[Kim Belden]

I would absolutely require a caregiver to have Covid vaccines up-do-date. I would also require them to inform me if they had a family member sick.

I’m fully vaccinated. I lost a brother in the VA nursing home to Covid because some of the staff were not vaccinated and they passed it to residents. Four died.

[Kim Belden]

Dealing with the pain. I also have Ehlers Danlos and that makes everything hurt.
Mentally, it’s living on the ocean and golf course and not being able to go in or play golf.

I was an avid runner, golfer, surfer, biker before this hit. I can’t even do yoga because of the pain.

I can still walk around the condo but have to use the wheelchair even to get to the pool.

[Kim Belden]

I find exercising in a very warm pool helps me more than anything. I have severe pain from another condition so walking is out of the question. It’s also very nice to get out in the sun. At night I do gentle stretches and meditate.

[Kim Belden]

Hi James,

I know many PALS who use NIV and are on hospice. I would have my caregiver call your local chapter or your care team (neurologist or clinic). They may be able to help find a hospice that understands.

[Kim Belden]

I got my second booster in October 2022.  I’ll be getting another one next month so I’m safe for the holidays.

I’ve never had the flu.  I’m 68.  I got my first flu shot last January.  I’ll get another one about a month after my Covid booster.

My brother died of Covid in June.  He hadn’t been boosted in 18 months.  He was in a VA nursing home and four on his wing died.  His wife got Covid from a friend.  She is 81 and Covid caused her to develop congestive heart failure.  She is under the care of a cardiologist and he advised her to get this next booster.  She already got the RSV and flu shot.

[Kim Belden]

Hi Dagmar,

As I’ve progressed, I’ve noticed changes in my sleep patterns.

Very early, I was still working and didn’t notice any difference.  I was always early to bed and early to rise.  I could still maintain a fair amount of activity.  My runs turned into walks but I still swam and did many activities.

About a year in I started getting lower back pain.  I was able to break the pain cycle with about three months of opioids.  During that time I needed more sleep but could still fall asleep.

A year later I fell (doing something stupid) and sprained my ankle.  I had just put in an offer for a new condo on the beach and had not yet sold my home.  Then a hurricane forced me to evacuate.  All this time I should not have been putting weight on my ankle but I did just to push through.  As a result, my ankle was very painful and the gait threw out my back again.

From that point on I needed to take muscle relaxants along with an antidepressant, both of which helped with sleep.  Both injuries seemed to recover but I still had minor pain in both areas.  In 2018 my right knee contracted and I went to PT.  That pain is still with me although I can now straighten it out.

Since 2018 I’ve needed more sleep.  If I don’t get eight hours, the pain will increase.

This year I hurt my same knee and the pain was excruciating.  My PM neurologist put me back on a small dose of narcotics (I stayed on the muscle relaxant all these years) but, since February, I’ve had horrible pain in my hip, back, and knee.  Some of it might be due to prior injuries playing sports but it came on suddenly.  The MRI of my knee showed a few things but, in Mayo’s opinion, nothing that required surgery.

I had to add melatonin to my nightly cocktail.  The pain sometimes wakes me up.  I have nerve pain in my left foot so I have to sleep with a special ice sock or the pain won’t let me fall asleep.

I’m one of the rare cases where the pain is the most disabling part at this point.  I use a rollator inside and a PWC when I leave the condo, even for short distances.

I have very few upper motor neuron symptoms so spasticity is not a factor.  Most nights I wake up multiple times since I’m a big water drinker and don’t believe in depriving myself of water just so I’ll sleep through the night.  Also, stretching makes my pain worse.  PT makes my pain worse (I’ve tried it four time with the same result.).

With the meds and lifestyle modifications, I can usually sleep 7.5-9.5 hours per night with two wake up cycles.  I do get the full cycle of sleep multiple times each night and feel rested when I’m up for the day.

The pool does help but, at this point, I need a day or two between going in.  I had to give up yoga, tai chi and other body work due to the pain.  I’ve even consulted professionals but nobody can explain why ROM makes me hurt more.  I do have good ROM because I can still move and I don’t have spasticity.

Everyone’s different.  I’m lucky to have very slow progression but unlucky to have nerve pain.

[Kim Belden]

Being exposed to any viral infection can cause post- viral syndrome.  Getting Coved can cause long Covid Syndrome.  There might be  correlation between any vaccine and any disease but correlation is not the same as causation.

Also, since MS is an autoimmune disease but ALS is not, I don’t see any scientific reason to think getting vaccinated would be suspect.

[Kim Belden]

The best way for healthy weight gain or weight maintenance is to eat what I call “super smoothies.”  I use a Vitamix (I have a doctorate in naturopathic health with a specialty in nutrition).  My base is walnut milk.  I add full-fat Greek Yogurt (for protein if you can tolerate dairy) 1/4 cup flax seeds (freshly ground, if possible) frozen berries and pineapple, an avocado, raw cocoa, allulose (natural sweetener that doesn’t spike blood sugar), a Tablespoon of MCT oil, and inulin (a natural fiber that dissolves very quickly.). Allulose is not as sweet as sugar so it’s trial and error.

My protein shake easily adds up to 1,200 – 1,500 calories.  It is filling!  I experiment with different whole foods.  Also Kate Farms makes a drinkable coffee shake but I think it’s only about 300-400 calories.

You need protein, fat, carbs, and fiber with every meal.

[Kim Belden]

Neither.  I’m just a sojourner.

[Kim Belden]

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 their insurance until Medicare kicked in (back then there was a five-month waiting period.)

Instead of waiting over a year,  I would have moved to the beach immediately.

I would have taken a trip back to the Maldives and a few other places.

[Kim Belden]

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.

[Kim Belden]

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 2018.

I’ve interviewed over 100 PALS and even more CALS.  Pain is very common at all stages of ALS and I went to three Centers of Excellence to be told there is very little pain in until the end stages.

[Kim Belden]

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 loved people to find out what I eat at home and surprise me with a dinner.

I think PALS in later stages want their CALS to be treated to things that help them cope.  I don’t have a CALS but, if I did, I’d want him/her to have some time away from me and my needs.

Now, I’d love someone to gift me with a monthly cleaning service and do grocery shopping for me.  I’d like someone to automate my condo, install an automatic door opener, and help the huge expense for caregivers.

I’ve met many PALS/CALS and just keeping up with progression can be a full-time job.  Those without financial resources need advocates to do a better job.

[Kim Belden]

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 I ordered an ultra light PWC that folds and can be used for travel/short trips to parks, etc.

Is everyone having these long lead times just to get batteries.  I thought about buying them online and paying someone to install them.  They are in stock everywhere so I’m not sure why Ability is holding this up for so long.

They are paid by Medicare so I understand the approval process but I’d be willing to pay up front, then get reimbursed.

[Kim Belden]

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 activities. I don’t need to travel. Did all that when I was young. I’m getting involved in my new church and cultivating relationships.

I have no family so my friends are important to me.

[Kim Belden]

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.

She let me tell her my comfort zone and told me when I needed a rest to hold up my finger. She was very gentle and I did well.

I’ve always only had one cleaning a year because I don’t build up plaque and brush and floss at least twice a day. Now I’ve stepped it up to two cleanings a year for as long as I feel comfortable.

I would advise PALS to get dental work such as crowns/fillings, etc. early on.

My dentist can move her chair and have room for a PWC, if necessary. I’m still walking…..not much but I have pretty good balance so I can navigate in and out of chairs easily. I’m not sure what I will do when a daytime Trilogy and PWC is in the picture but I’m sure glad I got both crowns done. They said everything else looks very good so that made me happy.

[Kim Belden]

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 fire department and power company.

[Kim Belden]

My psychiatrist and also my pain management neurologist believe that it is super effective for depression and, in higher doses, for pain.

I have a heart arrhythmia but I’m still considering it. I know it has worked wonders for people I know.

With ALS, I definitely think it’s worth a shot.

[Kim Belden]

Those of us who live alone and are not veterans can go through assets pretty fast.  There are PALS without children or without a spouse who must hire outside help early on.

We’re the only developed country without universal healthcare.  If a PALS progresses very slow, they end up with substandard care in a nursing home.

I already buy two of my meds from Canada and I have a good Part D and the best Medicare supplement money can buy.

Many PALS don’t have the option of getting vented because they cannot afford 24/7 assistance.  Even those with large families are struggling to get by.

I’ve met dozens of PALS who don’t have a CALS (primary family caregiver.). I think this fact gets overlooked.

[Kim Belden]

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 inflammation on the bottom of my left foot and in my tendons.  I developed tendonosis in both legs.  Stretching the correct way made it worse.  The only relief, for me, is gentle pool exercise.

My pain management doctor has helped me medically manage the pain.  Ice helps some spots but heat helps others.  I take CBD (Charlotte’s web) THC tincture, lots of magnesium, supplements for inflammation, rub magnesium oil on my muscles every night, use a compounded topical cream that has five ingredients, Valium for muscle relaxation, and Oxy for severe break through pain.

I’ve interviewed hundreds of PALS and CALS when I did an awareness paper in 2016 and more than 50% reported pain that wasn’t spasticity or cramps.

You’re certainly not alone.

You’re welcome to message me.

[Kim Belden]

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.  “It’s just ALS” is what both Johns Hopkins and Mayo say. Now I see a local pain management neurologist who helped another PALS I knew.  I never drank or smoked weed so using medical cannabis and opiates really scared me.  It’s much better than the pain.

[Kim Belden]

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.