affected

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Apr 26, 2013
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Lost a loved one
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05/2013
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This diagnosis is worse than having a bucket of ice water tipped over your head.
The detail of this sticky can be summarized by these steps which are not necessarily in the same order for everyone:
1. Absorb the shock
2. Find support systems
3. Tell people as appropriate
4. Put legal affairs in order
5. Assess your living situation
6. Medical and other supports
7. Accept help, conserve energy and stay safe

Advice to Breathe! Small pep talk
If you have been diagnosed with anything other than definite ALS, you should immediately seek a second opinion from an ALS Specialist Neurologist. If you have a definite ALS diagnosis you should already be with an ALS Specialist Neurologist as they are the only ones who should be saying they are certain. You will have been through a lot of other tests and had many health issues ruled out. You are possibly strongly suspecting that ALS will be the final answer. Even so, you may be surprised at how shocked you are when the words are said to you.

When we are first diagnosed, the PALS (Person with ALS), their CALS (Carer for person with ALS) and family are in a ‘shock fog’. It’s important to realise this and allow everyone to absorb the impact of the diagnosis in their own way and time. Everyone can react so differently, from numbness, to anger, to fear and withdrawal, to denial to acting quite inappropriately.

It’s difficult to find you are trying to cope with your own reaction to the diagnosis, and then also cope with the reactions of others around you that you love. You may feel angry at them if they aren’t reacting the way you wish they would. Your own reaction and ability to get over the shock and used to the reality of this may cause you to need to separate a little from those whose reactions are not helping, and draw on those who can offer support.

It takes time to get your head and heart around it all. Your loved ones need time to do this too, so don’t feel bad if you need some space, it may be the best thing for everyone to have some space as you all adjust.

It is very common to feel a range of reactions as well such as ‘why me (us)’, a deep feeling that life is unfair. Some PALS feel quite suicidal in these early days, feeling as though they cannot face what is going to happen and would be better off ending it immediately. Some feel a need to suddenly do things they have put off or were planning to do later in life, even wanting to do extraordinary things or things they cannot really afford or are not practical. Some feel total denial, not believing it is possible and that a terrible mistake has been made. Some feel a huge fear at facing the loss of bodily functions and becoming a burden to their family. Every one of these reactions are justified, you are facing the biggest thing there is so of course you are going to have a huge internal reaction.

CALS also have a huge internal reaction to the diagnosis. They suddenly realise the enormity and seriousness of the symptoms they have been watching, sometimes for a very long time as the symptoms can come on slowly and be fairly vague in the beginning. They are faced with realising that whilst they are still the same, their loved one is going to continue declining and they are going to watch their relationship change into a role of caring for someone with high needs. For many this is one of the most frightening things they can imagine. Not everyone feels capable of caring for a seriously ill person, even if they are taught how. CALS also feel a lot of fear at the prospect of being helpless whilst watching their loved one decline. They may feel angry at having their life changed, their freedoms chained up, their dreams dissipated. Some CALS feel they cannot face this and consider leaving the situation, running away altogether. Again, every one of these reactions are justified and normal, you CALS are also facing the biggest thing there is.

Moving forward
Usually within 1 – 2 months something of that shock fog is lifting and both PALS and CALS are coming to terms with the diagnosis in their own different ways.

The good news is that the fog does lift within your own individual time frame and we do find a way through to an acceptance and begin to move into a new way of living with ALS.

Some of the strategies that can help you to move through this early fog include:

I would urge you to watch the three part series on YouTube " The ABC's of ALS".
http://thealsexpress.com/the-abcs-of-als/

For many people the time of diagnosis can have been such a shock that even if their doctor did explain things in detail, most of it did not really sink in. Some doctors truly don’t even give much detail and send you home with little real understanding of what the diagnosis even means. When you are ready, watch this series to educate yourselves a little about the disease and use it to help educate your family. This can be far easier on you all, as you don’t have to try and explain it to them, which can be difficult and emotional. They can watch this, and then you can all discuss things together with a common knowledge base.

Talk with your partner as much as you are both able. The ability to talk about this early depends partly on how well you were able to discuss serious issues previously, and how you are both reacting internally to the diagnosis. It is still better to be able to admit to each other your fears and anger at what is happening. If you can agree to be open and honest with each other now, it is going to make it easier to face each part of the disease together far easier. ALS can be an isolating disease, so you need each other more than ever.

Try not to let the diagnosis ‘take you under’. Easier said than done, but if you can try to just look at where you are at now, what you can do today and in the next week, that is far easier than looking at the whole big scary picture. Worrying too much in advance now will overwhelm. As you move through the early shock fog, you will find yourself reach a place where you want more information on how to anticipate and plan to stay on top of and ahead of your progression. That is not your first priority in the early weeks unless you have some rapid progression issues at hand that needs to be solved now.

Many people find counseling beneficial for both PALS and CALS. Most of us have no idea how to cope with this diagnosis and can find it really helps to sit and talk it all through with someone that is quite separate from the situation and is trained to help you examine your feelings.

Many PALS and CALS will begin anti-depressants at some point in the journey. If you feel that this is too much to cope with, have any suicidal thoughts you can’t quite shake, or find you feel totally drained and can’t care, these could be signs of depression that can be helped by medications. There is nothing at all wrong with taking anti-depressants. They won’t make everything right again, they won’t make you happy suddenly, but they may well allow you to keep your head above water and cope. Talk openly with your doctor about how you are feeling so you can have the right one prescribed. Be prepared that it usually takes weeks for the effects to start to be felt. There are many different families of anti-depressants, so if you have side effects you don’t like, get back to your doctor and discuss trying a different type. Don’t just give up and think that you will have to put up with feeling so bad.

If it is practical for your situation you may want to consider taking a trip or doing something that you have always wanted to do while you have the opportunity.

Support
Find support for yourself from the sources that will give you the most benefit. ALS associations often run support groups where you can meet with others in the same situation. For some people these are a fantastic type of support, but for some, particularly when newly diagnosed it can be very scary to meet others that are further progressed than you. Consider what might work or be too hard, and remember you can join a support group a bit later when you are feeling stronger in yourself.
You may have a good friend that has time to give and may become a support person by doing something with you regularly to either help you cope or to take your mind off things.
Online support like this forum is a support that can become invaluable. You can be understood by others going through the same thing. You can rant and rave in a safe place, and you can share any victories with others who will be genuinely happy with you. You can also ask so many practical questions and find yourself helping others in return with things you have found helpful for yourself.

Read through information on this site in ‘small bits’. Avoid topics that you aren’t ready for yet. They will be there to read anytime you need to come back to them.
It can be good to start with your own thread, tell your story and get to know people there a little before reading too much about others who are in more advanced stages.

You have a lot to learn, but you need first to absorb the diagnosis and realise that you are experiencing grief. You need to move through this as gently as you can, so that you get to the point of being really ready to just start learning what to expect and what you want to do in response, and how you can make the most of your life with ALS. This site is full of people who radiate amazing inspiration by the way they have embraced the changes ALS has brought in their lives and risen above the despair to live every day to its fullest.

There are ways to encourage support from those who would like to help when you don’t know how to ask for help, or have trouble accepting help. Most people actually feel better if they can do something practical so many have used websites such as
lotsahelpinghands.com

Telling people
We greatly fear having to tell our family and close friends of the diagnosis, and many fear as much having to explain their disability to anyone that asks when meeting us, even if we don’t know them.

It can be hard to imagine the pain this may cause to young children, spouse, parents or long term friends, and to have to face dealing with their reactions and grief as well.

For some PALS it is a small level of control they can have to keep the diagnosis a secret, and helps to give a little time to adjust and accept for themselves. For some CALS it is another burden they are carrying as they often want to let at least close family and friends know in the hope of receiving some support. Both parties in this have valid needs to be considered. Often a good solution is to agree on just 1 or 2 close family members or friends that can be told fairly early so that the PALS has some time before ‘everyone’ knows, and the CALS has a little support. Sometimes it may be agreed that the CALS can tell just one very close friend. Whatever the timing and sequence, the fact is that at some point you are going to have to tell people.

You may consider writing letters or doing videos for loved ones to have either now or afterwards. Some PALS find it a great comfort to put together beautiful keepsakes for their family and friends as a part of coming to terms with the diagnosis.

Telling children is undoubtedly the most difficult of situations. Here is one resource.
https://www.als.ca/about-als/resources/for-youth/

Immediate considerations
As soon as you are able, you should put your legal affairs in order. Many people with ALS live with quality of life for some years, but for many the ability to speak and write may be taken from them early in the disease. Some also experience rapid progression and your time may be filled with dealing with adjusting to new physical issues.
The sticky on anticipatory planning gives some details of the legal issues you may need to put in place or revise.
https://www.alsforums.com/forum/general-discussion-about-als-mnd/26575-anticipatory-planning-trying-stay-step-ahead.html

You will need to check your current insurance levels, and if you are a vet then you will need to contact the VA to access the assistance they offer. There is a sticky about claiming disability that will assist you and a sticky about VA benefits also if applicable.
https://www.alsforums.com/forum/general-discussion-about-als-mnd/27029-applying-social-security-disability.html
https://www.alsforums.com/forum/general-discussion-about-als-mnd/26955-guide-veterans-benefits.html

Depending on the level of progression you are experiencing at diagnosis and the type of work you are involved in, you may need to make some decisions fairly quickly on your work situation. This can be a traumatic decision to face, and many people want to pretend they are OK and presume that they can do this and work as long as possible. This sticky does not attempt to tell you what is right or wrong as this is a highly personal decision.
A PALS quickly begins to use more and more energy for the simplest of tasks and needs to conserve energy. Safety is also an issue for many types of work and may be a decision maker. If your workplace is prepared to accommodate your changing physical needs, and you are able to work in something you enjoy then you may be able to negotiate ways to continue working in a capacity that works for everyone. Some PALS continue working a long time after diagnosis, and may progressively reduce hours, be able to work from home, change their duties or use other strategies to continue.

You may want to think carefully about what will constitute quality of life for you and the many unknown factors about speed of progression with ALS and what parts of the body progression could begin to effect without warning. Some PALS prefer to retire and put their energy into doing things they have wanted to do, to travel, or to simply slow down and spend time with family and friends.

Your Living Situation
You will need to look at your living situation with a practical eye and consider getting an Occupational Therapist (OT) to come and give you advice.

You will lose mobility and if this is slow progressing will still move through stages of a walker, manual wheelchair and eventually a power wheel chair (PWC). If you progress fast in your legs you may need a PWC from very early. Whichever the case you should be looking at your house from the situation of becoming PWC dependent. The most important common things that may need consideration in this are:
1. Stairs – small amounts of stairs may be able to be ramped, but larger amounts will either be impossible or need a wheelchair stair lift.
2. Steps through doorways or at level changes – these can usually be solved easily with ramps
3. Width of doors and hallways – some doorways may be able to be widened but this isn’t always possible and a hallway that is too narrow may prevent the PWC from accessing entire areas of the house
4. Bathroom and shower – a time will come when you are unable to get into a regular shower or bathtub and will need to be showered in a roll in chair. Your shower will need to allow you the chair to be rolled in or modifications may be needed. Access to the toilet will likewise need to be available using a roll in chair.
5. Bedroom – you will be likely to need a hospital bed and electric hoist to transfer you. This may mean 2 beds in the bedroom or moving to another bedroom or other room in the house. Many PALS find that being set up in a living room or other central room in the house that is fairly large works very well. This allows the PALS to be in the centre of activity most of the time, and have plenty of room for the bulky equipment.

If these items pose a serious issue with your house you may have to consider if it is better for you to sell and move to a house that is more suitable to these needs.

Medical and other supports
Your neurologist or your ALS team will advise you on what medical supports are available and appropriate for your stage and progression. You always have the last say on what supports you wish to accept and try.
The sticky on anticipatory planning will assist you with many of these:
https://www.alsforums.com/forum/general-discussion-about-als-mnd/26575-anticipatory-planning-trying-stay-step-ahead.html

If you are diagnosed early you may wish to take part in clinical trials and should talk to your neurologist or contact ALSA immediately to see what trials may be available that you could take part in and whether they appeal to you as practical and fit what you would like to try and contribute in towards finding a cure or treatment.

There are many offers of cures online that are in other countries and expensive. Please discuss with your neurologist and be very careful, as sadly there are offers out there that are not proven to help at all and are designed to take money from the vulnerable. If it sounds too good to be true, it is!

You may wish to try natural remedies and supplements to support your body as some PALS attest to success in slowing progression or maintaining functionality or quality of life through various combinations. Beware of any claims to cure or halt progression.

Diaphragmatic Pacing System is just like a pacemaker for the diaphragm and is relatively new at the time of writing this. Studies are being conducted into its effectiveness. It is inserted surgically, so needs to be discussed early, as the phrenic nerve (which runs the diaphragm and allows you to breathe) must still be working at a certain level to qualify. Studies so far have shown that it may postpone the need for ventilation by a year or more. Because it must be implanted early you may want to discuss this immediately with your neurologist to ensure you can make a decision whilst it is available.

Recording your voice
A large percentage of PALS will lose the ability to speak clearly at some point in their progression. Using software such as modeltalker you can begin to record your voice, which can then be used for your own text to speech application if you are unable to speak later. It is important to consider starting this early if you have clear speech at this point.

Accepting help and conserving energy
These 2 important strategies for living with ALS are often the hardest for many people to accept and embrace. We often feel our independence is a defining characteristic and so accepting help can be difficult. CALS can find it just as difficult feeling they should be able to provide care for their loved one.

ALS uses an enormous amount of energy, and even early in progression PALS will admit that they feel fatigued quickly and if they push too far will pay for their efforts with days of high fatigue. Pushing muscles that are wasting and dying too far will result in causing them to waste and die even faster as the muscles are not able to recover from any trauma or deterioration.

Conserving energy and ensuring a high calorie diet have been shown to increase life span, quality of life and slow progression.

The best way to conserve energy is to accept help. Think of it this way – if you allow someone else to do some simple daily tasks that take them one hour, these tasks may have been taking you 2 – 3 hours, and all the energy you spent on those tasks can now be spent on doing things you enjoy.

The detail of what these tasks are will be different for each person. One person may prefer to allow someone else to do the washing, cleaning, or lawns. They may then be happy to spend 2 hours doing meal preparation because it brings them satisfaction. Another person may prefer to allow someone to do all the meals and they can sit do a little light gardening.

Whatever it is, allowing others (your CALS, other family, friends or hired home help) to do things that are taking your precious energy, will allow you to use energy to enjoy quality of life. If it takes you one hour to get dressed of a morning and then you are exhausted for the day, you are wasting your energy on a task that could be done for/with you in a matter of 10 minutes leaving you with both time and energy for more enjoyable things.

Staying safe
It can never be overstressed that you must avoid falls and injury. If you are refusing to use walking aids or a PWC when you need the assistance, then you are putting yourself at risk of injury. Muscles whose nerves are dying will not heal if they are injured in a fall, so you are risking permanent damage and you may increase your levels of pain permanently also. This is a real risk and it happens suddenly. Many PALS have some arm weakness and find that if they fall they cannot break the fall at all and falls become even more serious and can lead to death through head injuries.

Often it is stubbornness, pride or denial that can cause a person to refuse walking aids. Having a serious injury and hastening progress is a heavy price to pay.

Avoid sick people
You are best to warn all family and friends that if they have any contagious illness they must avoid contact with you. This is particularly important if it is any cold or flu as this can become a serious, life threatening pneumonia for you very quickly.
 
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Nikki J

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Joined
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Bumping for proper order of threads
 
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