[len-jax]

Hi John and Kent,

Do you have any Lymphedema Clinics in your area? A little of my history. I had severe edema for 25 years and wore thigh-high, 40 mmHg Jobst compression hose for all those years due to venous insufficiency. That worked well for those years. I now am in a PW full-time and have been for 8 years, but I still can do transfers. As I spent more time in my PW, the edema became worse due to inactivity, and I could no longer get the hose on.

The specialist doctor prescribed a machine that applied air pressure to inflatable zippered leggings. It began at the feet and progressively increased pressure up the legs and over the thighs – the idea was to force the fluid toward the heart to filter it out. It helped a little, but the legs and feet filled up quickly. My legs/toes didn’t have ulcers but were weeping fluid through the skin. I no longer had ankles, and I filled out a size 12 shoes that were 10E wide. I laughed. They, indeed, were “Clown Shoes!”

The neurology team and primary and specialist doctors had no solutions other than more Lasix! Later, I couldn’t get an appointment for some issue with my PC doctor, so I made one with her Nurse Practitioner. She treated my problem and then asked how my edema was. She had read my chart thoroughly! She examined them, took pictures for the chart, and said she would refer me to the Lymphedema clinic on the second floor of the clinic. I cannot say enough good things about NPs and PAs which I have had over the years. They spend more time, are more accessible, answer questions by email, and think outside the medical box! Before she became a nurse, my NP worked in an auto parts store and was ASE-certified with car parts! She is the Best!

I spent about ten weeks with the “Lymphedema Ladies,” going twice a week for therapy. They are all OTs. I reclined in my power wheelchair for treatment as I could not transfer to their table.

My lymph fluid had started to gel or thicken in several places, especially the feet and ankles. They work on massaging those areas, breaking it up with their hands and a light suction machine, and working it toward the heart. It is relaxing as they turn down the lights and play soft music. My legs were so large I didn’t feel much in my feet. After about 6 treatments, I felt tingling in my feet – It had been a long time.

In between treatments, you must wrap your lower legs and feet with a special ace bandage (it is cheaper but requires more time). We did that at first because my legs were so large. You wear them all the time except when showering. As therapy progressed, we went to a compression sock with a lower leg Velcro wrap that they cut to your current size. Those were easier but more expensive. They measure every 4 visits to evaluate and adjust your Velcro.

My legs were reduced by 5 inches in circumference in certain places, but my ankles and feet are normal-sized, and I can feel them! The little walking I can do is much easier without the extra weight and size! I do have to wear knee-high compression socks and a lighter-weight Velcro leg sleeve. I wear those 24/7, except for showers 2 or 3 times a week. You must wear them all the time to maintain the fluid loss; many people don’t and return to where they were. My legs have been normal-sized for 1 1/2 years and feel so good! You can have a Vacation day now and then but must return to it. The sweet thing now is that Medicare covers two pairs of socks and Velcro wraps every six months, as they lose their compression.

It is an emerging treatment option that has been around for quite a while but has yet to be accepted by doctors. The OTs are doing an excellent job of promoting it as the gold standard! The OTs say they can also help people with edema before it develops into Lymphedema.

Hopefully, this helps all of you. It did for me, as I was close to having ulcers! I am sorry for this turning into a long book, but I wanted to explain the whole treatment because it does improve your quality of life! It is a win for us – and we need more of them. You could do a Google search for Lymphedema clinics near me. Several came up in St.loius for me.

Len Jax

[len-jax]

Hi AAB,

You are doing fine with your post.

From your Bio, I see you have a probable diagnosis of ALS right now. That is quite an abrupt change and scary, I am sure. ALS does not have a standard rate of progression – everyone is different. You can have changes like you had or reach a plateau for a while; you never know what is next.

Both of these are part of the disease. Are you on any medications for either of those issues right now? If not, I would call your neurologist and ask them for advice. The end of October is a long to wait.

I had both uncontrolled crying and laughing at one point. It is called the Pseudobulbar Affect. Your neurologist can prescribe a med to help with that. Here is a link to Mayo’s description.

https://www.mayoclinic.org/diseases-conditions/pseudobulbar-affect/symptoms-causes/syc-20353737

I also have weakness in my legs, but my arms are fine. I am in a power wheelchair but can still transfer to a chair or toilet using a rollator walker or grab bars. Your neurologist probably will have medication to help with that, too. I would suggest getting a rollator walker for stability to avoid falls.

I hope this helps. You are not alone!

Len

mayoclinic.org

Pseudobulbar affect - Symptoms and causes

Pseudobulbar affect - Symptoms and causes

[len-jax]

Amanda,

That is indeed good news. You have been on the ALS treatment roller coaster, from highs to lows and back again to highs! Keep the positive attitude you have to ride the next wave. I am sending you energy in support of your next round of treatment. You go, Girl! Keep the faith!

Len

[len-jax]

Hi Timmy,

Do you take the medication Trazadone? I am in my 70s and have a slow heart rate, 40 – 50. Many years ago, I was prescribed Trazadone as a treatment for depression along with another drug. I was on a regular dose originally, but it was increased. About a month later, my heart rate went down to 32, and I was hospitalized overnight. The doctors didn’t have a clue what the cause was. I finally asked if it could be the Trazadone. The doctor researched and found it to be a rare side effect that is not often seen. They discontinued it, and my heart rate returned to my 40+ range.

Yours is a very slow heart rate. Do you have any other effects from the slow rate? If your doctor was not concerned about it, who was recommending a pacemaker?

Len

[len-jax]

Hi Luna,

I also struggle with dry mouth when I sleep. Does your husband use a CPAP or BiPAP machine for sleep apnea or to assist with breathing at night? I have had sleep apnea and have used a CPAP for years. I used a chin strap for years to keep my mouth closed, and it worked well. As I lost my ability to speak due to ALS progression, my mouth, lip, and cheek muscles became weaker, and my lips parted as I slept. I would wake up in the morning with my mouth completely dry and teeth glued to my cheeks. It was painful to peel them away. I would also grind my teeth while sleeping and wake up with a fine grit film when I brought my teeth together.

I had also tried the sprays and gels, but they didn’t work either. I even tried the tape strips across my lips, but that didn’t work. (I considered using DUCT tape but decided it would be painful with a beard)

What has worked is that my dentist made a pair of Invisalign covers for my teeth to prevent grinding. I tuck an ACT dry mouth lozenge between my cheek and teeth. The dentist said not to put them in the same place every night. Finally, I got a new chin strap with more tension.

The ACT lozenge slowly dissolves overnight, creating a sticky film on your cheeks, teeth, and lips. My lips are coated with a sticky coating that I think helps keep them closed. You don’t need the Invisalign covers for it to work; they are only needed if you grind your teeth.

Hopefully, this will help you—waking up daily with a dry mouth is painful! I also have found an effective remedy for cheek-biting, but I will write about that later.

[len-jax]

Hi Vijaya,

If I understand your wife’s issue, she tends to slide/slump out of the chair, which is uncomfortable. Is the air cushion you have one that has air chambers across the complete seat? I had an opportunity to sit on a cushion like that and slid toward the edge. That slouching position is not comfortable.

I have a Permobil F5 wheelchair with a ROHO Hybrid Elite cushion. The front 1/3 of the cushion is rigid foam shaped to your thighs underneath, with firm but softer foam over it. The back 2/3’s of the seat, where your pelvic bones are, are air chambers.

Your sit bones settle into the air chambers, but the rigid foam in front prevents you from sliding forward and slouching. You can get a single chamber cushion or a dual one. (Right and left). I have a dual air chamber model as my core muscles are gone on my right side, and I lean toward the right. I inflate the right side more and the left less to sit more erect.

Permobil owns ROHO, but the cushions can be purchased separately in many sizes. I have included a picture of it from Permobil’s website below.

I have good muscle strength in my legs and arms at this time. To reseat myself fully back in my chair, I tilt myself back so I lay on the backrest, then I push with my feet on the footpads and with my arms on the armrests to complete the move. I believe your Quantum tilts back all the way. It sounds like your wife no longer has that much strength, but you could tilt her back like that, grab her under the arms, and pull her back up. That way, it uses gravity, and it is easier on you.

Hopefully, these suggestions will help.

Len

[len-jax]

Hi Amanda,

One of the things that helped me deal with PLS/ALS is my sense of humor. It is often dark and occasionally gets me into trouble. The following are a few humorous moments that I have had along the way.

When one has a progressive disease, one becomes aware of the energy one expends to do any task and tries to conserve it as best possible. I wore thigh-high compression socks for many years, and getting them on and off was always such a chore. It was even more tiring when I started using a walker, so I adapted the process. The dressing bench where I sat was about ten feet from the laundry basket. At night, I started throwing my socks into the basket to save steps, even pretending I was an NBA star making three-pointers. I was so pleased with my athletic prowess, a small joy in the mundane task of daily living. I was reveling in my newfound game of “Sock Ball.” I tried to make a bank shot off the wall at one point, and they went directly into the toilet! My sockball career was over. I laughed as I fished them out of the commode; what a mess! I was thankful that I had remembered to flush. I grieved the loss, accepted the defeat, adapted using the walker, and then moved on, saying goodbye to my budding career.

I see my Neurologist every six months, and he has helped me a great deal. Sometimes, I tend to be a smart ass; in reality, it is more often. The doctor always came out to the waiting room to greet me and assess how I was walking when I could still walk. He said, “Len, how are you doing?” I usually say “Good” or something along those lines. I was in a good mood, but my dark humor got the best of me. I said, “Hi Doc, well, I’m better than dead, which means I am excellent.” As soon as he heard the word dead, I do not think he listened to the part about me being excellent. He concluded I had significant depression from that statement, and I could not convince him otherwise, no matter what I said. In hindsight, if I were the physician, I would have said the same thing as he did – I had cooked my goose that day! I have suffered from depression, been on medication for it, and gotten off medication a few years back, so I am well attuned to what depression feels like – I knew I was not depressed. Prescription for Prozac in hand, I left the office. My current greeting is, “I am Fantastic!”

I am amazed at how slow I have become. I have often said that I will stand still if I move any slower! On one occasion, I was in the bathroom standing in front of the mirror, and it took 35 steps to make a 180-degree turn with my walker. I immediately thought that would be a catchy title for my next book, “Thirty-Five Steps to the Other Side.” Then, realizing I had not gone anywhere, I changed it to “Thirty-Five Steps to Nowhere!” It will be a best seller.

It should be against the law for any doctor to prescribe Lasix to someone who uses a walker or wheelchair. It is cruel and unusual punishment!

One day at physical therapy, Art asked how I was doing. I replied, “Not so good. The Jockey company canceled my modeling contract for their underwear yesterday. They found out I was wearing Depends!”

As Art, my physical therapist was helping me sit up and stand after laying on a therapy table; my spastic legs were still stiff as a board. He had to push them down to the floor for me to stand. As he hovered over me, always anticipating a fall, I leaned on my walker and said, “You know when I do die, rigor mortis will not be such a big deal!”

One must laugh at life and see the humor in whatever it throws at you. It is very freeing.

Life is good.

Len

[len-jax]

Hi Amanda,

That is excellent news, mainly because the gene can produce the SOD1 proteins correctly! And the reports of pALS gaining function are fantastic! It certainly provides hope that it may yield avenues to treatment and cures for all the other variants of ALS.

You were diagnosed recently after being in Limbo for years based on your gene markers and family history. Might I ask what your diagnosis was based on: a test, loss of function, symptoms, or a combination of all of the above? I would understand if you choose not to discuss that here.

Thanks for sharing your journey!

Len

[len-jax]

Hi Amanda,

Halving the progression rate for the SOD1 mutation is a definite win for QALSody! Whether it be a scientific miracle, God’s miracle, or just the hunch of a researcher, be thankful, celebrate, drink wine, and dance in the streets! We all cheer you on because a win for you is a win for all pALS in the puzzle of ALS.

I think of myself as a small part of the 10,000-piece three-dimensional puzzle that it is. You were in the right place at the right time to try a promising treatment. Your data may provide a tangent of thought for researchers to pursue a cure for the myriad of variants! Each piece of the puzzle has profound hope as the beast takes form. Each piece is another bit of knowledge, and with knowledge comes a cure.

Please don’t go down the guilt trip path of destruction. It doesn’t help you, me, or any other pALS. It will distract you from advocating for the cure and dampen your positive attitude.

By all means, start a blog right here on ALS TODAY. Possible names: “Amanda’s Journey with SOD1”, “Amanda’s Piece of the Puzzle,” or “The Joy, Hope and Grief of Treatment”! Whatever you call it, it will provide perspective and comfort to all.

We thank you for all you do!

Len

[len-jax]

Alan and Heidi,

Thanks for the comments. I think one has to know sadness to experience joy. I think of my writing as being depressingly optimistic, as is the music I listen to. It is sad but, in the end, also hopeful. That keeps me going!

The link to the song I included in my memoir story did not make it through the approval process for this ALS site. (And I understand their reasoning) It adds a lot of meaning to the story. If you want to listen, type Freya Ridings “Lost Without You” into the Google search bar and scroll down to the one that says Glastonbury YouTube · BBC Music · Jun 30, 2019.

Heidi, I was an avid gardener and also created multi coursed meals for the love of cooking. Your “Less is More” mantra is appropriate for all pALS. I downsized to a few plants on the porch a few years ago. This year I surrendered those pots to Linda, and we bought an orchid that brightens every day that I wheel by it! I give it five ice cubes a week, which gives me great joy. When that gets too much for me, I will adapt and buy Bromeliads or Air Plants!

I also hung up my frying pans last year. I have a young home health worker come in for 3 hours a week to give Linda a break. I have him clean the bathrooms, and then we cook recipes together. He has had no experience cooking but is eager to learn and enjoys it. I can no longer speak, but I write out all the steps in detail to make my favorite healthy recipes. (It does take a lot of time) I also use a text to speech device. Linda gets 3 hours off, has the evening meal made for her, we have enough for a leftover meal and one for the freezer. If he likes the recipe I send a meal home with him. The kitchen is clean when he leaves. We can sit around a play cards but it is a way for me to do something to lighten the load for Linda! It is a win for him, me and Linda!

My Mantra when I was working, used to be “Don’t Sweat the Small Stuff.” With ALS it is now “Don’t Sweat the Big Stuff – Less is More!”

Len

[len-jax]

Writing brings me understanding, acceptance, joy, and peace. Sadness has become my friend in this process. It allows me to grieve what I have lost. The following is an excerpt from the memoir I am writing.

One of the most challenging things I had to endure, to accept unconditionally, is surrendering the relationship I thought I would have with the Grands, Henry (8) and Ellie (5). I have found that preconceived thoughts of how life “Should be” are the most difficult to lay to rest in accepting the present.

It began with not holding Henry as long as I should have been when he was a baby in Chicago. It was hard to stand up straight when cuddling and comforting him to sleep. Later it progressed into losing the ability to run with him, all tell-tale signs of my disease in its infancy. But I still could read stories, get on the floor to play cars or blocks, and relentlessly tease him!

When Ellie was born, my ability to hold her was limited to a few minutes of standing or, for a longer term, if I was sitting down. I have never been able to get on the floor to engage at her level. This floor time has always been part of the fabric of my life in bonding with children. It was all about play and silliness – building a relationship based on fun and interaction at their level. Observing the world through a child’s eyes is one of life’s wonders. It is one of the joys I have always cherished.

As I have said, saying goodbye to activity with Henry and Ellie has been challenging and ever-present. At first, I felt extreme sadness whenever I could not join in. Slurred speech does inhibit one’s ability to read stories and carry on any meaningful conversation. Running races and losing by inches is not possible. Playing tag or hide-and-go-seek didn’t work well – have you ever tried to play them from a 400-pound wheelchair? I missed building with blocks, playing doctor, playing cars, playing in the sandbox, playing dollhouse, and pounding nails in wood scraps out in the garage to make strange creations.

The sad occasions of being unable to engage in their lives have brought many tears in the private moments of my life. One of the comforts I have found in this vast emptiness was to hear the joy in Henry and Ellie’s squeals of pleasure as Linda (my wife and caregiver) chased them in the basement. It brought me out of the depths of sadness. Even though I could not be involved in the chase, I was so thankful that Linda could. She was having much-needed fun, as were they! Life was good as I had finally said “Goodbye” to that activity which brought peace to my spirit. This goodbye has been challenging as it has revisited me many times since my diagnosis. Each time I feel the sadness and the loss anew. And, each time, I have to say “Goodbye to You” again. It does get easier, or perhaps I am becoming hardened to the sadness. Yet Henry and Ellie are such joyful souls that bring me immense hope for the world that will remain long after I am gone. That is good.

I find comfort in the thought that my son and daughter-in-law provide all the love, activity, and fun that the Grands could ever need or want. Now, I am simply an observer of the life that Linda and I created.

My mantra in dealing with the losses of ALS has always been to grieve the loss, accept the loss, adjust, and then move on (GAAMO). I constantly adapt and move on to something I can do. Sometimes it works, sometimes it does not, but one always must try. It has worked well for me. Slowly, I am coming face to face with the fact that my options for adapting are shrinking by the dawn of each new day.

As a song for today, Freya Ridings sings “Lost Without You.”
Press the “F” key for full screen.

Sometimes I listen to this song in heartbreak and isolation, as Freya says. I am standing on the platform, thinking life was passing me by because I think I’m lost without my life as it was. But now I’m standing on the platform, happy to watch Henry and Ellie go on. Their beginning is my end. The circle of life is lovely, and the reality is that life is as it “Should be.” Life is good.

Len

[len-jax]

Hi Tracy,

You are right. “Aw, things will be OK” doesn’t apply because they aren’t OK.

Just your presence and the fact you cared enough to visit will probably lift his spirits. I would be honest about your anxious feelings and share them with him. Does he have a method of communicating? If he does, I would attempt to talk about his feelings and what he is going through. The grief may come, and that is OK.

I, myself, grieve every day for what I have lost. Somedays, it is just a passing thought; other days, it is a good cry! I have to let it out. In my life, sadness is the first step in grief. A good cry often allows me to move on to acceptance and clears my mind. It can be a cathartic moment that changes my perspective.

I respond to hugs and touch, so those are good for me, but you know him – if he was not a hugger before, he might have changed. It sounds like you have worked with him for a long time; reminiscing about any good times or funny stories at work would be enjoyable. Talking about family, yours and his, would-be another avenue.

You are a professional musician from your profile – bring your instrument along and play for him. Music always lifts my spirits – I listen to youtube videos every day. I call my genre of music depressingly/optimistic. It has a feeling of loss but always provides some hope! If you want suggestions, let me know.

Fear and anxiousness are normal in any unknown situation – go with the flow – you will do great! I chose to stay in a nursing home once for respite to get over the anxious feeling of the first time. The fear is then gone! I know I can deal with anything that comes up. I have stayed in several now, some good, some not so good, but I am still here!

I hope your visit goes well. Please let us know how the visit goes – you can provide much needed
information to the forum!

I hope this helped; peace to you.

Len

[len-jax]

Tracy,

I am so glad your visit went well! Thanks for sharing how it went and giving this community your ideas of what makes a visit enjoyable for a pALS and the visitor. You are a true friend.

Len

[len-jax]

Amanda,

You waited in the periphery of the ALS community for so many years with the knowledge that with your family history, it was inevitable. I was so sorry to hear about your diagnosis when you posted it in December, but I’m happy you finally got access to Tofersen. Four to five months is an eternity in our ALS world. Godspeed to you and all the others in your journey of hope!

Len

[len-jax]

I did voice banking when I was first diagnosed, but my speech quality declined rapidly. I made it 90% through the process and had to stop. The company tried to synthesize the remainder of my voice from what I had recorded. It did not sound like the me I knew.

In retrospect, I would not have wasted time and effort even if it had been an accurate representation. Having ALS causes us to lose many abilities, sometimes quickly, and on top of other losses. Time is precious; I could have spent it more wisely.

I am thrilled with all the voice choices I have available. The important thing is you have a “Voice,” not that it has to be yours. I have fun with it, often changing voices. I have been male, female, a kid, British and Australian; whatever matches my mood that day! I have been searching for Steven Hawking’s voice which is my hero’s. I think it would be great to be Hal from 2001 The Space Odyssey. People always smile when I start talking as it engages them in my world.

The other thing I did not do soon enough was to switch from using a cane to a rollator. I fell about 20 times before it sunk in – good thing I have strong bones!

That school of hard falls taught me to transition to a wheelchair sooner than later. Given my rate of progression, I thought I had about six months of walking left, so I got a power chair. I only used it at first for long excursions. Six years later, I am still walking a bit to do transitions. It is essential to get it early so you have it when you need it – the process does take time. It is also easier to learn how to use it when you have not lost as many abilities. I practiced in the garage with garbage cans, shelves, and mowers around to know how close I could get and maneuver around them.

I chose to get one with seat elevation and standing capabilities because, at the time, I still cooked meals for us. The benefits of the standing function are: being able to use a urinal if you are male (yes, I do get looks); it just feels good to stand up; if I have phlegm stuck in my throat, it is easier to cough it out standing up, and finally, you can open the freezer doors at the grocery store!

Len

 

 

[len-jax]

Hi Sonsu,

I had edema in my legs and feet for 20 years before getting ALS. I used to wear thigh-high Jobst compression socks but can no longer get them on having ALS. If you have mobility, you might want to try the shorter compression socks if you can get them on. There are devices to aid in getting them on.

Things I did that helped:

 

• • I reviewed my meds with my GP for any that caused edema. She recommended stopping Gabapentin, which I take for neuropathy pain.
    • I lost 15 pounds of water weight, and my leg circumference went down 3 inches over 2 months.
    • Neuropathy pain returned, so I restarted Gabapentin
    • Edema returned
  • I spoke to a Pharmacist about options – She recommended Cymbalta (an anti-depressant), which had some data saying it also helped neuropathy but didn’t cause fluid retention.
  • I was on Prozac, so I discontinued that.
  • At this time, I have started to lose water weight, and my neuropathy has not returned.
  • So, talk to your Doctor and Pharmacist
• I am in a power wheelchair full time
  • An exercise I do that helps
    • Extend the foot pads straight out – it will put pressure on your feet and legs, pushing you back in the chair. Bend your knees and straighten them 20 times, 4 or 5 times daily, to increase the blood flow. (It is similar to a leg press)
    • If you can still walk, do that several times a day.
• I sleep and nap in a lift chair that gets my feet above my heart, so the fluid drains from the feet and legs – this helps a lot.

Hope that helps,

Len

 

 

[len-jax]

Hi Dagmar,

Is that Read Aloud app an app you purchased, or is it something that came with your computer? I have a Mac.

Len

[len-jax]

Hi Dagmar,

Are you sending this on to Hawken or should I do that?

Thanks,

Len

I have owned two Corpus M5 wheelchairs since 2016. We have been joined at the hip (so to speak) from day one! What caught my eye when first looking at wheelchairs was the Permobil online video clip of a guy using a urinal. I wanted to be able to do that, and I did! Guys tend to be pretty quiet in the bathroom, so there was a lot of silence, but everyone stole a glance. I do get some strange looks, many smiles, and a few; wow, that’s quite a wheelchair!

I was an avid home chef and continued cooking with my first M5, creating meals because I could stand in it. Sadly, my fine motor skills have deteriorated, so I had to hang up my spatula.

I am amazed at how helpful the M5 is. Thanks to its tilt function, I am still able to stand up to do transfers in the bathroom. I then put a six-inch carriage bolt in the hole for the chest bar to grab, along with the grab bar on the wall, to lower and get up from the toilet on my own.

I can elevate above the display case at the grocery store deli counter to communicate with the attendant using my AAC device. I then move on to the frozen food section and stand to open the vertically hinged freezer doors to select anything I like.

I just returned from a ten-day respite stay at a nursing home so my wife, Linda, could get a much-deserved break from her caregiver role. There, I spent ten days 24/7 in my M5, except for going to the bathroom. Thanks to my ROHO seat, I can do that comfortably. I find their standard beds very uncomfortable, so with a foam bolster to support my legs, I go from a standing position into a prone position to sleep in my wheelchair. I sleep well and can move any part of my chair to maintain comfort.

People are always amazed at my independence, even though I can no longer walk or talk. The M5 allows me to do as much for myself as possible to lessen the load of those around me!

[len-jax]

Hi Amanda,

That is excellent news! Celebrate the win!

[len-jax]

Hi Amanda,

I have not needed to decide whether I will get a feeding tube. I thought I would have to make that decision soon, as at my neuro visit, using the quick breathing test in the office with the small portable machine hooked up to the laptop, I scored 41%. I was not having shortness of breath but got tired and had to rest during the day. My doctor scheduled a complete workup with the pulmonary breathing test and an artery blood gas test for oxygen and CO2 levels. On the breathing test, I scored 67%, and on the blood test, my oxygen was a little low, but CO2 was in the normal range.

In my case, the quick test was wrong, as it can be for several reasons, so I explored further. You may have had an accurate test and have the correlating symptoms. I did not.

Given your intense family association with ALS, your internal conflict brought to mind an analogy that may help put your mind at ease. I assume you have a car and have insurance coverage to protect that car against the possibility of damage in case of an accident. Most people do not have many accidents over their lifetime but have insurance for peace of mind in case you do have one. Think of it as protection for your car for the future – It is there when you need it, and hopefully you won’t.

The feeding tube is your insurance policy; your health insurance should cover it, so it is free! It is there if you need it. Hopefully, you won’t, but it gives you peace of mind and options for the future!

I agree with Dagmar; you are confronting your assumptions about ALS, which is scary. You will make the right decision for you, and your mind will be at peace.

On a lighter note, If you get the feeding tube, “You will be able to get your cake and eat it too!”

I hope this helps.

Len

[len-jax]

Amanda,

That is such good news! A win is a win, no matter how small, and ALS teaches us to celebrate the small stuff!

Len

[len-jax]

Tracy, Art,
Thanks – It helps me to process my world as it is now…to find peace where I can. May you do the same on the path you are on.

[len-jax]

Alan and Heidi
Good song by Warren – at times, he has the tonal qualities of Bob Dillon. I see that our minds are on the same track with playlists when…. Music lifts my spirits every day.

Heidi,
Your ‘Smithing’ skills are also commendable – It is always rewarding to tell a good story, especially from the heart. Like you, it is currently my voice and my therapy. Linda did not mind your comment – I share it all with her.

I send my memoir stories from an online program I write through. It will be completed and published when I am gone. So far, I have about twenty stories, mostly about my present journey and thoughts on what I have learned. I include some stories of growing up on our Minnesota/Iowa farm and rural school life during the 1950s and 60s. I send it out to about seventy people when I write a chapter. I usually provide a link to a song that enhances my writing.

If either of you would like to read them (for that matter, anyone on this forum), send me a private message with your email, and I will include you on the distribution list.
Len

[len-jax]

Hi Ed,

I am intrigued by your comment regarding using the cough assist machine for therapy. The company that I got mine from made no mention of that.

How did they recommend using it for therapy? How often? Duration?

Thanks,

Len