Glimpses (Inside the world of Multiple System Atrophy)

[@FightingMSA]

A huge thank you for making more MSA movies. This was hard to watch even for myself who is suffering from Multiple System Atrophy and have a 2 documentaries about myself and MSA. If you'd like check out Fighting MSA Austin Crawford's Story or Driven to Help. Thank You again for making the invisible, VISIBLE.

[@thesavagefilmmaker]

Thank you Austin and my best wishes for your fight. It looks like you are doing amazing inspirational things and I look forward to watching your work.

[@lisaraiexox_]

As a fellow MSA warrior- I say thank you 🙏

[@thesavagefilmmaker]

Thank you and keep fighting!

[@rickhayes3398]

My wife was diagnose with MSA in 2020 but symptoms were present in 2017. Now her condition has deteriorated to where she has trouble walking and talking. She is the most loving and honest person I have ever met. She is fighting and working at PT everyday to continue to have some quality of life. She has gone through cancer and won, a heart condition that was thought to require a transplant and won, but this is different. It's as if the gods, bent on destroying good people, have increased the anti and decided to play a game where they can't lose. MSA treatment has gone nowhere in the last 30 years. Good people are dying a horrible death. And let's not forget the caretakers who must sacrifice their lives and income to arrive at homelessness and aloneness. What a wonderful world.

[@thesavagefilmmaker]

Very sorry to hear. MSA is a terrible disease. Best wishes for you and your wife on this unforgiving journey. Enjoy all the things you can while you can.

[@christineibbotson1588]

@@rickhayes3398 I hear you - my mother had cancer twice and had overcome it. She was a very private woman and every vestige of dignity was stripped away in the care process. My father passed away due to the strain of looking after her. In the end she was in a nursing home. Covid hit and she was in isolation. My faith has been shattered as I try and come to terms with her passing. I find solace by knowing I was able to tell her how much I loved her and I was able to thank her for always being there for me. I’m sure Rick your wife knew how much you loved her and felt comfort and strength. Hope you find peace knowing you did everything you could.

[@Gary-y1e]

Has she tried a diet change?

[@amdr90s]

@@Gary-y1e I hope this is a (very bad) joke.

[@raquelt4899]

Hi. Do you think there is a connection to your wife having gone through chemo and now having MSA? One Neurologist told my husband that chemo can send your body's immune system into overdrive. I swear there has to be a connection as my husband also did chemo for colon cancer and now has MSA-C.

[@SuziGeorge-nw2bi]

Thank you for making this so others can see what a beastly horrific disease this is. I’m still not ok after losing the love of my life to this.

[@thesavagefilmmaker]

I'm sorry to hear about your loss Suzi, it will never be okay, but we can remember and celebrate the bravery and courage of those we've lost.

[@Sandyhennessy1]

Thank you for sharing and getting the information out about MSA. I lost my husband 5years ago to this disease. Such suffering this causes. Not only physical but emotionally also.

[@anamegoeshere]

@@thesavagefilmmaker no you dont care about ur uncle you care how famous this will make you one day and its about the $$$

[@thesavagefilmmaker]

Money, or fame mean absolutely nothing when compared to the loss of a loved one. This film was made to celebrate my Uncle's life, his perspective and document his battle with MSA. I made it for him, not for me.

[@katebloor7933]

Thank you so much for sharing this...we have a family member who has been diagnosed with this 6 months ago and whilst we can't cure him it's so so helpful to understand better and be prepared ❤

[@mirandafarris6834]

Thank you for making this! Visibility is our greatest strength when dealing with this beast of a disease. I lost my mom in 2021, 9 months after her official diagnosis. Sending love from the US!

[@thesavagefilmmaker]

Thank you and best wishes. Very sorry for your loss.

[@BoristheBlade]

What a truly incredible and humbling documentary. Your family is very lucky to have such a talented filmmaker like yourself to make this for them and tell their story. And I'm sure being able to watch this over the years will help Rita come to terms with such a difficult period of her life.

[@thesavagefilmmaker]

Thanks Ben, appreciate your kind words.

[@PoetSkyMSA0227]

4 weeks ago I lost my partner to Msa . He was 71 and suffered 4 plus years . I miss him with a pain that can never be described .

[@thesavagefilmmaker]

So sorry to hear about your loss and the fact he had to endure this terrible illness. My condolences.

[@katycauchon902]

My husband has MSA type C…..your documentary has show me the strength of this family . I don’t know how long it is gonna be for my beloved husband of the last 33 years, but I hope i will be as courageous as Kate…my name is Katy and I will face this as good and brave as I can. My sympathies to this family

[@thesavagefilmmaker]

Thank you for your kind words Katy. And best wishes for you and your husband on this incredibly difficult journey. I'm sure your courage and strength will be what you both hold onto and appreciate. I hope you're seeking and finding support through the places like the Defeat MSA trust and healthcare system.

[@wendiesioux]

Thank you so much for sharing your thoughts on this film. I saw the screening last year during the defeat MSA annual conference and was moved by your poignant story telling. Thank you for sharing Gregory's story; your uncle was a remarkable, intelligent man, gone too soon. My husband was diagnosed with MSA last year and I think it's important that we all share our stories.

[@thesavagefilmmaker]

Thanks Wendy, I'm sorry to hear about your husbands diagnosis, best wishes for you both and I agree, lets keep sharing our stories.

[@KatjaHelsinki10-nz6ph]

I also thank for this documentary from the bottom of my heart. We need more knowledge to ourselves and to the general public.

[@thesavagefilmmaker]

Thank you for watching.

[@ssballurkar2551]

Very much felt like our story too and touched our hearts. The same journey and similar timeline for us too. Felt like you have given voice to many silent MSA sufferers all over the world. This documentary will bring the silent and lonely MSA stories out of darkness to be shared and understood by many. Thank you

[@thesavagefilmmaker]

Very sorry to hear about your story. Best wishes to you and your family. Thank you for watching.

[@pinang1]

Watching it was an extraordinary experience and very moving. I'm sure Gregory would love the film as well. What made it even more valuable is that you literally gave him a voice here (and a really good one as well). It's amazing and eye-opening that his mind is still so sharp while the rest of his body is of no use. You can think the deepest thoughts and ideas but you cannot move your hand. Usually it's the opposite in life. Most people are very able to do anything physically but they don't use much of their brain. This narration is so important to show us that this is not just a body handled by nurses (as many people would probably see it without the Gregory's voice) but there is a bright human being trapped inside of it. And his family was so loving and dedicated. I imagine for most of the people it would be too much and they would arrange for a family member to be taken to some kind of a care home to avoid that burden but Gregory's family is amazing. I cannot even imagine how their lives were changed and how much they had to sacrifice. Such an important message at the end from Gregory. Great work

[@thesavagefilmmaker]

Thanks so much for the thoughtful comment, I'm glad you got so much out of it, Gregory's family was amazing as was he, incredibly brave and resilient.

[@Seus1111]

Thank you so much for spreading awareness and letting us have a glimpse at your uncle Gregory’s live. MultiSystemAtrophy is a horrific and cruel disease for one suffering and their loved once.

[@thesavagefilmmaker]

Thank you for taking the time to watch.

[@christineibbotson1588]

My mother had MSA and this is such a cruel disease. So very brave of Gregory and his loved ones to share his journey. My thoughts to all who are suffering from this and their families.

[@thesavagefilmmaker]

Thank you and my condolences, and best wishes for you and your family.

[@DynamicUnreal]

I’m 2 and a half years in at 37 years old. I have some of the symptoms but not all. Some of the symptoms have gotten slightly better (hand tremors and pins and needles) and others have gotten a lot worse (autonomic dysfunction, dysphagia, fatigue). That fluctuation in symptoms gives me some hope that it may not be MSA. I have young children that still need me.

[@thesavagefilmmaker]

Best wishes my friend. Keeping my fingers crossed, be there for your family. The world needs you too.

[@DynamicUnreal]

@@thesavagefilmmaker Thank you so much! You don’t know how much those words mean to me.

[@TheDifferenced]

Sorry to hear and I too have autonomic neuropathy at age 28. I am so scared right now and hopefully this isn't MSA :(

[@DynamicUnreal]

@@TheDifferenced Even younger than me. I feel for you. Sometimes the symptoms get so bad that I feel like I’m on the verge of death. I pray that it’s not MSA for either of us.

[@kerstinesbjornsson3428]

Thank you so much for sharing 💕 (I was diagnosed last year)

[@thesavagefilmmaker]

Best wishes on your journey. I hope you're surrounded by a great support network and friends and family.

[@kerstinesbjornsson3428]

@@thesavagefilmmaker 💕

[@scoutgoldenretriever6748]

Thank you for sharing your story and experience first hand with MSA. My father too has this unforgiving disease.

[@thesavagefilmmaker]

Best wishes to your father and your family.

[@Bo_Hazem]

Not sure if I done it wrong, but I watched this video then going to watch the film now. You provided precious knowledge about how to make it by yourself as a one-man-crew indie filmmaker. Thanks a lot for all your efforts.

[@thesavagefilmmaker]

Glad it was helpful my friend and thank you.

[@thesincitymama]

I wonder how very different it is for patients who live in countries where such a high level of care is unavailable or unaffordable.

[@qfoil]

I have just got myself to watch this film. I knew it was going to be hard but It's just heart-wrenching. Thank you for giving your uncle Gregory the voice that was taken from him. Thanks to uncle Gregory for this message for everyone, for having the courage and selflessness to release it into the world. Through this happening of circumstances including that his nephew is a filmmaker this message was born. Raising the awareness is extremely important. But it is also important for those who will not have anything related to MSA in their lives - a reminder to be thankful to be alive and well, to be here in this very moment with their loved ones. This doesn't help my existential dread but increases my appreciation for the life I have tenfold. Thank you, Guy, best of everything to you and you family, cherish the warmest memories you all have!

[@thesavagefilmmaker]

If it increases your appreciation for life ten fold, I think that's a hell of an endorsement! Certainly something I think about often. Thanks for watching Alex and taking the time to let me know your feelings on it.

[@Hobchild]

Fantastic docu, a real eye opener of a disease I didn't even know existed until I watched this.

[@FightingMSA]

I have the same illness and have 2 documentaries called Fighting MSA Austin Crawford's Story and Driven to Help (Now on Tubi)

[@Hobchild]

@@FightingMSA just watched the trailer. Will watch the docu over the weekend. Thoughts are with you.

[@heide-raquelfuss5580]

I see multiple nutrient deficiencies, like in cattle, over a prolongued time. Diet, diet, diet and what you eat and do not eat. Could it be? My gut and instinct tells me yes. Very sad. Look also up>youtube Could it be B12?

[@thesavagefilmmaker]

I’m afraid it has nothing to do with diet, MSA doesn’t discriminate, you can try any diet in the world, this is neurological.

[@joeynarciso94]

NO!