphragm and breathing muscles weaken, breathing becomes more difficult.
You should discuss this 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. 

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 option is not available in all countries eg Australia.
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 entire family should discuss this decision together with advice from the team at their ND/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. Not everyone adjusts to the vent well either and this needs to be a consideration if you find yourself considering this. Some people spend the last couple of months of their life after the placement of a vent in a highly distressed state before either passing or requesting that the machine be removed. The latest statistics I have found report that 5 - 10% or less people with MND/ALS in the US elect to have a vent. In 2009 it was less than 1%.

Your job as a carer or close family or friend of someone with MND/ALS is to help gather as much information as possible.
Don't try to make the decision for the person, but do offer to help present them with all the information that they may need to make their own informed decisions.

However, as a carer, anticipating what this disease is going to do in taking so many physical abilities is going to improve the quality of life for you both. The AHCD will give you a lot of guidance in this planning.

When FTD is involved, this anticipatory planning is a task the carer may have to do alone as the person may refuse to engage in discussions on progression and upcoming needs. With my own husband I did most of this alone for equipment and simply organised to have equipment here. He would become angry and refuse it and I would put it away in storage. I never found us in crisis however, because when he would suddenly one day find he simply could not do something anymore, I had the necessary piece of equipment ready to use.

Carers often have to be the squeaky wheen advocate. Don't let people say they will get back to you and then not - call them, email them, call them again. Don't let someone tell you no when you suspect yes - question them and ask to go higher to talk to someone else.
No one cares about your loved one the way you do, and you only have that one person to think of, so be strong and insist on help!
This website has been designed to support CALS - people who are caring for someone with MND/ ALS.
Katrina Jeffery cared for her husband Chris through MND/ALS with FTD and provides these supports from first hand experience.
Copyright 2015. All resources that have been used or quoted provide direct links to the source.