Go on, Be Brave

[MJT]

Kim, I've never thought you were bitter or acting superior, but just the opposite. Kind and (I hate to use this now-loaded word, but it was the first to come to mind) brave. I only wish you had an advocate who could call and bug Mayo.

 

[Mana]

Kim, you have supported and inspired so many people on this forum. I’ve never thought your posts were angry or superior and I never realized you were in so much pain. You are a true hero. Sending you all positive energy And hope for positive outcome.

 

[KimT]

MJT, I've been calling and bugging Mayo for awhile. I think because it's not ALS related, they aren't sure they want to take me on for surgery. I'll probably end up going with Jewett Orthopedic. They have a very good reputation and I've been seen by a knee specialist there. I just really did want another opinion from Mayo. I've compiled MRIs of my knee that show progression of the many issues from 2018 to present so I've decided to send them to Head of Ortho and Head of Neuro at Mayo.

I do have one other option and that is to to to University of Florida for an opinion.

Everything seems to have hit the fan this week. I'm on the condo building committee and help with technology at the condo. We switched from Uverse to DirecTV streaming. Most of our residents are elderly and forget passwords, can't figure out their cell phones so they have so many questions. It's hard to walk them through things on the phone so I usually wheel up to their condo and walk them through in person. Being in the PWC makes it hard. Gone are the days when I could slide under an entertainment center and do the hookups myself.

Just helped a guy who turned 100 this year. He still walks the beach!!!!!

 

[Tomswife]

Kim. We are all thinking of you and sending good healing vibes your way. Our forum collective energy is for you to be pain free. Dont go to the doctor in the attached pic!

 

[kljack16]

Thank you so much for this. I just lost my husband after 2 1/2 years with this disease. I’m struggling so much with all the “what ifs” and “should haves,” but one of the things that hurts the most is seeing all the people who are living such a full life even with this disease. I question why we didn’t get that - and it’s exactly what you said. Between the pain caused by the jostling around from the bumps, the constant fear of choking that happened daily the last several months … it just became too stressful and dangerous for him to do much of anything.

I truly hate this disease and I hate that others suffer as much or more than Timothy did, and I love that some people are able to still find ways to live their lives, but I agree it’s misleading to think will power and determination alone makes a person able to overcome the obstacles.

I told Timothy early on, when he tried to will his way to be able to walk from the bedroom to the couch, with my help, that if it were only a matter of will power - he’d walk forever. Sadly, we knew that’s not the case.

I hope the producers heed your comments and help everyone know that while there are inspiring acts of courage and strength, sometimes with this disease, that’s just not enough.

You all are constantly in my thoughts and prayers, and I pray more than anything that they figure out this disease and find a real treatment or cure.

 

[Tomswife]

I am sharing some insights into ALS that show why the willpower, be brave mantra, you can run and hike mantra is ignorant of the complexities of ALS at the individual level.

"ALS should be considered a syndrome with a broad spectrum rather than a single disease entity because its symptoms and clinical course are very diverse (e.g., UMN vs. LMN predominance, bulbar vs. limb [spinal] predominance, rapid vs. slow progression, and the extent of concomitant cognitive impairment) [5]. ALS was once considered a pure motor disorder with ‘3 Ps’ (progressive, painless, and paralysis); however, a growing body of evidence indicates that ALS is a multisystem disease with early and diverse non-motor symptoms including cognitive and behavioral changes, neuropsychiatric disturbances, sleep disruption, excess secretions, metabolic abnormalities, bowel and bladder dysfunction, changes in bone health, olfactory and somatosensory impairment, and pain [6]. These non-motor symptoms of ALS have attracted research attention over the last decade, with the identification of a repeat expansion of the C9orf72 gene in some patients and many shared pathologies across the spectrum of ALS and frontotemporal dementia in these patients".

Source is

Pain in amyotrophic lateral sclerosis: a narrative review​

Soyoung Kwak. J Yeungnam Med Sci. 2022 Jul.
Free PMC article

 

[KimT]

Another consideration is that many with ALS have other health issues as well. I was in a bad car accident in 2000 that left me with c-spine herniations and a dislocated jaw. I also broke three ribs. I had another old sports injury that left me with a rotator cuff tear.

I'm used to pain but as we age, old injuries can become problematic. I now have osteoarthritis and osteoporosis to add to the pain.

From the time I was 14 until after my diagnosis at 60, I weighed between right around 110 pounds, give or take a few pounds. I never went on diets and ate healthy. I did resistance training, ran most days, and played competitive sports. I had a dexa scan when I hit 50 and my doctor said my bones were as dense as a 30-year old. Well, all that changed between my diagnosis and now. I did gain 30 pounds that Mayo recommended so now I've weighed 138 since 2017 (it took me awhile to gain the weight.). I eat extremely healthy and take all the supplements for bone health. I even went so far as to finish my doctorate in naturopathic medicine, both to keep my mind sharp and to learn about alternative therapies, especially nutrition and supplementation.

I would caution everyone to not attribute everything to ALS. I know PALS who have thyroid issues, diabetes, vasculitis, and autoimmune diseases and have had them long before being diagnosed. It's important that we get other conditions treated.

One of the things I always advise is go to your dentist when you're first diagnosed and get everything that needs to be done. Same with eyes and ears.

I did not have cataracts but my doctor was willing to do lens implants (Panoptix) in 2019. I had worn corrective lenses but at an ALS support meeting I tried out a Tobii and it was very hard to work because I was wearing progressive lenses. I tried with contacts and it worked. By 2019 I could no longer insert my contacts because my left hand had fine motor skill issues. Now I can see 20/20 reading, computer and distance. I got two crowns in 2017 and still get my teeth cleaned every year. I do my best to take care of my general health. There are some things that can't be fixed but I'm still hopeful I can get my knee fixed. I have a telephone consult with Mayo tomorrow.

I realize that PALS with fast progression cannot get many of these things done but I also know some PALS who have put things off and are progressing slowly but it's hard to go to the dentist.

We're all different. We all have different support at home and different financial situations.

So we should never use a broad brush when speaking about motor neuron diseases.