Huntington’s Disease is a grim condition. It’s fatal. It doesn’t have the same public profile as Multiple Sclerosis or other conditions, but it’s a true life-changing, dire condition. Mobility is impaired severely, and every day is hard work for Erin.
The conditions includes seizures, difficulty with basics like eating, and a range of related issues. Anything involving mobility is an issue. Pharmaceuticals don’t do much.
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This quote from the Huntington’s Society of Canada is indicative of the current state of research:
…there are no treatments which can stop or slow the course of the disease at this time. However, there are medications that help alleviate some of the symptoms. Developments in research have given rise to tremendous optimism that new treatments will soon be within sight.
Note the “alleviate” issue. “Alleviating” means making the days a bit more bearable. Given that current medications don’t seem to do much but manage symptoms. The bottom line here is that most treatments are palliative or symptom managers, not “treatments” as such.
If you’re somehow getting the impression that anything which has a positive possibility is an option for families trying to cope with the situation, you’re right. Like many people, Erin’s mother, Cindy, was prepared to give cannabis oil a shot, and it worked.
Why is this so incredibly important?
Because it overturns the pathology of a major, particularly brutal, disease, that’s why. I’ve never heard of anything which could deliver mobility like this.
Cannabis oil is best known in the media as a pain medication for people with chronic pain, MS, etc. It’s definitely not known as a “reviver” of complex motor functions in people. Even the most passionate advocates of cannabis oil haven’t claimed it can restore functions which these conditions destroy.
Why does cannabis oil work in this way, particularly on this disease? This is no game show; people with chronic Huntington’s can’t “pretend” to be suddenly better. Erin has an advanced case of this disease, which keeps her in a wheelchair. She’s had it since she was 17, and the condition has advanced since then.
How does cannabis oil generate mobility, with active conscious control of mobility, in someone who is usually stuck in a wheelchair with more basic motor skills issues?
I have to say I was stunned when I saw this. I’m all in favour of anything which reduces suffering, but as a journalist, I need to see some hard facts. I’d seen a friend of mine for the first time in 20 years on TV, saying it helped his MS. My friend isn’t exactly a shrinking violet, and he made the point that it was great for pain. I knew a lot of other people said it was a good option for many conditions in that regard.
Nobody, however, has ever said a word about restoring body functions. That’s critical. The “mere” act of standing up involves balance, coordination, neurology, muscle group control, and a range of functions which Huntington’s sufferers can’t take for granted at any time. Walking is even more complex. Yet there was this young lady, standing up and smiling?
Through one of our DJ regulars, Kevin Jess, who’s had his own experiences with Huntington’s, I asked for an interview with Cindy Moore, Erin’s mother. It’s an eyeopener.
Please note: This is the voice of experience. If you want an inspiring, not to say stunning, insight in to how people cope with a hellish disease in the family, expect the totally unexpected. Fortunately for me and the readers, Cindy has gone to great lengths to spell out the issues and problems. She’s also mapped out the whole condition and the cannabis oil approach to management very clearly.
Interview
Can you give us the medical background to your video?
Erin suffers from Juvenile Huntington’s Disease. It is a fatal disease. Your life expectancy from onset of symptoms is approx. 10 years for Juvenile. Adult Onset is a little longer, could be 20 to 30 years, but you certainly do not have quality of life. Erin’s Dad passed away for Huntington’s at the age of 53 as well as her Grandmother who was in her 70’s. Any children born from a parent with Huntington’s disease has a 50 % chance of getting the disease. In my case I had two children with Erin’s Dad and they both tested positive. Erin has the Juvenile form of the disease, and my other daughter does not have symptoms as of yet, but will experience the adult onset of the disease at some stage of her life.
Erin and I have been at the forefront of raising local awareness about the debilitating effects of Huntington’s Disease.
We do many charitable fundraisers to raise money to help find a cure and teach people about this horrible disease.
“I want to do it so I can help find a cure,” Erin said, in a halting speech pattern caused by the neurological condition – specifically Juvenile Huntington Disease in her case – that was diagnosed when she was a 17-year-old student at Brockville Collegiate Institute.
What is Juvenile Huntington disease?
Juvenile Huntington disease is a form of Huntington disease (HD) that affects children and teenagers. Huntington disease is a hereditary neurodegenerative disorder that is characterized by progressively worsening motor, cognitive, behavioral, and psychiatric symptoms. JHD is caused by a mutation of the Huntington gene called a “CAG repeat expansion”. The mutation results in gradual neuronal degeneration in the basal ganglia of the brain, which is responsible for coordination of movements, thoughts, and emotions. As JHD progresses, other regions of the brain undergo neuronal degeneration with diffuse and severe brain atrophy that is comparable to late stage Alzheimer disease.
What are the symptoms?
Presentation of JHD includes changes in personality, behavior, coordination, speech or ability to learn. Physical changes include rigidity, leg stiffness, clumsiness, slowness of movement and tremors. In comparison with adult HD, seizures and rigidity are common, and chorea is uncommon.
Predisposition and typical initial symptoms of Juvenile HD include:
• Positive family history of HD, usually in the father
• Stiffness of the legs
• Clumsiness of arms and legs
• Decline in cognitive function
• Changes in behaviour
• Seizures
• Changes in speech and swallowing abilities
• Chorea in an adolescent
• Behavioural disturbances
Onset and Progression
JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. Death often occurs within 10 years of JHD onset, as opposed to 10-25 years in adult onset HD.
The adult form of the disease took the life of her father Dave Wade at the age of 53 and the juvenile equivalent has brought on a physical deterioration that has left Erin reliant on a wheelchair and the help of family, friends and caregivers to live life as normally as possible.
She stays active to fight further physical deterioration by working out with trainers at the Brockville and District YMCA, while keeping her mind nimble playing games of chance and cards with friends, where she has gained a reputation as a fierce competitor.
Erin’s big bright eyes, constant smile and steely determination have also been an inspiration to loved ones and supporters of fundraising efforts initiated by myself, that include pie-in-the-face challenges, bowling nights and a chilli cook-offs, Elvis Show and quite recently the first Canadian Walk for JHD.
Her reputation has also spread to the national organization, as well as USA We Have A Face, the United Kingdom and Germany. She now has renowned scientists and doctors that chat with her and myself, giving advise and working diligently to find a cure for this horrible disease, known as the *Devil of all Diseases”
We started the pie-in-the-face challenge which quickly spread across Canada with several people taking part and posting videos which can be seen on You Tube.
Last year Niagara Falls was lit up in Blue and Purple in Erin.s honour to celebrate her Birthday!! They lit up both the Canadian and American Falls and it was truly spectacular!! We took her for supper to celebrate and everyone in the restaurant sang Happy Birthday to her!! It was truly a beautiful moment!!
Despite her struggle, Erin lives every single day to the fullest,
You can see it in her eyes, dancing with life and laughter. It’s impossible not to be inspired by her. We do so much to raise awareness, to educate the Huntington Disease community and To give hope and inspiration to many around the world.
Erin never gives up, She always tries, She is an inspiration to many who meet her, She never complains.
Erin started to show symptoms at the age of 17 and slowly progressed. She is now in a wheelchair but continues to try every day. Her speech is slurred and she suffers from Seizures. Her mind is perfect, which is a blessing as so many suffer mental issues as having JHD and HD is like having ALS, ALS, Parkinson’s, Alzheimer’s, Bipolar disorder, and Schizophrenia – all at the same time. Simply, this disease is not a one-size-fits-all disease.
Erin always wanted to have a large family as she loves children so much and those dreams and hopes have been dashed by this terminal disease, but she does not let that get her down, She loves children and animals and they love her back.
Erin was accepted into two drug trials, but after the first appointment our hopes of the continuing were gone. The first time she had a Grand Mal seizure they would not let her continue. The second time they said she could not continue as she was taking an injection for her Ulcerative Colitis which lowers the immune system. The drug she would have received in the trial would do the same thing and it was not safe for her to be on both.
So once again we are at a standstill and work with what we can to help keep her stable. So far it is working, but if a cure is not found, I do know that I will lose her eventually! That is not something I can bare to think about right now.
How did cannabis oil affect Erin, and for how long?
Recently I have put Erin on Cannabis Oil and it showing improvement for Huntington Disease. This is legal now in Canada and is now legal in all 50 states, I am not sure about the other countries. I got a prescription for Erin and started her on the oil as well as vaping. There are many different strains. Some have a high THC content which gives you the typical high, and others have a High CBD content with no THC. Erin is on the oil with the high CBD content. There is no high. It has given her back some of her abilities to stand, shaking has stopped, Speech has improved as well as being able to eat without choking.
What degree of mobility does Erin have normally?
Erin is in a wheelchair. She could stand and take a few steps until recently she started getting worse. Then I started her on the oil and the effects were incredible as you can see from the video. She can now stand again, take some steps, sit up . It is a huge improvement.
How are you managing the situation? Are you receiving adequate support?
It is very hard indeed, to watch your child slowly dying. This is the only thing that has given me some hope. I do receive tons of support from family and friends and my community. Because of my advocacy I have met James Valvano (Founder and President of WeHaveAFace.org Global HUBS) and his family. I am the Director of Business Affairs for Canada, and work with the organization to help people around the world. As an organization, we have made the decision to create an non-profit HUB in Brockville in 2017 – WeHaveAFace.org Canada. We must help as many of our patients and caregivers as we possibly can. WeHaveAFace.org Canada will fill in the gaps which currently exist and to provide additional supports in this country. For more information visit: www.WeHaveAFace.org
We will also do everything we can to help fund the Juvenile Huntington’s disease stem cell program via Dr. Jan Nolta and Dr. Kyle Fink at UC Davis in California. This is the link to their stem cell program:
What effect have conventional meds been having?
There are no drugs for this disease only ones that help with chorea but Erin does not have Chorea, as this is not symptomatic in Juvenile Huntington’s Disease. Erin does take seizure meds which help control her seizures, but they do not always work and she continued to have seizures, until I put her on the oil.
Have you been offered any medical options for improving or alleviating the condition by your doctors?
No, nothing as of yet. I felt like I had to do something myself. Cannibis is expensive and it is not covered by insurance, so we have to pay out of pocket for it, but if it works than it is well worth it. I will do whatever it takes! This is why I have chosen to do these two videos and get the word out to show people the difference this oil makes. The videos were taken a couple of days apart and the improvement is nothing short of a miracle.
A challenge for science
OK, here’s a job for real scientists: WHY DOES IT WORK? I’m not a neurologist, but I would say that anything which can restore motor function is a super-high-priority for medical science.
There may be genetic switches to turn off the offending genes which cause Huntington’s. Stem cells may work. There are any number of good options which should be getting fast tracked.
…But… The point is that cannabis oil works, here and now, to achieve such extraordinary results. Here we have a truly unusual phenomenon; a chemical method of restoring motor function? It’s astonishing. This could help millions of people, in like the next week or so, if the process is properly understood. You could derive a medicine from cannabis oil which could make life so much better for so many people.
Postscript: If cannabis oil’s active constituent, a big tough molecule called THC, can deliver normal functions, it may also help offset the degenerative process. A derived compound, taken as a tablet, could be the home run that turns the tide. Big molecules like THC take their own sweet time breaking down, meaning “sustained release” is an option.
One of the major issues with this condition is that it freezes functions which maintain health, too, like neurological functions. Restoration of normal functions, without the “instant off switch” of the condition, might well be a step to actual recovery.
