[chris-koch]

Both myself and husband plan on getting the vaccine ASAP. The fact that I have ALS and there is no cure and treatment options are limited and not always effective makes me more afraid for my life than getting a vaccine which may cause some discomfort but will allow me again to see family.

[chris-koch]

I am so tired of this pandemic. I just started seeing my home schooled grandchildren again but always in outdoor settings and with masks.

I’ve been in the ER (due to passing out) and admitted to the hospital for 3 days. I have followed all protocols for staying safe and so far have been successful.

I put my life on hold from March 9th (day of diagnosis) through August 30th because of the pandemic; now I am resuming some of my normal activities as long as I can social distance (more than 6 ft) and am not in closed spaces with a lot of people.

My physical capabilities are declining quickly and I want to enjoy whatever time I have safely.

[chris-koch]

I’ve been taking cannabis infused chocolate at night and I feel it helps a lot. I sleep better and am not in so much pain. If I skip a night, it is very noticeable, I also take Tylenol at night to help with the pain. I use aa cannabis concentrate and blend with melting chocolate and pour into a candy mold allowing me to control the dosage. My current dose is 8 mg per chocolate piece.

Three months ago I was taking 4 mg in the morning and 8 mg at night – I am now only taking it at night unless I have a lot of pain during the day.

It seems to work for me.

[chris-koch]

Amanda,

I now know what was my first visible sign of ALS ; problems with my breathing. I know the EXACT DAY it started – the day my TWIN BROTHER DIED, he was only 52 years old.

I literally could not breathe, the nurse in the family put me on oxygen for a while to catch my breath.

I went to my doctor and he did chest x-rays etc and found nothing. My speech started to slur occasionally, maybe once or twice a week – the doctor had no clue other than I wasn’t sleeping well and was still grieving even after 6 months.

Within 8 months, I was slurring a lot – everyone around me noticed. MY HUSBAND asked me if I was drinking during the day or taking drugs – this was the man that I was married to for 17 years at this point, but he had to ask because there had to be a reason for the slurring.  Phone conversations were difficult.

I switched doctors a year after the first symptoms. Then I started experiencing “cramps” in my ribs, arms, neck and legs. We thought maybe I was overdoing it.

I saw another doctor and neurologist and ENT doctor; I had MRIs, EMGs, blood work and still no one could figure it out.

I was sent to speech and physical therapists – the speech therapist had no idea how to even begin to help me.

I was referred to a neuro muscular specialist – but my insurance wouldn’t cover it and I wasn’t able to pay for it on my own at that point in time.

I saw a counselor – hoping it was just grief doing this to me.

Then the tongue tremors became noticeable, and slight twitching in my arms, and the cramps were still happening but not as often.

My husband began experiencing SOME of the symptoms I had, like intermittent numbness in the arm, being slightly out of breath – and we soon discovered that the house we were renting had MOLD growing in the basement under the carpet and baseboard.

So we moved, and decided to give it time to correct itself. After about 3 months, my breathing was better but nothing else improved, meanwhile my husband’s symptoms cleared up. The majority of my symptoms so far had been strictly in the face and speech and swallowing.

By November of 2019, we finally had saved enough to see a specialist. We tried to get an appointment but there was no way to be seen BEFORE MARCH 2020. In the meanwhile, we had the EMG’s done again and two CT scans, a swallow test and a ton of blood work – seriously  on one visit they drew 12 vials of blood!

By December 2019, I noticed that I wasn’t always walking correctly and I didn’t seem to be able to lift as much as I could before.

On March 9, 2020, I saw the specialist and she had no doubt this was ALS. Almost 3 years after my first symptoms, I finally knew what was wrong.

Unfortunately,  the muscle weakness has progressed quickly for me and is very problematic. I am learning to adapt but it isn’t always easy – there are days where I just want to give up but I keep going to the next one.

So maybe there is a link between trauma and the onset.

[chris-koch]

I had respiratory onset – I suppose (read as guessing)  it started in Feb 2017; it seemed like I had a lot more sinus issues and stuffy nose etc than I have ever had. I didn’t pay too much attention to it; I was busy taking care of my brother who had cancer and we were constantly (it seemed) at the hospital for treatments/tests/complications.

On Memorial Day (approx. May 28th) 2017, he died and I experienced my first instance of not being able to breathe AT ALL – my sister (a nurse) had to give me supplemental oxygen.

After that I experienced shortness of breath daily. I saw my primary care provider, went for chest x-rays and they could find nothing – chalk it up to my grieving and loss was what I was told.

By October of 2017, I occasionally (maybe once a week) slurred my words almost exclusively at the end of a long day. Again, we attributed it to lack of sleep associated with me still grieving.

By February 2018, the slurring was apparently noticeable during the day by co-workers and I started feeling stuffy almost constantly and have a rough lower sounding voice along with the “wheezing and shortness of breath”.

By June of 2018, I found a new primary care physician and saw him with my list of symptoms and start dates. The breathing issues were listed as “adult onset asthma” and I was given pills to take. They didn’t help much. In July 2018, I was referred to an ENT doctor and a neurologist.

The ENT could find no reason for the breathing issues or the constant “stuffy nose” and “nasally voice”.

The neurologist ran blood tests, MRIs, EMG and other tests – nothing was found that pointed to the possible problem, although I had symptoms that could be seen and heard.

I continued to see the neurologist every 6 weeks for almost 6 months.

I was sent to a speech therapist in Aug of 2018, she couldn’t help me – she had never seen anything like the combination of speech issues that I had.

In Sept. 2018, family convinced me that maybe I was suffering from PTSD over the still painful loss of my twin brother- so with no other avenues to pursue, I attended weekly counselling sessions for six months.

2019 brought different paths to explore, My husband began to experience some of the same symptoms that I had; stuffy nose, numbness in the arms.  I had an infected tooth (possible link to speech- so I was told) we discovered mold in the house we were renting possibly the link to my symptoms???!!! We moved immediately and gave it a few months to improve- no such luck I was getting worse.

By Jan. 2020 my respiratory issues seemed to be slightly better but everything else was worse. I went outside of my insurance network and located a neurologist that I felt had the expertise to properly diagnose my medical condition.

On a side note, in December 2019, all my medical records were sent to the Mayo clinic, their doctors could not even guess as to what was wrong with me based on the tests that I had done during the previous 2 years. While we worked on getting approval for an appointment at Mayo, I found a neurologist outside my insurance network but still close to home that I felt confident in.

On March 9th 2020, I received the official ALS diagnosis. I am on Riluzole and Radicava, but the physical decline in the past six months has been frightening.

Had any of my previous doctors suspected ALS – I would have pursued treatment THREE YEARS earlier. But my testing didn’t show what they expected to see so ALS was crossed off of their list.

My current neurologist is on top of everything.

My ALS started with the respiratory then progressed to the bulbar onset was SO DRASTIC that the respiratory symptoms took a backseat and became more of a nuisance than the main focus. Finally the limbs were affected almost 2.5 years from the initial onset.

I’m sorry about the long post – but if it helps just one person to identify ALS earlier than I did – it can make a difference.

 

 

[chris-koch]

I’ll be getting a flu shot shortly. I have only missed getting it twice in 30+ years. The two years that I missed getting it, I ended up in the hospital with the flu for almost a week each time – and that was when I was young and healthy!

[chris-koch]

Ann,

I was diagnosed on March 9th 2020. I had in the back of my mind suspected something like ALS back a year prior and still I wasn’t prepared.

It takes a toll on you mentally – I am a 55 year old woman who has always been active and stayed in shape. I ran rings around my grandchildren and worked a very  physical job often 10 – 12 hours a day.

My ALS started with the speech – by this past Dec. I had a sore hip and noticed that I wasn’t walking “quite right” – I also noticed that lifting things especially over my head seemed more difficult.

Then in March I got the official diagnosis – I cried for almost 2 weeks straight (my doctor put me on an anti-anxiety pill to help with that) I became depressed and stopped eating regularly – I lost 5% of my body weight in 2 weeks- I thought about “ending it all” – I felt that I didn’t “deserve” to be using resources (food, money etc) that my family could make use of. I didn’t want to talk to or see anyone. I felt guilty having to place another burden on them. I was always the rock and the “doer” – now I was the one who needed help and that felt awful.

My husband was very supportive – he gave me space but never left me alone. He held me while I cried, he held me when I wasn’t crying. I have a very difficult time speaking so I have to use a device to communicate, it was texting or writing on paper – slowly about a month or 2 after my diagnosis, I was able to start sharing with him how I felt and what I was afraid of.

I still can’t share everything as it happens- I need time to process it myself – but the processing happens faster.

In 5 short months, I have lost the ability to pick up anything heavier than 2 lbs. , I can’t wash or brush my hair, often my hands shake and I can’t carry even a cup of coffee; but, I can still walk and drive and be independent – that is what I focus on being independent – if I can do that I will be OK.

We focus on what I can do – my husband reminds me of what I can do and seemingly instinctively steps in to assist with what I can’t do.

I found that writing my feelings and fears down helped. I could give them to my husband and we could talk when I was ready. Because I can’t speak very well – he is my voice with my doctors – so he knows what I am going through.

What you can do is remind him everyday that you love him and that you are there for him when he is ready to talk. My husband points out the positive items (last year we rented instead of buying a home because of a snag) he points out that it’s good that we waited- so we can look for something better suited to us now.

I still cry and have difficulty with all the changes happening- but now I try and share with my family. It takes time.