@Doug_Graham 

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Doug_Graham

A POSITIVE LIFE CHANGE

I’ve been working on this for several months, but I’ve been a bit overwhelmed with the changes in my life and I haven’t had a lot of time to sit down and think about what was happening with my MS and life, much less write it down. I’ve been living with RRMS since the mid-90s. I used to have exasperations that would shut me down for 7 – 10 days and then disappear. I had to retire because my MS limited the amount of time I was able to work. The fatigue continued to get worse until I could hardly stay awake. After falling asleep driving, I made the decision to retire. My neurologist and medical team have told me that I have progressed from RRMS to SPMS. I don’t know what the criteria are for this change. They said I didn’t have any active lesions or inflammation and took me off of my current DMT. Seems like they thought that at my age, I would be better off dealing with MS than the side effects. I started on steroids before there were any treatments for MS, then went to Rebif, Tysabri infusions for 8 years, Copaxone, Tecfidera, and then finally a few years of Rituximab. In the past, I thought about getting off the DMTs to see how I would handle it. But when it happened, I was scared, so I decided I would lose weight and start exercising within the limitations of my MS. I weighed about 240 pounds but always enjoyed working out when I served my 20 years in the US Navy. I was an avid runner and MS took that from me. I tried Pilates which is low impact and didn’t heat me up. Now I work out almost every day. In the beginning I could have made money on America’s funniest videos trying to get on and off the equipment or into the right exercise positions. Now, I have completed 226 classes since I started a year ago. I do feel better and I’m walking without my cane. I still use the Bioness knee for my drop foot. We are also still on our Keto diet. Turns out, Keto is an anti-inflammatory so in addition to losing ~ 65 pounds, I am in less pain. The most noticeable was the arthritis in my hands. I used to enjoy playing guitar but over the years my knuckles would get inflamed it and it hurt to move. I started playing guitar again when we lost our power during the notorious freeze in Texas last year. We went several days without electricity, which meant no lights, stove, microwave and heat!! Everything was closed and you couldn’t get groceries or other supplies, even if we were willing to risk driving. My wife suggested playing guitar like I used to before we had the ability to stream entertainment. I was rusty but amazingly, my arthritis didn’t bother me. The Pilates improved my core strength and after a few months I started forgetting my cane in the studio when I got ready to leave. I stopped parking in the handicapped space by the door and began leaving the cane in my car. I’d like to say that diet and exercise worked perfectly but we all know that nothing can make MS go away. I guess I was heating up my CNS and started getting uncontrollable cold chills and fever. Of course, I panicked thinking it was COVID. When the test was negative, I figured it was MS since that is usually the case with unexplained symptoms. My son, Jordan, and I went on a fishing trip. I promised him we would go to Alaska to fish for his High School graduation. He graduated in 2019, but he had to have shoulder surgery from playing football so I knew there was no way he could physically handle it. Then there was COVID. We finally got to go, and it was great. We were able to spend some father-son time without worrying about his grades, his Eagle Scout qualifications, football or his youth group activities. He was surprised how well I was doing since he doesn’t remember a time when I didn’t use a cane. We brought home 135 pounds of Halibut, Salmon, and Sea Bass filets. I no longer have exacerbations like the days of RRMS, but I have some issues with my eyesight, balance, and bladder, that don’t recover like they used to. But I am getting used to having consistent disabilities unlike the exasperation of the day I was diagnosed 30 years ago. adjust to is not being as disabled as I was for > 30 years. For years people didn’t understand what MS was and how it affected me. Now that people know about MS, they are surprised I have it, considering the physical shape I’m in. Last month I joined a fitness center to add weightlifting and some very limited cardio to my routine Unfortunately, some of the people I have been paired with who were dealing with more serious issues didn’t find my successes to be supportive, so I have been hesitant to post anything on the site about my accomplishments. My intention was to share the idea that I got tired of giving up on myself and began trying to do better for myself each day. I hope to express that a more positive outlook is beneficial even if exercise isn't possible for everyone. I’m over 60 and have spent almost half of my life limited by MS. Now I am taking control and feel I was selected as to be a buddy a couple of years ago. I’ve had the pleasure of emailing those dealing with MS. I hope my lengthy post can help someone dealing with MS. I wish that I had started taking better care of my self years ago. It hasn’t been easy loosing weight and getting in shape. But, not trying and giving up on myself was a lot harder.
@HappyHen

@Doug_Graham, you have grit. To say Well Done seems a tad lame. Like you say we are all different, managing a wide range of challenges. But this post is full of inspiration. Go for it!

@SIMONA2

Hi it was great reading your message,I have always enjoy walking but since my mobility as got much worse I wasn't moving around so much, my bodyfelt like it was locking up I was getting so much pain but over a month ago I started doing yoga/Pilates for an hour every day it was so hard at first lots swearing and groans! but I now walk so much better and don't feel unstable and don't have as much pain, I think exercise and diet make such a difference in ms its hard work every day but worth it