March, 2006 Interview
This month’s interview is with an amazing man, Mr. Jens Harhoff from Denmark. No I didn’t travel to Denmark to do the interview but was able to connect with Jens through email. I met Jens at the 2004 International ALS Alliance conference in Philadelphia. He is a tremendous guy with a very positive outlook on life. Jens uses a ventilator to breath and a communication device to talk. But he doesn’t let such appliances get in the way. He lives a very vibrant life.
Jens does well to communicate in English. I was going to edit his spelling and phrasing but I feel it would take away from his persona and his important message.
Chad: Jens it was so good to meet you at the conference. Please tell my readers something about yourself and your situation.
Jens: My name is Jens Harhoff, 59 year old. Happily merried to Jytte through 21 wears. I am son of a colonel, so I have lived all over Denmark. Today I live en a little beautifully situated town in the middle of Jutland. After leaving school, I became at lieutenant. I was a soldier for 4 years, and did 6 months in Cypress for the UN. After that I studied sport at the university for two years, and I educated for of couple of years as a kindergarten teacher. But I did not enjoy it very much, and I got a job as a purser on a ferryboat between Denmark and Sweden. I became a chief purser before I stopped after 4 years. I now met my wife Jytte and we have been managers on 3 camping sites. All three successfully. When you have a camping site there is not much time for other activities, but we loved to go skiing in Norway.
In 1998 I got weak, and I lost 25 kg. in a short time. It only took the doctors 4 months to set the diagnose ALS, as we call it in Denmark. I have the bulbaer type. W that time we had just accepted a job as managers on the local Youths hostel in our little town Ry. So we did not know any people at all. When I got the diagnose, I neither could nor would accept that I could not do anything to fight the disease. Here I will use my speech from Philadelphia to tell about how I fought down my disease.
When you are quite new in a town and have ALS is it difficult to get a new circle of acquaintances, but luckily my parents had toughed me to play bridge. And what you learn as a child you do not forget, so I joined the local bridge club. It was a success, and today I play both in the club and a couple of private tournaments. One of the bridge friends played petanque, and: Why not, I said to myself. So I tried to throw the ball, which I could not, but I could roll it, and today I have much pleasure in playing three times a week.
These are my hobbies today. And due to them I/we today are an active part of our little town. I got the ventilator in 2000 and the year before I got the PEG the year before. My advice: If you want to live with ALS, you have to get these two aids and appliances as soon as possible. I can tell you that before I got my respirator, I slept 3 to 4 hours every afternoon, and about 14 hours a day. After I got it, I need to sleep about 7 to 8 hours, and my carers get tired long before me. After I got the ventilator, I got new strength and I became a member of the council of the Danish foundation of muscular diseases. I became the Danish representative in the International ALS-alliance. I am a member of the board in the Danish centre for rehabilitation, and that is a hospital without beds. The councillors come to the persons with ALS. I have been flying with my respirator to both Milan in Italy and last year in Philadelphia, and I hope to go to Dublin in December.
I am the first person with ALS in Denmark, which have planned and held a course for Pals and their relatives. That was last year, and I am making a new in August. In September I have invited the 5 Nordic countries to a meeting in our holyday- and congress centre. Iceland and Finland are coming. Norway and Sweden do no participate this year. I tell you this, not to boast, but to tell you, that after I got ALS, I set new purposes for my life. I could not be a manager for camping sites, so I asked my self. To what can I use my life? And slowly I found out, that the best I could do was to help my colleges with ALS. That is very short my new life with ALS.
Chad: Tell us something about your health and fitness regimen. What do you eat, vitamins, etc.
Jens: I only eat food that is prefabricated from a factory. It is called nutrison, and it should contain everything you need. But it doe’s not. So I take what you can read about in my speech. I get all my vitamins from my vitamin bombs.
Chad: Do you attend any ALS support group meetings in Denmark?
Jens: When I was told, that I had ALS, I became very curious, and I joined every meeting held by the centre for rehabilitation. In that way I could se what I could expect of the future. It was not funny to se all the others. Some were totally paralysed, some could talk, but could not move a finger. There were all kind of ALS represented. At my first meeting I still were able to talk and eat, and a met another mew. He was very afraid and so chocked that he went home and died in 3 months. I was chocked too, but I decided to get the longest living person with ALS. So I have live quite a lot of years more.
Chad: To change the subject somewhat, what theory do you identify with as to the cause of ALS?
Jens: I have no idea why I have got ALS. But I can tell you that when we got the Youth Hostel we regretted the chance because the owner was the man we thought he was. We were unhappy with the job, and in that period the disease made me weak very fast. But why I got it I have no idea. We do not know of any other in the family but my having ALS.
Chad: Are there any drugs, compounds, or procedures you think have promise in the treatment of ALS?
Jens: Drugs. In the beginning I took two Rilutek a day.. You all know thatthat Rilutek is supposed to delay tempo of the disease. I had to stop taking them because my liver could not stand it. The physiologist wanted me to begin taking them after three months, but I did not feel that they helped me, so I stopped taking them. At that time I took mucomust to loosen the muscus/phlegm in my lungs. I also stopped taking them and felt no difference. So today I only take Atropin against dripple. Fortæl m at hærde sig selv. &. A cure fro ALS. That is a difficult question, and I am not quite sure. But we must carry on try to influence the politicians and scientist. Te scientist must start sooner to use stem cells on human beings.
Chad: What can PALS, CALS, and friends of the ALS community do to advance the cause of ALS research?
Jens: I have seen an American movie about three sisters of which one had ALS. They worked hard to advance research. I think they did a good job to influence doctors and scientists. In Denmark it is not so easy, because we are very few people with ALS, but our Danish centre for rehabilitation gives money to research, and they do a lot of research just not in stem cells. They are researching in care for us, or why we choose respirator, and how is life with ventilator.
Chad: Can you share some details with us about health care in Denmark? Also about the assistance that is available to PALS and their families. In the US many people who are disabled get very little help from the government. I understand that in Denmark public money is used to help pay for assistance and care providers for PALS.
Jens: That is at big question, which we also will take up at our Nordic seminar. But I will try to answer some of it. When you get the diagnose, the hospital and Rehabilitation centre build up an “ALS-team”. An ALS-team can consist of: A Neurologist
- A Nurse
- A doctor from the respiration centre
- An occupational therapist
- A physiotherapist
- A social worker
- A consultant from the Rehabilitation centre
- A speech therapist
- A psychologist
- A priest
And if you need other help it is possible. Every three months there will be a meeting with all the experts you might want to talk with. I personally have stopped to have these regular meetings, but when I want to have a talk with some of them, I just call to make an appointment with for instance a neurologist and a nurse.
I lost about 25 kilos in short time and the hospital offered me a PEG-tube, which I accepted at once. Nutrison food for PEG-tubes is very expensive, so I have a contribution paid by the municipality. When your breathing gets too weak you will be offered first a C-pa, then a Bi-pap and at last a respirator. Before that we are send to the respiration centre for observation several times. During these admissions the doctors take a long conversation with us about living with a respirator or die.
Most PALS need physiotherapy and that is free in Denmark. If you have to buy drugs for more than a certain amount the municipality will pay for it.
I can tell you a little story about myself. I have told you that we - Jytte and I – were managers on the local Youth Hostel, and before that we worked on a camping site. That means, we had been living in houses attached to our jobs, so we only owned at summer house. So we were suddenly without a place to live.
In that situation the municipality has to find a house suitably for a disabled person, which it denied. When you think you only have a few years to live in, you do not buy your own house. So we were in a bad situation.
We asked the consultant from the Rehabilitaion Centre, and she came and told the municipality that it was their duty to find a house for us, and today we liwe in a hose bought by the municipality. They also had to alter it so it was useably for at person I a wheelchair.
By the way the municipality also have bought my wheelchair. I cannot talk amt they also have bought my light writer. In Denmark you are not supposed to be worse of than other healthy people, and with all my activities, I do need to have a car.
I do not get a handicap car free, but the municipality pays half of the car, and they also has to pay for the conversion to me. For instance the lift. The idea is that it must not be more expensive for me to live than before I got ill.
By the way I get invalidity pension paid by the – yes guess who.
In Denmark we have what we call a handicap carer, paid by the yes again the municipality.
Chad: You are a very positive person and have done some important things in your part of the world. Please describe your latest efforts to educate and to share information.
Jens: When you get ALS the Centre for Rehabilitation invites you to at weekend course about having ALS once a year. But after 3 years I did not receive an invitation, and I and some others were very disappointed, because the being together with others in the same boat meant a lot to us.
They did not have money or time to keep on inviting us “old PALS”.
So instead of being sad or angry I made a course for all PALS. The first I made last year and the next we take place I the end of August.
In Philadelphia 2004 I met a PALS Gudjon from Iceland, and up there it is possible to get a respirator, but nobody has had one yet, because their Neurologist doe’s not recommend it. So they wanted to know what life is worth living with a respirator.
So he and I agreed to make a Nordic seminar, and from Iceland they are coming 21 persons. PALS, carers, a priest and physiotherapist and people from their organisation. The course will take place in the middle of September.
I am not a chairman in the Danish ALS organisation, but besides this, I have helped arranging evening meetings, but giving the consultants advice about speakers. I write to our Danish ALS-forum, which is at “magazine” on the internet.
I have been in a couple of towns making speeches about living with a respirator and quality of life for disabled persons. When I make speeches it goes like this. I write the words and Jytte or a carer makes the talking.
Lots of other PALS write to me just to ask questions or maybe they just feel lonely, and the writing helps very often.
Chad: When you are feeling down what do you like to do to feel better?
Jens: I cannot use to feel bitter. Perhaps in the beginning, when I thought, that I would end 100% paralysed.
When I regained some muscles in my arms and legs, I decided not to be bitter, but be happy that I can still move, still go to the toilet alone, still stir my wheelchair, hold the cards, when palying bridge, throw the ball when playing petanque. There are a lot of things I cannot do, because I cannot hold my head, but I am happy that I can do what I can.
Maybe at Christmas I get at little depressed, when the others are sitting eating their Christmas dinner. Otherwise I am a happy mann without depressions. I cannot use depressions for anything.
Chad: What do you like to do to relax and have fun?
Jens: When I relax I sit outdoors in the sun , and let the thoughte do what they want. It is important for me to get out and enjoy the sun. I get energy from the sun I have told you about my hobbies, but and am very interested in sport. I do now am then go to a handball game. I am also interested in music. Hat is all kind of music- almost. Jazz, pop and classic, I like it all. I listen to music and I go to concerts.
In 14 days we go to the north of Denmark, called Skagen to amusic festival. In a month we will go to our own concert called Green Concert. * In that we hope to earn 4 to 6 million kroners to our work against ALS.
Chad: What can you tell our readers about your experience with using a ventilator? This is a great fear of many PALS and some choose not to ventilate. How did you approach this decision mentally? What helped you to get through that period of time?
Jens: Talking about the ventilator is a big question.
In Denmark we had one person 6 to 8 years ago who had the ventilator. I did not know him, and he is dead now. I think he had it turned off. He was the first PALS in DK, who had a ventilator. But I knew number two, because he lived in my town. I became number three in >DK with the ventilator.
It was a big coincidence that we were two with ALS in a town with only 5000 inhabitants, and a bigger one that we were number two and three.I have told you that I had several conversations with my doctor in the ventilation centre. That meant that both he and I knew that I wanted to live.
On that time I still got weaker and weaker, but I was able to communicate with my Light Writer. And I was too curious to say goodbye. Life was – and still is – too wonderful to leave it.
But besides the conversations with my doctor, I had several conversations with my friend with ALS. He could talk and eat, but he could not move a finger. He told me about his life with the ventilator. That made the decision easier to me.
Before choosing you of course have long conversation with the one you love, and she did not want to loose me even though I got weaker and weaker every day.
There was no harm in doing it, I always had the right to regret the decision at turn it off.
One day in May 2000 I went out to go my training as usuall, but I had to go back. I did not get air enough, so I went to bed and put on my Bi-pap., and there I was lying when Jytte came home from work.
She called for an ambulance , and I were going to the hospital. I got better and came home again after a few days. But in 14 days I could not breathe again, and this time I got the tracheostomi.
When you get the ventilator you get heavily depended on having a carer around you 24 hours a day, so I had to get a staff of carers, and have them educated on the ventilation centre. That took about 3 weeks, and since then I have been tight marked day and night.
I DK we have a discussion about if it is recommend to have your relatives as carers. Jytte wanted very much to get one of my carers, and we knew from several years that we could work together year in and years out, so we tried it, and we are happy for it today. She is my carer number one. I think it works out best where it is the husband who has ALS.
To choose the ventilator is very difficult, and most PALS postpone the decision, and that is not a good idea, because you do not feel well in the period with too little air. You are weaker, and when you are weak it is easier for the disease to pummel (Is that the right word?) on you.
It can also be more fatal, because we have heard about people dying from pneumonia waiting for the trakeostomi, and I was miserable the two days I had to wait for the operation
Chad: Please tell us about your web site.
Jens: At the time I got ALS, I – like every body else – looked at the internet to se what there was to read about the disease.
All these websites were more or less alike. There was - like in my own – a presentation about the owner, then something about what is ALS, and maybe pictures and a chat room. I did not want to make a website like all the others. That was not necessary, there enough of them.
As you know, I wanted to fight the disease, so my website is about what you can do to have a better life with ALS. It can be, how do you keep your feet warm. It can be, what can you do against dribble. And things like that. What can you expect form your municipality.
Besides that I and one more writes about living with ALS in aa funny way. So I have an item called: Fun with ALS. I have a few articles in English. I can send them too.
Chad: Do you have any final comments or words of wisdom to leave us with?
Jens: I have often said it is not a question about having a ventilator or not. It is a question about wanting to live or die. To live with a ventilator is our smallest problem It takes guts to choose the ventilator, but it takes exactly the same not to choose it.
Chad: Thank you so much Jens. Your thoughts and ideas can be a big help to our community.
Interview - June 2005
My first interview is with Bobby. Bobby is a PALS who agreed to share his story with us. He was diagnosed with ALS in 1994.
Chad: Bobby, the first thing I would like to ask you to do is give me a few sentences about who you are and your situation. For instance one thing PALS typically are interested in when they read background info is how long has a person been dealing with ALS, what state of tune they're in, possibly what line of work they used to be involved in, what part of the country or world do they live in ...
Bobby: I am [a] 51 year old male, married with two kids. I worked in construction. I was diagnosed [in] 1994 - 39 yrs old. Beginning in 1991, I had symptoms of neck pain, weakness of hands and limbs. I was a builder so I thought it was just exertion from lifting, climbing and hard manual labor. I went to a hand doctor thinking I had carpel tunnel, which I was diagnosed with a couple of years before 1994. I was fitted with a hand brace to wear at night to help with the pain and numbness. I also experienced intense neck and leg pain. Still I thought it was coming from my work. In 1993, I decided to see a local MD for a checkup. From his examination and testing my strength, he noticed a physical difference from my left shoulder (muscle loss) than my right. He referred me to neuro. From the neuro I went for numerous MRI's, EMG's and bloodwork (still not sure of the diagnosis - but indications of motor neuron weakness). From the #1 neuro he sent me to UNC-Medical Hospital in Durham, NC. I underwent more MRI's and EMG's and bloodwork from this neuro #2. This neuro did then suspect ALS - which was a new word in our vocabularly. But neuro #1 still wanted a third opinion, so off we go to Emory Clinic in Atlanta. Again more EMG's which I was about to tell them enough was enough of those dreadful tests. From this clinic neuro #3 ask me to be in a study called BDNF. They were doing a ALS time trail study of random picked patients. I agreed to this. For two years my wife and I traveled 5 hours 1x monthly to Emory. During that time I took shots - not knowing if I was getting any kind of medicine or not. I have not been back to Emory since 1997.
Chad: Bobby, thank you for agreeing to this interview. I would like to start out by asking you what you do to pick yourself up when you're feeling down?
Bobby: First off - I try to keep myself from getting down. I have stayed positive and have good spirits. Even though diagnosed, I feel I am lucky - why you ask? I went for a checkup and my doctor asked me how I was? I told him I was lucky! He looked at me in surprise and said Lucky? I replied to him saying Yes! I am lucky; there is the fast kind of ALS and the slow kind, I feel I have the slow kind of ALS. He still was surprised at my outlook. At the time of my diagnosis my doctor ask me if I wanted to know what to come of ALS and I said no, I will take each day as it comes. I started taking Zoloft a few years ago to help with some depression and appetite. It has helped. I have been blessed with support from my family, good friends and going outside (weather permitting) everyday with my shepard - Zeus. I live in the mountains, so I do get to see a lot of wildlife and beauty.
Chad: What are your thoughts on the importance of a person's attitude and spirit as they face a disease such as this?
Bobby: I think it's very important to keep a postitive outlook even though it's difficult. I do have a bad day now and then, but who don't! I try to get myself back on track by staying busy on the computer and helping others.
Chad: Do you ever attend any ALS support group meetings in your community? If so do you feel they help?
Bobby: No I haven't. I started to at the beginning, but I decided not. My best support is my family, which my kids were young when all this happened. My wife and kids are my strongest support. I also get support from the ALS chat rooms. I have learned a lot from others just talking and emailing.
Chad: Shifting gears, what is your theory or thoughts on what causes ALS?
Bobby: I wished I knew the answer to that! So many things go through my head wondering what it could be. Is it from being around toxic building material, insectcides, exposure as a child in Flordia (mosquito spraying), mercury fillings in my teeth, trama to my body (lots of falls, kicks from horses, car wreck), exposure to lead, mercury, etc. ?
Chad: Please share with us whatever you're comfortable with about your current regimen: vitamins you might be taking, exercise, meditation, reading, etc.
Bobby: I have tried different vitamins, but I'm not a stickler on them. I did try accpunture for energy before I went into a wheelchair, also PT. I would like to take B-12 shots to see if any difference. I don't stay on any certain diet. I still drink my beer(keeps the kidneys going!!) I have faith in God to keep me going each day and lots of people who pray for me and a cure.
Chad: Are there any drugs, compounds, procedures you think have promise in the treatment of ALS?
Bobby: I read about new research and studies everyday, hoping someone comes up with an answer.
Chad: What are your thoughts on stem cells or other cutting edge research?
Bobby: I think stem cell and gene therapy in research is hopeful and holds the answers to a lot of questions about health. I strongly support this.
Chad: What do you think could or should be done regarding finding a cure for ALS?
Bobby: More research and more money to support this. ALS is out there and people need to know that it is! This disease is not talked about because we focus more on cancer, aids and heart disease. more media involvement would help.
Chad: What could be done differently on a governmental level that isn't being done now?
Bobby: Heck more support from our President and governement officials they just don't get it. We need to get real with life. I hate to feel this way, but until one of our top governement officials becomes diagnosed with this, we're going to let the time slip away from those who are waiting. We have to stand together to see this become a reality for stem cell.
Chad: What can PALS and CALS and friends of the ALS community do to advance the cause of ALS research?
Bobby: Talk about ALS, read about ALS, interview PALS in local newspaper, writing our senators and government officials, pulling together and make it known that ALS is a growing popuplation and we need to do something about it. emailing anyone and everyone every day, spam them, fill their email boxs every day. if all pals, cals did this it just might help.
Chad: It's so very easy for PALS and CALS to be overwhelmed by the shadow of this disease. What kinds of day to day things do you do to maintain as "normal" a life as possible?
Bobby: My wife still works. She gets me up and dresses me, gets my coffee at my computer, lays out snacks and I do my computer work. We still go out to eat, not as often, go to the movies, get together with friends and family on holidays. I have taught my 15 year old son how to fix things around the house, build, work on cars and how to take care of common task. I get up everyday - don't lay in bed and get going. It may be slow but I'm going!
Chad: Is there anything else you would like to share with us that hasn't been covered in our discussion?
Bobby: This disease has robbed us of so many things. I do get angry with the disease, how it affects your body. Our family has stuck together on this and we will to the end. Every 90 minutes someone is diagnosed with ALS and every 90 minutes someone dies of ALS in America. Ever since I got on the computer, people ask me why we don't have a National Registry on ALS? This is the reason I started this one and in one week's time over 120 people have signed up for across USA and other countries just from internet response. [click here to view] Imagine what the response will be when our government passes the Bill for a National Registry.
Chad: Thanks so much Bobby. Your thoughts can be very helpful to our community and to the folks who visit this site.