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May 2002
Life was finally on track. After 12 years of commuting from Marin County to Silicon Valley, I started working at Autodesk. A great company and a job that matches what I do well and only 11 miles from home. Looking back, I realize now how perfect my life seemed at that moment—my wife of 25 years is still my best friend and my love only grew stronger, my kids give me more joy than anyone should be entitled to, and I finally worked out the kink in my career and found a good job with a manageable commute. And, we were all healthy. Oct 2002 Better late than never. At age 48, I finally was going to do something I had always wanted to do—straighten my teeth. Autodesk provided adult orthodontic coverage, so no more excuses. A few months later, my speech started to slur and we all laughed about how the braces were impacting my speech. What else could it be? I laughed the hardest. As the year went on, my speech got worse and people were starting to joke about whether I was drunk or had had a stroke. Finally, a friend who studied speech pathology in college cautioned me that I should go have it checked as it could be indicative of other problems. I decided to make a doctor's appointment, yet in my mind the worst I could imagine is the orthodontist potentially damaged a nerve. Oct 28, 2003 The day my world changed and would never again be the same. The diagnosis came back—"ALS, and there is no cure." After receiving the news, I went back to work. I was determined to keep my life as normal as I could. It didn't take long to understand that what I really needed to do was let go of the life I knew and the dreams I had, as life would never be the same. Western medical practitioners taking away all hope, while friends and family telling me to be postive and stay strong, yet no one seemed to understand and I felt a strong need to find another person with ALS. The first person I connected with was David Ames. David lives 10 minutes away and was diagnosed in September 2002. He is in his early 40's, with a toddler and a pregnant wife, and although we still haven't met in person, he was really helpful in my recovery. He told me "It is completely normal to be depressed this soon after your diagnosis. But, trust me, soon your survival instincts will take over. I don't believe there are incurable diseases, only incurable people." That was the first of many instances that taught me that hope and knowledge about alternative treatment would occur by connecting to other PALS (Patients with ALS), and not just accepting the death sentence from doctors. Since then I have been to a nutritionist, acupuncturist, holistic lyme disease doctor, speech therapists, respiratory therapists, etc. I take a daily regimen of vitamins and supplements. I am currently taking a Chinese Herb, (thanks to David again), that in clinical trials in China, 20 out of 23 ALS patients taking the herbal cocktail showed significant improvement. I am also considering treatment in Argentina that includes a T-cell vaccine and Stem cell therapy. The fight for healing continues...stay tuned for the next update. April 2004 Since I haven't seen many of you since my diagnosis, I thought I'd give you an update on my symptoms. Currently, my symptoms are slurred speech, difficulty swallowing and shortness of breath. I also have some weakness in my right hand, which makes things like buttoning clothes difficult. Last month I started sleeping with a BIPAP machine which basically provides oxygen at night, and prevents sleep apnea. I also went to the hospital on April 8 to have a Peg (feeding tube) inserted, so I can supplement nutrition and calories through the feeding tube. May 17, 2004 I am basically not eating or drinking anything orally anymore, (other than thick liquids like milk shakes). All of my nutrition and calories come through my feeding tube, so I am connected to a feeding pump most of the day. I am still taking a Chinese herb and I am quite optimistic about it. I have received emails from other ALS patients that have had improvement after months on the herb. I have decided not to pursue the treatment in Argentina, as the results with ALS patients have not been compelling enough to justify the financial and time commitment. This week I am starting a new drug trial, produced by Novartis,a European pharmaceutical company. I will participate in the drug trial for at least 6 months. I am also scheduled to go to Texas for a "dental revision". This is a protocol, developed by Dr. Huggins who wrote the book Uninformed Consent. The procedure not only removes mercury from your mouth, but also root canals, which he believes produce cavitations which store bacteria. He also believes there is a direct correlation between illnesses and the toxins in your mouth. Since my symptoms started shortly after I had braces on my teeth, I can't rule out the possibility. I have spoken to 2 other ALS patients that had improvement after going through this procedure. I can choose the medical treatments that appear to be most promising because of your support. The dental revision alone with cost close to $10,000, the vitamins and supplements that I take monthly that are not covered by insurance are several hundred a month and the Chinese herbs are $400/month. I am also seeking out other alternative treatments and am thankful that I am able to do this because of your generosity. July 5, 2004 I am back from Texas and wanted to give you an update. My "dental revision" was done by Dr. Nunnally in Marble Falls, Texas. Dr. Nunnally was diagnosed with ALS himself and could barely walk about 1 1/2 years ago. Turns out he had mercury poisoning and as soon as he had a dental revision began to improve. Marble Falls is a small town about an hour from Austin. Kian and Gabriella came with me (along with Gab's friend, Allison). It rained alot which kept the weather cool and bearable. Dr. Nunnally and his staff were wonderful. They get patients from all over and do everything to make them feel comfortable. He even had his son take Gabriella and Allison around Marble Falls! The work is usually done in one long session and the patient is sedated. Due to my breathing difficulties, they could not sedate me so I had to go back for 5 sessions, lasting up to 6 hours each. Dr. Nunnally has the most modern equipment I've seen. He covers your mouth with a rubber dam, to make sure that no mercury gets inhaled. He not only replaces amalgams, extracts root canals (I have 2 missing teeth and look like trailer trash...), but replaces ALL of your fillings with bio-compatible material. While he works you are hooked up to Vitamin C intraveneously and at the end of the session, he has someone to give you an acupressure massage. We managed to escape to Austin for the weekend, San Antonio for a day, and see the movie "Farenheit 9-11" which I strongly recommend everyone see. Even in Bush country the theater was packed and people were crying during the film. As for benefits, I can't say I feel any different yet (Other than an occassional toothache!), but it may be gradual. Either way, I don't regret having the procedure done and recommend others do it before they get sick. We are now looking into olfactory stem cell surgery in Beijing. Who would ever guess that it would not be offered in this great country of ours (thanks to Mr. Bush) and that we would have to go to places like China for the latest treatment? July 29, 2004 http://www.freep.com/voices/sunday/estem13_20040613.htm I try to update my site www.everydaycounts.net often. I have been selected for stem cell surgery in China. Kian and I leave for Beijing on Aug. 5th and will be there 5-6 weeks. Gabriella is also coming to help for two weeks before she starts school. Imagine living in this great country of ours and (thanks to Mr Bush) having to go to China for surgery?! Well, this wouldn't even be an option for me if it weren't for all of you. Thanks to your generosity and support I will be a pioneer in this medical treatment. The above address will take you to a newspaper article with more information about the doctor and the procedure. The article focuses on spinal chord injuries, but Dr. Hongyun has also performed this on over 30 patients with ALS—all with very encouraging results. We spoke to the father of an American who had the surgery there last week - within days his son had improvement in his speech, chew, swallow, hand appearance and tongue appearance. We also spoke to the wife of a 77 year old patient, who at the time we called was outside playing tennis! How long do the benefits last? No one knows, but the patient who had this 18 months ago is still doing well. Considering Western medicine really has nothing to offer, the decision was an easy one to make. Keep the good wishes coming and thank you all for making this possible. Stay tuned for more updates... September 22, 2004 Dear friends, I have received so many emails and I am sorry that it has taken so long for me to answer. I still don't have the stamina to write and so I've asked Gabriella to help me with this. Let me update everyone on what is going on...Let's just say that China wasn't anything like what we had expected. When we got off the plane we were greeted by the nurse and taken to the hotel. The smell in the hotel "lobby" was the first taste of what was to come in the next few weeks. The air is very humid and polluted, and most places do not have western toilets, just a hole in the floor, so you can imagine what scents stay trapped. The next day I was brought to the hospital which was across the street from the hotel. The hospital was even worse than the hotel, which I didn't think possible. People flooded the hallways, coughing and spitting on the floor. The floors were always wet, and some of the windows were "repaired" with pieces of tape. The nurses and doctors don't wear any gloves when they take blood or change bandages, because they don't have any. The sheets on hospital beds are moist from the sweat of the person who was on them before. One of the worst moments was standing in the over-crowded elevator when a corpse was wheeled in only a few inches away from me...and who knows what that person died from. The hospital was filthy, but the doctors and nurses were incredibly devoted and caring, despite the lack of English skills. I went back to the hotel, and just kept asking myself what the hell I was doing. Still I decided to go through with it, because options here in America are non existent. At the hotel, the entire floor that we were on was patients of this doctor from all around the world. A couple of days later I had the surgery, which took about four hours. They injected cells into my frontal lobe and my spine from the back of my neck, and I was given general anesthesia. All was going well until the day after. The general anesthesia was a mistake due to the weakness already in my breathing muscles. I went into a respiratory attack, developed a lung infection, and pneumonia and taken to the Respiratory ICU. Kian and Gabriella were only allowed to visit me from 4-5pm, so all day and night I was surrounded by people who only spoke Chinese, and I had no idea what was going on. I also had diarhea for over four weeks. After being in the ICU for a week I was taken back to the regular floor, although things did not get much easier, as I was incredibly weak. On Sept 6th, we finally flew home. The flight was endless as I was still having breathing problems and severe diahrea. From SFO, I immediately went and checked myself into CPMC, where I immediately went to ICU and remained in the hospital for 8 days. I was so glad to hear people speak English. In total, I lost 15 pounds and became very weak, not only from losing so much weight, but also merely from lying in a bed for over a month. There were a few patients that we saw after surgery that had improvements. One lady couldn't walk at all, and after surgery she raised one of her legs in bed. So I am hoping that once I regain some of my strength that the cells might start to work for me too. As horrible as the conditions were, I do have to say that the Chinese people were of the most kind and hard-working that I have seen. This was a major setback for me and currently I am no longer able to shower or shave without assistance. I am still very weak although gaining weight and hoping to get to my pre-China self again. So please excuse me if it takes me a while to get back to anyone through e mail. But please keep writing , for I still love to hear from everyone. I will try and keep everyone posted on my progress and thank you so much for thinking of me. Harvey January 7, 2005 I received some disappointing news during the holidays. My breathing had gotten worse (I was now attached to a BIPAP machine with a mask over my face 24 hours/day) and in order to survive I would need a tracheotomy and be dependent on a ventilator (life support). My surgery was January 7, 2005. I stayed in ICU for 3 ½ weeks. I am breathing much more comfortably, although I now require nurses/caregivers 7 days/week. I still choose life and am thankful for my incredible family and friends. April 10, 2005 It’s been a few months, and I thought I would update you on how I am doing. Life on a vent is not too bad, although I get frustrated by my helplessness. My hands and legs are getting weaker—I can still walk short distances with a walker. Lately, I have fallen a few times and when I do, I am like dead weight and it is impossible for Kian to pick me up. Luckily, the few times it happened when I was alone with Kian, we had construction workers outside and Kian screamed for help and they came running. The only time I’ve felt I didn’t want to live is when I felt like a burden to my family. Although they do things lovingly, it is difficult to see the exhaustion in their eyes and know they are trapped at home because I can’t be left alone. Thanks to your generosity, I have a wonderful caregiver who is a godsend. You have literally given me the gift of life. Living on a hill has many advantages, however, due to the many stairs to the front door, I haven’t left the house since September, other than to go to the hospital. Again, thanks to your generosity and my fundraiser, we were able to have an elevator installed that takes me from the driveway to the main entrance of the house. We also have a chair lift to take me from the ground floor to the second floor. I welcome any visitors and would love to see all of you. Know that the best time to visit is early in the afternoon as I have then had time to get going with my routine. I currently communicate through a voice device so it may take me a bit longer to respond. My mind works at my regular pace, but my voice and hands have slowed. Thank you for your generosity as it has allowed me to remain in the house I love. This disease is cruel, and I don’t know how I could have survived without your kindness and support. I thank you from the bottom of my heart. As things progress for me, I am preparing myself and my family for my declining mobility. The main equipment is in place (elevator, chair lift, ventilator), but I will need more assistance in making accommodations within my home in order to make every day routines doable. Any construction expertise is much appreciated. I say this only because some of you have asked how you can help and I am trying to be mindful of things that would be helpful to my family and I, even though it is not natural or comfortable for me to ask for help. July 4, 2005 Independence Day. I lost mine almost a year ago in China. Every 6 weeks I have to have my trach changed. The last couple times the Dr. struggled to pull it out. It hurt like hell and bled like crazy. (He uses no pain killers, lubricants, or sedatives.) Apparently, the tissue shrunk around the trach, and needed to be corrected surgically. On June 22nd I had a trach revision. Apparently, it is a much more complicated procedure than a trach. They have to keep me breathing while operating inside my trach. The surgery lasted over 2 hours, but went well. I was discharged the next day. In pain, but happy to be home. On June 11th, I attended my son's graduation at UC Santa Cruz. I was a proud papa and it was a happy reminder that it is good to be alive. October 28, 2005 Today is the 2-year anniversary of my diagnosis. It still feels like a bad dream and any minute I will wake up to find I am back to my old self. How could this have happened to me? I lead a healthy lifestyle, went to the gym 6 times a week, and championed employment of people with disabilities throughout my career. How ironic is that? It is not denial. It is not anger. Just disbelief. I am still the same person inside. Sometimes I want to put a sign on the back of my wheelchair saying “This is not who I am." I am angry at the health insurance industry. They pay for doctors who are basically useless when it comes to ALS. But they won’t pay a penny for my caregivers who keep me alive and having a life. Not a day goes by that I am not aware that I have choices because of people like you. If it weren’t for the generosity of friends, family, and even a few strangers, I would be bedridden 24 hours a day instead of going to movie theaters, restaurants (I still enjoy going even though I can’t eat—sick, huh?), etc. I attended my nephew's wedding in NJ recently. It was fun, but tiring. The wedding was beautiful, saw lots of old friends, even got on the dance floor! We took 7 suitcases for 4 days! I rode my wheelchair to the plane and then they put me in a Hannibal Lecter chair. It had 10 seatbelts from head to toe. As they wheeled me down the aisle I could hear the passengers' mind, "Oh, God, please don't have him sit next to me". It all worked out well though. I recently started seeing a Tibetan doctor. He was recommended by 2 people. One was an ALS patient that had symptom reversal after being under his care. I’ll keep you posted. As many of you know, Project Hired is a non-profit dedicated to employment of people with disabilities. I have been involved with them since 1992. They have found a way to make me useful again. They just announced the launch of its new Q&A bulletin board—Ask Harvey. Check it out on www.projecthired.org. April 02, 2006 I've taken the herbs the Tibetan doctor recommended for 6 months, but no change (actually I got weaker). Not a week goes by without drama in my life. When I was 27, I was diagnosed with narrow angle glaucoma. I had laser surgery then and everything was under control...until now. Now, a century later, my left eye's pressure was up. Laser surgery didn't help this time so I went to the hospital in February for surgery. They took out my natural lens and replaced it with a thinner one in hopes that the extra room will allow the fluids to flow. The eye surgery went okay. ALS slows down the bowels, the morphine after the surgery stopped them completely. After 10 days of not going to the bathroom and being in excruciating pain I went to the emergency room and was admitted to the ICU again. The pain was 100 times worse than the surgery. I found out that the pressure is still up so the surgery was unsuccessful. They are going to try and control it with drops. The scary thing is soon I will need my eyes to communicate. Being paralyzed isn't nearly as frustrating as not being able to communicate (except when I have an itch). When I am away from my computer, I am pretty much unable to communicate. I just got a new computer system called Quick Glance 2. It allows you to look at an on screen keyboard and it types the letter you are looking at. I still need practice, but what would we do without technology? I am so lucky to have 2 wonderful caregivers. Many of you have met Chito and Dado. Sometimes I get so tired of people handling me and I long for an hour alone. But they are family to me and I really have no right to complain. August 01, 2006 When my pressure spiked in my left eye, it caused nerve damage (blind spots). In order to avoid that happening in the right eye, I underwent preventive surgery on May 24th. I actually can read without glasses! A miracle. Oddly enough, people ask me if I ever feel hungry. Let me set the record straight. I CRAVE a good cheeseburger, anything Italian, the avocado eggrolls and fried chicken salad at the Cheesecake Factory, The Sydney Café, corn fritters at the E & O Trading Company, California rolls, tomato soup at Bouchon in Napa, the Sunday brunch at Brix, did I mention anything Italian? The warm chocolate cake at the Tree Room at Sundance, and Artica Osteria Moirago outside of Milan. Now I feel full. October 28, 2006 Today is the 3rd anniversary of my diagnosis. My disease progressed quickly, but I’m still here and I’m still me. On Friday, August 25, both of my vents stopped working. We called the supplier and they couldn't get another until Saturday. My caregiver was ambu-bagging me for 3 hours. Finally I had to take an ambulance to the hospital and stay in the ICU until they could deliver a new one the next day. Most expensive hotel I ever stayed at! I hired a new caregiver. He had 6 years experience and glowing references. He quit abruptly after 4 weeks. Kian 's engagement ring, my wedding band and a stack of blank checks are missing. On September 17th, we walked 3 miles in the Walk to D’feet ALS. There was a huge turnout. Marti, my old neighbor organized it, including T shirts that said HARVEY’S HEROES! I hate my body. Not just because it doesn’t work. I once was described as “svelte." After I got my trach, my waist size went from a 31 to 36 within 4 months. Now I have breasts and I look like I’m 7 months pregnant. With that visual, I hope I still see all of you at my upcoming fundraiser, December 3, 2006. It should be great fun! June 2007 Let me apologize for not writing in a long time. Somehow the months flew by. First of all, I want to thank everyone that came to my fundraiser or sent me a donation. I hope to get pictures up soon. Kian went to England to help her brother and sister-in-law with a trade show. On Mother's day I wound up in the hospital. After 3 years of no problems with my feeding tube, it suddenly fell off. I have had it changed 3 times since then because of abdominal pain and nausea. It finally is better. At Christmas I surprised Kian with a Maltese puppy. It was a perfect gift. His name is Alfie, picture attached. In April I went with Silva to NJ for my mother's __th birthday. My brother-in-law arranged a surprise party. She was totally surprised, picture attached. |
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