Kim Belden

Neither.  I’m just a sojourner.

Carol,

Be very careful.  PT made my pain worse even though I cautioned them on how to treat someone with ALS.  I recently went to an orthopedic for my knees.  Because of atrophy, my knees are in terrible pain.  I can still walk but they hurt so much.  I can no longer tolerate massage.  My inflammatory markers are very low but the MRI shows…[Read more]

According to Mayo, ALS can affect nerve roots and that generates a host of sensory symptoms. I was a competitive athlete and also ran 5-10 miles a day. I had a very high pain threshold, but the pain I have now is nerve pain, along with pain from weak muscles not supporting my joints. I’ve had every test imaginable looking for a co-morbidity.  …[Read more]

I’d also like to know what’s going on with Ji Wu Li.  I’m wondering if the drug companies are doing the same thing they did with medical cannabis.  They make a synthetic, less effective form, then make huge profits.

If I’d have know I’d survive this long, I would have taken my regular pension and not taken it in a lump sum.  That 2-5 years got me.

I am alone.  I have no family so I had to do all my own research and fighting with LTD company.  Fortunately, I was full-time faculty at a college so I had six months paid sick leave and they let me stay on th…[Read more]

My first symptoms were fasciculations on the bottom of my left foot.  Next, cramps in my left foot.  I just ignored them.  They went up my left leg, then jumped to the right foot.  It took about six months for me to start paying attention because I had no loss of strength.  I was diagnosed six months later.

How much pain I’m in and other PALS are in.  Not just cramps and spasticity but joint and muscle pain and weakened muscles causing ligaments and tendons to get tendonitis and tears.

I’ve always been muscular and thin and I did gain weight per my doctor’s recommendation but I’ve never been above BMI of 24 and have stayed the same weight since…[Read more]

I think it depends on the stage and how much the PALS has progressed.

When I was first diagnosed, I appreciated going out to dinners with friends and friends coming over to spend time with me.   I really didn’t get gifts from people but I would have loved certificates for massage, manicures, and pedicures and rides to doctors.  I would have lo…[Read more]

I haven’t used my PWC much since I bought it.  It’s time for service and new batteries since I will be using it more.

I called the company that sold it to me (Ability Medical Supply.). They said it would take 1-2 months to set up service and put in the new batteries.  I guess everyone needs two PWCs.  Fortunately, I can still walk and transfer so…[Read more]

I was a college professor for 25 years. I took my pension in a lump sum and “retired.” I’m busier now than when I was working. I moved, got a housemate, and found lots of new friends in my new condo. I had the remodel done before I needed it and that gives me a bit of comfort.

I’ve written textbooks but now I devote more time to recreational…[Read more]

Hi,
I also wrote a handout for my dentist.

I had to have two crowns replaced this past year. The first one was pretty hard. The one I had done last week was in front so it was easier. The dentist is also an MD and understood the challenges of ALS.

I have a few other problems (neck and Meniere’s disease) where leaning back is not good.…[Read more]

I’ve had to evacuate Florida twice for hurricanes. First one I drove myself to Orlando. Second one a friend and I drove to Atlanta. Just can say my SUV was full and that was without any ALS equipment.

I moved to a concrete and steel condo so it’ll have to be a bad one for me to go again.

I have paperwork that I’m supposed to submit to the…[Read more]