ALS and Huntington's Disease

This week we're talking about some of the deadliest diseases and what it's like to die from them. We're going to be talking about ALS (amyotrophic lateral sclerosis) and Huntington's disease

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[karenbortolin]

ALS is the most horrible disease. My brother-in-law was lucky due to the fact he passed just 18 months after being diagnosed. He was a very intelligent man, an engineer, a musician, a husband and father. He handled this with dignity.

[KathyFrost-vs]

Huntington disease is the most cruelest disease known to mankind . It is the combination of ALS, dementia, Parkinson’s wrapped up together 😢, my father in law had it, now by brother in law, and 5 months ago my 28 year old niece has HD . It is so heart breaking to watch them decline and no cure .. 😢😢😢 thank you Julie I have been following you for a few years and you have given me so much knowledge and comfort ❤

[yettykitty]

For those with loved ones suffering from ALS, I highly recommend the book “tuesdays with Morrie” by Mitch Albom. It was required reading for my son in 5th grade so I read the book too and cried my eyes out. Morrie gives good advice on how to accept the disease and how to not fear the episodes of not being able to breathe. What a strong man. True story. Thanks to Morrie’s friend, Mitch for writing such a detailed account of life lessons and what it’s like to live with this disease. My son is now 23 and still has the book. It left a big impact on him. He’ll always remember Morrie, and so will I…

[anniepette]

As a psychiatry nurse a have taken care of Huntington patients. I will never forget it. It is living hell and torture.

[adria]

ALS is genetic on my mother's side. We have lost a dozen family members so far. It is a horrific disease. Hospice nurses have been angels for everyone who has had one. Thank you Julie for doing this line of work.

[psychoagY]

I lost my Granny to ALS 2/10/99. ALS is a horrible disease and I miss her everyday!❤
I wanted to add that she had strange symptoms for 3 years and underwent countless tests and the dr’s couldn’t figure it out. When they finally diagnosed her with ALS, she passed away 6 months later. I’ll never forget how caring the hospice nurses were. They even came to her funeral.❤

[debwoods]

My husband has Huntington’s. He was able to walk unassisted with a walker until January, after a knee replacement. He was in the hospital three times and nursing facilities three times until the end of March. He’s not able to walk unaided, but he’s doing great! September will be seven years of marriage for us. The first two were the worst experience of my life. I left for fourteen months. Things were a little testy when I first came back, but now, he’s the sweetest and l feel privileged to be the one who is helping him have a good life.

[cindyn]

Recent studies are indicating up to 50% of ALS patients do suffer mild to moderate cognitive/behavioral impairment and up to 20% suffer from full Frontal Temporal Dementia. My husband was part of that 20% before this was known, and it was hard to find any medical professionals to address the needs that come along with it. I could see it as his wife and full-time caregiver, but kept hearing how ALS doesn’t affect intellect and cognition. It often does. Caregivers need to be educated and prepared for the possibility. Beyond heartbreaking.

Thank you, Nurse Julie, for making such important information so accessible! My mother is currently in hospice and what you do is Godsent! Bless you!

[Katsterful]

Thank you for this video, Julie. My Mum passed away very recently due to aspirational pneumonia because of her Huntington's Disease. I'd watched your videos to help me prepare for the inevitable ending my family and I knew was coming. I don't think the hospital she was in (in the UK) was geared up for dealing with Huntingtons Disease patients, particularly on the anxiety and emotional issues side of things, but they absolutely were there with medication at her end of life. Mum was on oxygen right until the very end and had her medication given on a small pump in her leg to help with her pain. My Mum was diagnosed in 2010 and sadly left us mid Dec 2023. I've been tested and have a regular Huntingtons CAG repeat, so I'm very very lucky 🙏

[beccaboutin]

Thank you for bringing awareness to ALS I lost my Dad to that awful disease in 2019 and took care of him until his last breath. I will never forget how horrific it was in just 3 short years before his diaphragm was compromised due to the muscles dying. He would have suffered tremendously without hospice care and so thankful for the nurses taking care of patients and the family during the darkest times. 😢 He eventually had to be fully sedated 2 days before passing Because of the terminal agitation

[highridgemom]

My brother died from ALS in 2017. It's the worst disease that anyone can be stricken with. He had a brilliant mind and it was trapped inside of him. He and his wife were pharmacists and she took care of him from diagnosis to death - which was 16 months. No hospice nurse. People have told her to write a book about her experiences in caring for my brother because she was so knowledgeable about everything. She had to take him to the hospital on one occasion and actually had to demonstrate to the medical staff how to use a hoyer lift because they didn't use it often. The doctor thanked her later.

[sarahe]

ALS is awful. I was thankful for Les Turner. They didn’t help just the patient and family but it helped me as the nurse. I was only in my fifth year and quite new if you ask me. I had my first ALS patient in 2013 and there was a crap storm in the family due to the disease/stress. The poor kids were teens and were expected to help so much. I was humbled and realized how much foundations like Les Turner is needed for families and patients for ALS. HECK, they even supported me.

[diandian]

Hi Julie, I have been a Hospice nurse since 2013. My fiance tried to get me to subscribe to this channel and I never did until this week. So glad I did, because I see now that you come from a position of knowledge, professionalism, experience, and compassion. Thank you for such a great channel. Keep up the GREAT work!

[nataliehuntfox]

My best friend died of ALS. It was awful but she had the best attitude

[tayloronan]

Thank you for making a video on Huntington’s disease. My mother has it, and my grandfather passed from it. There’s a 50% chance me and my siblings will have it as well. It’s not very well-known, and I wish it was talked about more. I hope and pray for a care, one day, and one way to make that happen is to spread awareness of what it is.

[RockinStacy]

My husband has MS and at first they were talking about ALS. I honestly thank God that he has MS in comparison to ALS or Huntington's. Huntington's is like having ALS, Alzheimer's and Parkinson's simultaneously.

[HurricaneScully]

I remember going into hospital unable to walk and having weakness/tingling etc. I 100% thought I had MND (ALS in America). I never thought I'd be thankful to have Multiple Sclerosis. Thanks again for all of this information

[coolbreeze]

Thinking of Stephen Hawking and how he lived for 55 years with ALS. Having a strong and active mind but living in a shell of a body. It's amazing how he was able to accomplish so much and fought to live for so long.

[shut]

Thank you Julie for your education and honesty regarding these health issues that plague so many.... Knowledge is everything so that people can make informed choices about how they live and die

[sheHerTheyThem]

As someone who has Huntingtons Chorea so much in their family I've lost 3 aunts &last count 16 cousins of various degrees to it in my 54 years of life.1 aunt died in her 30s after a mere 10 years of having it, another died at 93 after being diagnosed &living in a nursing home since she was 46.i haven't been tested, I already tested positive for CHEK2 &lost both parents &my sister to various forms of cancer..I'm already doing enough testing.