The specialist told us that this illness is very serious and terminal! He would have 2-5 years left in his life! After we left the doctor's surgery and found our favourite peaceful place in Kings Park, Perth, Western Australia, we didn't know how to deal with this unexpected, threatening news. We cried and prayed and Wolfgang said:" Don't forget, Margit, this diagnosis came from a doctor and not from God! God can change, intervene and heal."
I still recall his conviction in his voice. After this initial time of turbulence Wolfgang went back to his office and continued conducting his training course pretending, that nothing happened. I, on the other side, went home and rang our friend and pastor Dal Hartmann (Glenbrook Baptist Church, NSW) to comfort me/us. I was so shattered, paralysed, panicky and trusted our pastor to re-establish some inner peace.
The following weeks were filled with denial, numbness, anger, confusion, shock, sadness like we never experienced before. Each one of us, our four children, Wolfgang and I, were affected in different ways and stages of grieving and dealing with our feelings, but "we" had something in common to comfort us, we had a firm belief in God or didn't we?!? How can anyone know his/her depth of faith in good times, when it is not questioned or challenged at all? But this shattering news forced us individually to check our relationship with our God, our God of love, compassion and fairness. How deep was our faith in God when tested? Three of our children wanted to go to school the "morning after", and try to switch off. Maybe the news wasn't real or would go away when not thinking about the illness. One child, the oldest, couldn't bear to go to his holiday job and tried at home to think it through and come to terms with.
In the following month and years we realised, that the impact of this terminal illness was huge and did colour a lot of decisions we made and influenced our life in general.
How could God allow this disease to destruct and destroy our family? What sin did we commit to be punished that way? Didn't we successfully repent what we knew we did wrong? Was God unforgiving? What purpose was there in life when God seemed to overwrite our expectations in life and did punish us? We felt happy and blessed just being a close knit family with our four young children, and now, instantly, everything seemed so dark, hopeless and devastating. Where could we turn to, who would know answers to our many questions?
How can I pretend that we, as a couple and family are ok when asked the polite question:" how are you"? Does anyone really want to know how I/we feel?? Wolfgang clearly focuses on things he still can do, and I seem to focus on things we can't do anymore. So we need the time, God gives to us, to establish priorities, deepen our relationship to each other and to God.
In general, we have a wonderfully constructed support net, working with us all the time. But I like to share here two different ways how some people try to comfort us and both are very useless and ineffective! One is:" I know exactly how you feel", the other is: "you can rejoice and be happy that Wolfgang meets His master". No one else but God can know how I feel and what I am going through. I am very close to Wolfgang and assume sometimes how he must feel, but I can never be accurate in predicting his emotions, mood, desires, wishes, fears or thoughts. How can anyone else think that they can!
And some Christians, who want to patch up, gloss over our grief are simply wrong when they say that we can rejoice in our situation. When a loved one is sick, everyone in this family is saddened. "Just" the fact that Wolfgang is a Christian and goes to Heaven doesn't mean, that the transition is easy. Jesus is our best example when he grieved and cried. He certainly knew where He was going but couldn't enjoy His live in the last days before He was killed.
I think, I honestly can say, that our God is our strength and that we deal with our "life sentence" the best we can. One friend and Doctor said once:" aren't we all terminally ill and have to die?"
Family, friends, carers, doctors and God provide everything we need, our relationship with Him has strengthened, and we can go on with life and feel blessed, enriched and special.
My prayers for you all is, that you pray to find God (He is not sitting in Churches only!) and He will guide you through rough times, encourages you and gives you the inner peace, we so desperately need.
My beloved husband Wolfgang died on July 21st of 2001.
If I was going to curse anthing It would be ALS its self.I do not like what it does to the persons who has it,or to the people who are around the one who has it.Sickness is hard for me to deal with anyway.I do believe that some time in the future their will be a cure for ALS. But I also believe that their will be some thing else to come along to take its place.I don't know how people that don't have GOD in their life handle the day to day happens.To me (I think) knowing I was going to a better place is the thing that would keep me going.Having ALS is like no other diease.Being told that you have ALS is like being told Strait out you are going to die.Unless a mircle from the LORD takes place.No body can say how that is ,unless they have been their.Also It is hard for the person who has Als to know how hard it is for a love one or the one who is taken care of them to stand by and not be able to take the Als a way.I know that you are Fighting a good Fight,Running a good Race,I believe you will come out a WINNER..For me John I'm kinda live one day at a time sort of a Guy,and thats the way I'm handling these from the background as Your Step Father.
I was diagnoised with ALS 10-15-99,after a year of continualy weakness in the legs and one leg was gragging at this piont. I was disabled then and the progression has continued,but fortunate in the lower part of my body,although the monster as I refer to this als condition is all through the body. Iam have been blessed with a sweeter life now that Iam home with the family my husband who has a dairy farm. It is a tough process to lose your independance as this stuff takes more everyday, but have promised to fight to the end not to let it take my joy that God has given to me. I know He has a plan for me and a purpose for each new day. I enjoy making greeting cards, painting and sewing although, all is coming to be tougher ,but until I can't will keep going. I have a walker, and scooter, which help me get around and willbe fitted for a wheelchair in October,
Yes it does get harder to do things and now have a helper to help with the cleaning and the family take over things I can no longer do.
Have been blessed with 12 grandchildren, and 14 children with mine, and my husbands children and their wives,husbands and others.
Iam a christain(which) means to me living each day to give glory to God and just rest in His care.
I have the church family, children and grandchildren to support me with many good friends and the doctor and clinic are very good to me.
My arms are experiencing much weakness, and acking now as they have started the process of losing the ability to work correctly. Falling is not a good thing and I do that a little have braces on both legs but the cooler weather make the legs like rubber and so it is harder to do things.
I viewed your web site and will return and decided if this is any help to you I would send it on and love to chat with als/pals as we need to encourage each other .This gives us more time to pray for our country,family,friends, not to say and enjoy each day to the fullest.
I am a Licensed Practical Nurse that takes care of an pals. Therefore I can not tell you much do to Patient confidentiality.
It is however, a very difficult job to take care of someone with ALS, not only due to the communication problem and having to do everything for them, but watching them go down hill in spurts is hard to take even for the trained personnel. Our hearts go out to them and we just do our best to make them as comfortable as possible and keep as cheerful as possible for their sake and ours.
I hope in the process of your disease that you become as patient and understanding of the caregiver, be it spouse, family or professional as you expect and are intitled to receive from them. My PALS is about the most patient person I have ever taken care of.
May you have a lot more good days ahead.
Bruce Keever LPN/CALS
It took me forty-some years and twenty six days to discover what Motor Neurone Disease was. (MND is what they call ALS in Australia and the UK). I stopped a passing intern at the hospital where I had been scanned and speared and sliced and diced and psychoanalysed and held innocent and ignorant captive for twenty six days. As I recall his words, his voice is now a parody of the accent of the Indian sub continent - I don't know precisely where because I never saw him again. He walked into and out of my life and in a scant few sentences left me with the legacy of ALS. I knew he was talking to me because I looked around and checked on the off chance that there had been some terrible mistake and he was talking to somebody else, insouciantly condemning them to a death too horrible to contemplate. But it was just him and me and these few words:
"What the hell are they looking for, Doctor?"
"Motor Neurone Disease".
Brief silence as he stared at my chart before I asked "What's that?"
Without looking up he repeated the textbook definition "A neurodegenerative disorder that is usually fatal. It frequently results in death from respiratory failure or related complications around two years after diagnosis". He was peering out the window and I was now looking into the jaws of hell. I think he was watching the pigeons mating on the window ledge. Life goes on
He snapped the chart shut, raised his eyebrows interrogatively and, taking my stunned silence as confirmation that he had answered all I would possibly ever need to know about ALS, terminated the conversation (an annoying disruption to his routine) and strode away. I could hear him joking with a nurse as he left the ward.
To paraphrase Hemmingway, "Its not the dying but the manner of it" ALS is an ill mannered death if ever there was one. Not that death was a problem (my personal philosophy could cope with that) but of all the illnesses in all the world I had to choose this one. Here, half a world away from Casablanca I had undergone a Kafkaesque metamorphosis from a man with a "bad back" to a condemned prisoner. Trapped inside my own life with nowhere to run.
Think about it. How often do you feel trapped in your own life? That's how I felt that day. How could such a thing be possible? How could my worst nightmare be coming true? What to do? What to do?
That was february 1994. Much has changed. Predictions of my demise were greatly exaggerated. I had a slow, limb onset (possibly atypical) form of ALS. I have since found that many forms of ALS are "possibly atypical". So many people experience the different ways in which this disease can manifest. Some, like the sharp snap of my hospital chart closing years ago, have lived their nightmare through to the end and are free of it. I stay one step ahead. The cold breath of my personal nightmare, as now in the lonely hours before dawn, chasing me from my bed to write this. But so much has happened in the following years.
The specialists had no answers. Every one of my questions merely bred more questions. I was plagued with questions, infested and clawing at them night and day. I started by writing letters to doctors, specialists and researchers around the world; anybody likely to provide a balm for the questions tearing at my mind, body and soul. Answers were few, usually brief and, often after months of waiting, incomplete, inconclusive and uninspiring. Discovering the Internet was the quantum leap that saved my sanity, such as it was by this stage.
Other people had ALS. I was not alone after all. Other people were surviving, some better than others. Some were alive, inspired and inspiring. An astonishing number were incredibly articulate, intelligent - by normal standards "over achievers" (whatever that may be). Now I was afloat in a sea of questions, answers, speculation, hypotheses and - for the first time in such a very long time - hope.
Faced with adversity of the highest order, people from Iceland and Belgium, the Ukraine and the USA, other countries that had only ever been coloured patches in an atlas - people in all these places were looking into the maw of the same monster and refusing to back down. For some it took the guiding hand of their god, for others it was new age mysticism and still others sought the sharp edge of science to cut through the endless enigma that is ALS. I fell in between the cracks.
I used to practice martial arts and even became good at them (believe me, it's nothing like the Hollywood and Hong Kong movies!). Then I took up road cycle racing - easily one of the most torturously difficult and demanding sports in the world. Forget memories of pedalling your bicycle to school. Cycle racing means that you will pedal in groups at 50km/31mph for hours at a time, you climb mountains that strain your muscles and can break your heart and mind. You descend the mountains at speeds in excess of 100km/55mph with only two square inches of rubber in contact with the road. If you fall your body, with no metal cage or leather padding to protect it, slams directly into a concrete and bitumen slab. Thus ended my cycling and sporting career. A huge truck either did not see or did not care that I was using the road too. He drove on and passed through my life as did Halley's comet in that year, 1986. I spent months in bed and a year in rehabilitation. From that day on I was disabled. My upper and lower spine was a mess and my brain had been scrambled by repeatedly bouncing it along the concrete highway. After a time I could walk again - but within limits. Pain was constant and a matter of degree and fact 24 hours a day. I learned to live with pain, take the medications and adapt. I could no longer work full time because I couldn't sit or stand or lift and carry like I used to. Eventually I could not work at all.
After several years, and by now living in near poverty, constant pain and feeling worthless - a non worker, non provider, man of memories of what I used to be and do - along came ALS. It's a bitter irony that my lifestyle by now had been pre adjusted. Housebound most of the time; friends had long since drifted away merely in the process of carrying on with their lives; wondering daily what I was contributing to the world and where my future might lie. Yes, it was depressing but, for all the horror that is ALS, it was my wake-up call. I had a new goal in life: not to die from ALS.
I've worked towards that goal ever since and have had some success through improving my liver function, taking anti oxidant and complementary medication and drinking at least ten glasses of water every day. My diet modified itself. I eat less meat derived protein and more fruit, vegetables and grains. My symptoms have diminished (but not disappeared entirely) and I now walk regularly without a stick. I sent my wheelchair back and hope never to need it again.
Spontaneous relapse? Divine intervention? The result of years of unstinting research and experimentation? Who can say? But after more than eight years since I noticed the first symptoms of ALS/MND I'm still here fighting, for myself and for those who can no longer fight for themselves. In that way ALS is both my greatest ally and most feared enemy. By stripping me of all hope when I though that had already occurred in my life, it gave me a renewed purpose. Now I have devoted myself to living and helping others like me to continue to live, if that is at all possible. One day I may succeed. I can not gauge the wisdom of my goals and actions for, as the author Frank Rooney said, "A man's wisdom is his personal work of art who's beauty can be seen only from within the man himself"
Steven Shackel, PALS