September 24, 2020 at 6:41 pm #16435AmandaKeymaster
Data indicates that if you served in the military you have a higher chance of having ALS. Research and data collection continues to try and understand how environmental factors and experiences impact ALS or if it does. For our pALS and cALS who are veterans, how has the VA helped support you and provide for ALS. Did it take long to get your diagnoses? Did they have informed specialist? How does that process work?
December 31, 2021 at 10:09 am #21192Vince PajalichParticipant
At first I did not understand the correlation of ALS with military service and I was reluctant to contact them. While in the hospital a social worker insisted that my wife contact them. Before I left the hospital the VA had me staged at 100% disability and immediately started sending equipment that would be needed to remain in my house. (bed, wheel chairs, ramps, shower chairs, Trilogy, etc.) I work with the Cleveland VA and they are remarkable, I can’t say enough about them.
January 5, 2022 at 12:15 pm #21261Jim KneppParticipant
I was diagnosed with Primary Lateral Sclerosis (PLS) in February of 2009: the PLS diagnosis was confirmed by the Indiana University Medical School, Indianapolis, Indiana, and the Mayo Clinic, Rochester, Minnesota (3 visits). In January of 2012, my medical care was transferred to the Les Turner Clinic at Northwestern Hospital, Chicago, Illinois. My medical bills were paid by insurance provided by Joanne’s (my Wife) employer, and we paid the premiums and deductibles. In September of 2013, I applied to the VA for assistance with my prescriptions, and was denied because we made too much money. In December of 2013, I began the full-time use of a manual wheelchair paid for by insurance.
On April 23, 2014, my Northwestern Clinic MD changed my diagnosis to upper motor neuron, slow progression Amyotrophic Lateral Sclerosis (ALS). The Clinic Coordinator said that I would need to get a power wheelchair, but that private insurance and Medicare would only provide a new wheelchair every 5 years. Then the Clinic Coordinator said, “However, if you were a veteran” – and I stopped her and said that I was. She told us that my care would be transferred to the Veterans Administration (VA), and that the VA would contact me. Knowing that I would be dealing with the government, I expected to wait a long time to hear from the VA.
Seven days after my ALS diagnosis I was contacted by the Paralyzed Veterans of America (PVA): the PVA enrolled me in the VA, and 2 weeks later I had my 1st appointment at the Indianapolis VA ALS Clinic.
Joanne and I were both blown-away when we were told of the VA benefits during that first ALS Clinic visit – a 100% service connected disability rating; a pension; free lifetime medical care for me; medical insurance for Joanne; financial assistance to purchase a handicap van; financial assistance to modify our home; etc. The VA sometimes gets a bad rap for its medical care, but I have received nothing but excellent, compassionate care during the 7 plus years that I have been treated by the VA, first at Indianapolis, Indiana, and for the last 5 1/2 years at Gainesville, Florida – and Joanne (an operating room RN for almost 35 years [now retired]) agrees.
Little did I know when I enlisted in the USAF in January of 1967 as a 19 year old that the US Government would be responsible for a disease I would be diagnosed with 47 plus years later.
I belong to 2 ALS Support Groups and I try not to discuss my VA benefits with others in the Groups because the VA provides me medical care and benefits as a right while non-veteran pALS are not as blessed.
January 6, 2022 at 4:49 pm #21266Bob IvesParticipant
I served from 1961 to 1963 and had no expectation of ALS or VA involvement. In 2014 I was diagnosed with ALS at Northwestern Memorial and became involved with Les Turner ALS Foundation where my advocate told me of the VA support of veterans with ALS. I now am deeply involved with the VA clinic at Hines VA hospital. They conduct clinics with neurology, pulmonology, PT, speech, OT, dietary, social, & palliative specialists and provide all equipment and medications involved with pALS care. They also conduct 15-18 support group meetings a year. Their staff is excellent and very accommodating. My ALS journey would be much more difficult and expensive without the VA.
January 9, 2022 at 11:39 am #21288Gary S JonesParticipant
I was drafted on Nov 16, 1966. I arrived in Vietnam 4 July 1967 and left 4 July 1968. The first 6 months, stationed in the south side of Cholon. Only saw signs of Agent orange on roads. Late Dec, transferred to Long Binh. Base used for meals and sleep quarters. Was daily about a mile north west of base. Since I grew up on a farm in Wisconsin, wondered why, in a jungle country, that a very large area around Long Binh did not have a single blade of grass grow in the 6 months was there. In April 1968, I started to get very sick stomach wise, vomiting and diarahea through May 1968. Lost 30 pounds and was given shots to try to stop the issues. Shots so strong that we had rocket and morta attack and fellow Sgt’s did not have time to carry me to bunker. Sharpel went through Sgt area next to me and took out his music set up. After many years, figured it was the chemicals as we slept, ate, drank, walked. drove and spent nights in it in establishing night watches about 1 1/2 miles north west of base.. Honorable discharge on 15 Nov 1968 and knew was having health issues so went to both the Madison and Milwaukee VA hospitals. Even though showing the VA the rashes I was getting, Was told nothing wrong with me. I also asked for mental help and was told all in my head. Late winter, Doctor from home town told me I had acute anxiety and put me on Downers which got hooked on. Took myslef off of them when Doctor was accused of acholo and drug use. He then went to VA. I did file for anxiety with VA, but was told by VA that I was that way when I got drafted. I mean, I grew up on a farm in town of less than 3,000 people in rural western Wisconsin. Begging to think VA lying to us. I was so disgusted with VA and did not go to them again until 1980 when VA started agent orange VA doctor reviews. Minute into my review, Doctor, Retired Col and now VA doctor asked why I thought was in Chemicals. I told him about nothing growing there and he staed it was all in my mind, Did not go back to VA until March 1997 when thought having heart attack and ended up at Minneapolis VA hospital that I had servere Aginia and went on meds and assigned DR at hospital who was fantastic and saw her for 16 years when she retired. After that selected PVA as my represenative. PVA reviewed my records which the could find and saw I was ingormed I had no mental issues from being in Vietnam. PVA found that VA never sent me notice that I could appeal and PVA filed an appeal and I was granted 10 Percent disability back to Jan 1969 for not being informed but no disability for either skin or mental problems. Milwaukee VA stated no records on me being there and also told some of my records destroyed when fire at VA holdings destroying records so appear back in the early 80’s that us Vietnam war Vets were having severe medical issues. Retired in 2008 and early 2007, my writing stared to be sloppy and started losing strenght in right shoulder. My Dr of 16 years, knew something was happening medically and sent me to Nuerlogist at Minneapolis VA hospital who I saw 2 nuerologist that did EMG and other tests. After those, they put my wife and I in a room, leaving door slightly adjar. We could hear this elderly Dr. talking to young female Dr. that I was having hard faclations on back and shoulders. They stated that they would let some other Dr. what was wrong, then came into room and said nothing wrong with me. We left the hospital and went home but I was irratated what was said and called VA and asked to speak to Director of nuerology. Spoke to him on what occurred. He asked if his department could start over with a new Dr. and I said yes. Know older Dr. did not work there any more nor do I know what happened to young female Dr. Hope she got a better mentor. Over the next 6-8 months saw new Dr. several times with several EMG’s and by then started feeling legs and swallowing started getting worse. Saw the Nuerologist and he directly told me I had ALS and another part of VA would contact me. Told me I had 2-4 years to live and that was it. Of course I hit the internet researching ALS. I imaged in 6 months I would be in a wheel chair. The VA ALS team, made from Rochester MN ALS team contacted me and had ALS Dr., Pulmonary, Pyscologist, ALS RN, Dietiean, OT and PT. Saw them every 3 months and they did cintionus testing and explaining what was going to happen. Put me on a high calorie count for projection of losing weight.
PVA filed for ALS and VA granted 100% disability back to 1 Jan 2011 stating the Chemicals in Vietnam caused the ALS aloing with Heart issues including heart attack, Anemic, and just recently prostate cancer and went through Radiation treatments. Do not know the results as of now.. The big issues that I look back on was no where did I really find good information on ALS. I did sign up for the National ALS registry and found this forums. The news letter was great in stating more veterans was getting ALS than non veterans and then another article from the registry stating that findings that 40 % of us Vets were living a life span of 16.4 years compare to average 2-4.
ALS caused us to move from Wisconsin to Florida as I could not do anything durning winter up there. I am what is called slow progressive ALS and at least I can go out on our Lanai and enjoy the weather. The last couple years, I can do less and less. I used to be very active and after retirement, would be outside doing things, think this benifited me and was very active bow hunter which had to give up end of 2012 as lost strenght and very, very shakey which is worse now and really can not do any garden work or walk less than 50-60 feet with rollator and have to stop and rest.
Have I been optimistic on ALS. In the begging, absolutely no due to lack of information. After I was not dead after 2-3 years, I stopped worrying about it and I still do not. Just taking one day at a time and enjoying the weather!
I am open to any questions. FYI. Only my wife and grandson were told I have ALS and it was not until 5-6 years after told that I finally told family and friends. Why? Just did not want to bother them as friends my age and they have there own issues but I did and now have some support.
I am sorry that is so long but just trying to remember what has happened. Oh, the VA this last fall gave me a 100% disability for PTSD and for Cancer but does not mean much now as it does not add anything to disability.
God Bless all that has been hit with ALS. Believe most cruel thing that can happen to us,
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