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RE: The DIY renovate process of the garage/studio at Hidden street.

in #diy7 years ago

I know it´s also so unpredictable. MS was called the lazy syndrome in Iceland in the old days so when I don´t have much walking energy I joke about it. "Sorry I have the lazy syndrome now ;)" I was diagnosed 16 years ago (at 28) and I used to have 2 relapses per year until almost two years ago when I started to get the medicine Mabthera. No changes in brain or spine since then. But until then I had tried all the medication on the market. One of them "Tysabri" almost killed me in 2009 but I got 6 embolus in my lungs after the first injection of it. I have constant numbness from toes up to my breasts but I have my strength even though I am terribly clumsy and get tired in my feet after walking a good distance. I also have slightly double eysight but it´s amazing what you can get used to. What I hate the most is the tremor I´m dealing with. I have intentional tremor so at times I have a hard time driving a car and I get a lot of spasms in my sleep. But after experiencing blindness and getting paralised in my feet and hands at a time and constant dizziness over long periods of time and shaking like I have parkinsons I feel lucky to be still able to live in a house with a staircase to the front door. I also had a terrible fatigue for a long time but I use Low dose naltrexone (since 2011) and my energy is normal now or even better then normal beside the walking strength. The feet do not lift as they should, like my old doctor used to say; You can see from the shoes of people if they have MS. They always bump their toe in the pavement ;) Some years ago I was really thinking about getting my self a scooter but I am much better today and I force my self to take a walk with my dogs every day though now my knee problem is stopping me. But Melinda do you get any help at home as you live alone? Do you have family members or some kind of ensurance? It´s not good to be living alone falling a lot. Can you take the scooter outside or do you just use it at home?

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I am much older than you. I was diagnosed at age 46 and am now almost 63. I made the decision right from the start that I was not going to take drugs..I am more afraid of the drugs than I am of the MS. I do my best to stay healthy. I quit driving a couple years ago because I didn't have the strength to reliably hold the brakeboedsl down, and that is inconvenient because I live outside of town and I am pretty isolated. My partner died in Jsnuary, and you can't imagine how much I miss him. We did so many fun things together.
My house is perfect for me, with grab rails where I need them and a lift chair to sit in. Jim knew he wouldn't be here for me, and made sure everything is the way I would need it to be to live here on my own.. My house is all on one level with a shirt ramp to get to the back deck and another to get out to the garage and yard. My daughter stops by every morning and helps out with anything I am unable to do.I have one little 3 wheeled scooter that i use in the house and a larger 4 wheel scooter for out in the yard so that I can get the tires dirty without tracking into the house. I have a lawn care service, and someone to come shovel snow. I do hate those leg spasms.
My son lives 150 miles away in Chicago, but he usually comes once a month and spends the weekend with me, and I just got back from staying for a week at his condo in the city. A friend has invited me on a road trip in August. I'm not sure he understands how much work it is to travel with me, so we will see how that goes!
Not sure what the future holds, but just trying to enjoy each day as it comes.

My condolences on your partner Melinda. That must be a hard loss. But good you have your daughter and son around. I desided to be without MS meds after tysabri and I was doing that for 4 years. I got more and more new leasions in my brain and my doctor told me that because having that active MS I would be limping permanently in 10 years. So I tried 3 more meds untill this one. And it seems to have stoped the action ;) But many of my MS friends in Iceland have chosen not to take meds like you. Well I hope your trip in August will turn out well :D

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