Jim Conner
Forum Replies Created
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I started taking it Three weeks ago and I’m starting two a day today. The only problem I’ve had is shortness of breath which is due to the allergy part. We may stop for a week and see if my shortness of breath goes away if it doesn’t than it is due to the progression of the disease. We got financial assistance on payment of the medication that was $1090 a month. We would not use it if it wasn’t for that financial help
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Very little exercise any more. Stretching int he morning is about all.
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I have taken Riluzole until it upset my stomach and I am on a break from it. Haven’t noticed any difference, the disease keeps progressing. Where I lived I could not take Radicava unless I traveled a bunch and since the jury is out on its effect, I passed.
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NOPE. I got the original shots a year ago, had Covid year and a half ago. I may have had it since, who knows. Call it voodoo or whatever, my wife got an auto immune disease soon after she got the shot with me. A number of people on a Mayo Clinic site stated the same. Gonna live with it as we do with other contagious diseases.
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I have looked at a number of trials, however I am inMontana and the travel is a headache. I have also found out because I am 18 months past being diagnosed makes me ineligible for all the trials I have looked at.
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Had covid, kicked its ass. Got the shots and I don’t do anything else. How can a disease that has a very small chance of hurting me, be scarier or more threatening than one that is 100% gonna kill me? I will not live my life in fear or cowering. The days I have left will NOT be spent shrinking from life.
Lions not sheep.
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No joke- have to cut my beer intake to………………hardly ever. Seems the alcohol hits me faster and harder than ever. I’m a cheap date.
All I have added is a whey protein powder to my fruit smoothie in the morning. I have always eaten healthy and I just continued it.
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Just like all of us are different and our ALS is different, so goes our clinics.
Mine is every 3 months, it was yesterday. I have an orthopedic recovery doctor, nutritionist, occupational therapist, physical therapist, speech pathologist, respirtory therapist, a nurse social worker ( that is also a rancher and we have great visits) and my neurologist ( its like a clown car). We always seem to have a resident or some other student come in. This last time a resident OT from No. Dak. came in and stayed with us the whole time. She was a riot.
It is getting somewhat repetitive, however my disease is progressing slowly, I guess. It is good to be seen and go over the help we need. I just got onto a Be pap and it was good for all of us to get a shakedown on it. The OT came to our new house and gave some input in improvements.
Plus some other issues get covered that I would have to make an appointment and wait forever to get in. This is easier.
I got very receptive, helpful folks. That really helps.
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I was told by my nutritionist to add a protein powder to my smoothie in the morning to help keep my weight up, I have lost 20 lbs. in 2 years. I use Hammer Nutrition Whey Protein Powder. Tasty stuff. My grand daughter plays HS volleyball and takes it after practice and games.
I live with 4 very good cooks so I eat good balanced meals with a lot of smoked meats. I just don’t eat as much per meal as I used to. More smaller meals.
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Thank you.
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Go to Calgary Flames website and check out Chris Snow and his story. He underwent stem cell treatments in Canada. As I remember he was good for awhile but the symptoms came back. He is currently undergoing treatments in Toronto. His is a familial ALS.
Its a sad, but learning family story.
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I was diagnosed with ALS in late Oct. 2019. I went to Mayos in March 2020. The first day they thought I had Kennedys. They did a couple of genetic tests, spinal tap, a blood test and sent me back home. Got a call a few days later that I had ALS cause the tests were negative. They were fooled too.
The funny thing was a few medical folks did not believe I had ALS. There had not been a case in my former small town for over 30 years. None of the doctors there had ever had an ALS patient, even the older doctors. My chiropractor is the one that suspected first and sent me on journey, crappy as it has been. I always thank him.
LIONS NOT SHEEP
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I had it in mid Dec., last year. Got up with splitting headache, nausea and feeling like I was run over by a small car, worse than any hangover! It was a Sunday therefore the ER was the place. They gave me a bag of fluids, a shot for the nausea, a short nap and I was gone. (My old Lab was sick the day before and had bag of fluids and a shot too!) I felt better in a couple of hours and was quarantined for a few days, got released on my birthday.
Now there are 16 folks in our extended family, only one other person has knowingly gotten the bug. No one else. We have never gone hard on masking or social distancing. We have all been exposed and only 5 of the 8 adults have gotten the shot. My wife and I got it in April and May. The second shot had more side effects than the bug! No more shots for me.
Personally I am not scared of covid. Â I come from a medical family and SINCE the chances of dying from Covid are 100 TIMES less than the crap we all have. I am NOT DAMM WELL spending my last few months and years hold up and losing out on my last chance to LIVE LIFE.
The outrageous hysteria on Covid makes my blood boil. It has become political and made things worse. I am a man of science and this is loads of bilge.
I will get off my soapbox.
LIONS NOT SHEEP!
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Lordy when I read Ketamine for ALS my spine shivered. I used Ketamine with Rompin (sic) to tranquilize bears. We tried it on elk and moose and probably killed the critters the day after we released them due to spiking blood pressure. Keep that crap as far away from me as possible. Yuck.
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Amanda my thoughts are with you. It is all too familiar that patients are waiting 18 months to 2 years or more for an accurate diagnosis. The stress from this, as any disease diagnosis, is extreme. Unfortunately the medical systems we have now in most countries are so wound up in insurance, lawsuits etc., that physicians of all stripes have a long road to walks to get an accurate diagnosis no matter what. Also in your case there is the extra step of the genetic cause with again different medications, symptoms and genetic markers. Progress is being made, but for us in the trenches with our caregivers, family and friends it is a frightening future.
I made some extra cash responding to a survey from University of Washington awhile back. I did not need the cash so I looked to donate it  somewhere. A couple of places never responded. I read an article about the Un. of Miami work with ALS. They got back to me quickly and although I hate their sports teams, I sent them the money, a transcontinental money transfer. I got a super nice thank you. I just feel like I helped a little bit and would it not be cool that it helped you and others at U of M dealing with ALS!
Be Lions Not Sheep
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To see some Lou Gehrig Day videos got to Marquee Sports website. It is the group that telecasts Chicago Cubs games. They have a number of videos and interviews with people that have ALS or are helping people with ALS. One announcer partnered with a childhood friend that has ALS to start Project Main St. to help folks pay for needed expenses. Another is a player whose father has ALS. Also interview with ALS victims and families.
Thru those videos I found another site called “I am ALS” that is raising funds etc.
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Perfect title to this thread. FINALLY. We need publicity, as I have said in prior posts. I know damm few people that knew about Lou Gehrig Day or what it is about. Being from Chicago area I checked the 2 big papers online stories, NOTHING. I have sent them emails stating my dismay. I saw photos on MLB website of a few places that had ALS ceremonies, including Cubs Park , yet no mention in the papers. There is a nice article on a fund raiser for Steve McMichael the former Bear, that teammates are putting on. The Bears supplied him with a state of the art wheelchair too.
So will this day really work? I don’t know. I do now that other places, U of Michigan  and the Calgary Flames for example, are involved locally because a former hockey player and an executive got ALS. Like was stated in another thread, local work is going on, however a national push is needed.  Sports is a big way to get the word out, but the effort has to be there.
I do thank them for what they have done, don’t misunderstand me, however sports leagues have pushed other issues a lot harder and been successful in generating interest and fundraising.
Good discussion as usual.
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Good discussion. I used McMichael and Fox because of their celebrity status as an example. It is a shame that any spokesman only has a short period of time to be active, like Pat Quinn and the Ice Bucket Challenge. The other Jim has a good idea to recruit a young person to speak out.
MLB has Lou Gehrig Day coming up in 10 days and you have to dig into MLB.com to find information, doggone few people I know have even heard of Lou Gehrig Day. It has some good stuff, but like many things ALS is behind a number of other issues, not out in front on the website. Â I hope MLB brings out local folks that have the disease and show it front and center and the national networks do some advertising.
I thank Bionews for this site and what they do for us, however it is usually the troops and their support people that get the ground work done. I am on MEWE and I am going to try and set up an ALS site there, if there is one I cant find it. Gotta get the word out any way we can.
I learned of a U of Michigan hockey player that had ALS on MEWE and passed away 2 years ago. A foundation has been set up, but is little known outside of Ann Arbor. A list of these organizations would help.
Lets keep throwing thoughts out there.
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I believe we need a celebrity that is outspoken and willing to do the work. Parkinsons has Michael J Fox. I know a couple of folks with Parkinsons and the medical advances that has given them back their freedom is amazing. I believe because Fox went onto shows and is an advocate the disease was given more publicity. I don’t want anyone to get ALS, but that is what I think is missing. Recently I put out a post about Steve McMichael of the Bears that was recently diagnosed with ALS. I reached out to his folks to see if he would get active, I have not heard back. Did you know June 2 is Lou Gehrig Day in MLB? It has not been publicized very much. Very few people seem to know. If McMichael went to either Sox Park or Cubs Field that day, WOW would ALS get a kick. Alas no answer so far. There is an Assistant GM for the Calgary Flames named Chris Snow that has ALS. His wife has a grieving post and they do other local things, but again no real national thing. Lastly, look at how few people are on this site. They started a site where I go to see my doctor and all but 2 people on the site are my family members. There at least a dozen of us coming into this doctor.
Hope this helps.
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Gabbies? I tried it for 1 year for pain before my ALs diagnosis. Did nothing at all. My neurologist took me off when I was diagnosed. My daughter is an Addiction Counselor. She told me Gabbies are used in combination with certain drugs to accelerate the “high”. Â Keep them away from prying eyes.
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What you paying for the lbudilast and did your doctor advise you one the drug?
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Interesting. That Mayos in Minn. or Ari.? The only contact I get from them is for donations.