Looking forward to a Bright Future for Pompe Disease

By Federico Mingozzi, Ph.D., Chief Scientific Officer, Spark Therapeutics

I’m optimistic about the future of Pompe disease, or better yet, a future without the devastating symptoms of Pompe disease. (Federico Mingozzi)

Today is International Pompe Day, a global awareness day shining a spotlight on a rare genetic disease that affects roughly one in 40,000 people in the U.S. The International Pompe Association, which sponsors today’s activities globally, has issued a call-to-action to inspire others by how the community is “Moving On with Pompe.” I, for one, hope to inspire the Pompe community and other researchers to “move on” to a bright future for Pompe disease patients through research.

Read more on the website of Spark Therapeutics: http://sparktx.com/voices/looking-forward-to-a-bright-future-for-pompe-disease/

Pompe: Silver Linings

Hello Everyone my name is Ellen,

I was diagnosed with late onset Pompe Disease in late 2018. Like many others I had been misdiagnosed, and traumatized by testing and guesswork for years. Once I finally knew what was making me so weak, and all my abnormal results finally created a full picture, I looked immediately for what I could to move forward and what the positives could be. So I'm going to share what keeps me going. First the silver linings on Late Onset Pompe.

1. One thing I learned and probably the biggest light in our lives collectively, is that there is a treatment to slow the progression of the disease. There is no trial and error, we need the enzyme that our body lacks re-infused into our bodies on a bi-weekly basis to maintain our abilities and our lives depend on it. There are many neuromuscular diseases that have no treatments available, we are lucky, even though it is hard to feel that way on many days. Even more light at the tunnel, there are progressive treatments being developed like gene therapy!

New Born

My name is Guo Penghe. When I was young, my physical education class never passed. When my friends were happy to dance rubber bands and kick sandbags, I could only look far away. I thought that one day, I can run like them, running very fast, jumping very High... I am very puzzled, why am I different from others? Until 2014 I was diagnosed with glycogen storage type II (Pompe disease). But the story I want to share must start from just getting into college.

In September 2007, I came to the university. I didn't expect a lung index to be "abnormal". I received a call,  "Are you Guo Penghe? I am Tian Xiaomeng, we have to get the pneumonia vaccine together." So there are only two unlucky person in the class taking the bus to get the vaccine together. Gradually, I and Xiao Meng are getting more and more familiar. One day, he rode the red broken car and asked me to go out. Then he actually showed me! What! I didn't think about it, I refused. However, later, we are still together.

Pompe in my life

My name is Guo Pengfei, 35 years old, a Pompe disease patient in Hebei province, China. “Pengfei” means bright future. I grow up in the countryside, realizing that the life is tough for the rural people. I wanted to change my life.

Because I didn’t know that I had a rare disease when I was a child, I just feel that I am always weaker than my peers, and the one who was bullied in the children. My living condition was bad, I couldn’t eat meat even once a month. I remember that the first time I ate banana, it seemed to be the fifth and sixth grades. When I was in my teens, I want to make money by myself. So in the hottest summer, I went to the cornfield to dig wild herbs. I climbed trees to collect cicadas to sell. I felt that I had to work on my own hands. In the busy season, I have to cook at home and wait for my parents to come back from the field.

I still have social value!

My name is Gong Xuemin. I am 32 years old. I am a nurse, a Pompe patient. I have been working in clinical work for 8 years. In these 8 years, I hold the principle that all patients deserve best treatment. I thought that I would always work like this in my life.

However, the reality is cruel. In 2017, I was diagnosed with Pompe disease, a disease that affects the whole body muscles and multiple organs because of the accumulation of glycogen. It is a rare disease. Since the onset of the disease, I went to the hospital of county, city, province, capital, finally diagnosed. During this process, the whole family has suffered, facing the misdiagnosis of the doctor, the critically ill notice, making my whole family bleak. On the day when I was diagnosed with a rare disease, my family were heavily in debt. Soon after, my brother was also diagnosed with Pompe disease, and the whole family fell into sorrow. This is not the end, but it is the beginning of another challenge. I am weaker and weaker every day, I can’t run, can't breathe at night, even sleep with the ventilator. Can’t lift my legs, can’t climb the stairs...... but I do not give up hope for life, I want to be strong.

Together, we are stronger!

My name is Li Wenwen, I have 5 young brothers and sisters, and come from a family of Pompe's patients in Jining, Shandong, China. In 2011, 3 of 5 family members were found to have Pompe disease, which is unfamiliar to many people, including doctors and experts. It is like a curse. Let us become weaker and weaker. Pompe's disease have efficient medicine, but it is too expensive. We and most patients only wait to die!

The curse has never disappeared. My parents spent all their savings in order to take care of  us and owe more than 400,000 debt. From diagnosis to now, my family lost a lot but also realized a lot. The suffering of life does not let us give up but let us become more and more brave. We accepted the challenge that God gave us. Beginning with the fear of this disease to understanding; and then to fight with this disease every day; our body changes all the time. Our muscles are weak, we no longer walk and jump normally; we don't breathe big breath; we can't go up the stairs; we can't bend up......our body is obviously degraded in 8 years. The functions of various organs of the body have gradually weakened. We don't have the strength to breathe, and we are accompanied by 3 ventilators every day. A lot of things that people treat it as normal, but are impossible for us!

Working on acceptance - living with Pompe

My name is Linn. I am a 35 year old woman from Norway. I am married and have two beautiful girls age 5 and 9.

I was diagnosed with Pompe's disease for approx. a year ago after several years of struggle to find out what was wrong with me. From being a fulltime working mother of two, to barely being able to walk, has been extremely tough, and I'm not even close to acceptance. But, it does (hopefully) come with time. But, over time, more "flaws" in the form of less and less functioning muscles, more and more reduced breathing capacity and more pain and more aids also come. So acceptance never feels closer, rather the opposite. But, now that I open myself up to say, "I have Pompes" - may suggest that I have actually come a little further with this acceptance 😉 I try to take the days as they come and are extremely grateful for all the wonderful people I have in my life - you lift me up and make even the worst days worth everything ❤️

I have Pompe, Pompe doesn't have me

Hi my name is Sean Kelly. I am 44 years old and live in Long Island, N.Y..  I was diagnosed in November of 2016 with Pompe disease after approximately a 10 year journey to find out what was going on with. I started to notice something was wrong when I began having problems going up stairs as well as having problems standing after sitting in a chair or anything that was low to the ground. I, like most other adult Pompe patients, went to several different Dr's and had dozens of test done before finally finding out that I had Pompe. I will never forget when I received the phone call from my Dr telling me they finally figured out what was going on with me. I went through a whirlwind of emotions, first I have happy and excited because after all these years I finally had a diagnosis and knew what was going on, then I was scared because I didn't know what to expect and didn't know anything about pompe. I then decided to do some research and turned to Dr. Google, and read the article that probably every other Pompe patient has read which states we will die within 3 years of being diagnosed. I immediately began to cry, thinking of my family and how would I tell them the news. I became depressed at first but then finally met with my Geneticist and spoke about ERT and felt a little more positive about things. I decided I wanted to learn as much as possible about this disease and educate people about it and bring awareness to it. I have found that there are very few Drs. that know anything about Pompe, some or more open about it and admit they don't know about it, but I have found a few that because of their ego will pretend they know about it but really don't. I have done walks to try and raise money to help find a cure Pompe. I continue to try to advocate for Pompe as much as possible to raise awareness.  They say that Pompe disease is extremely rare and it effects 1 in 40,000 people, but who knows how many other people are out there with Pompe and aren't aware. I may have my days that I feel horrible and am in pain but I never feel too bad to advocate for Pompe. I may have Pompe, but Pompe doesn't have me.

Moving on with Pompe

Since my diagnosis in January 2014 I have had my ups and downs, times where I have felt so worried about my future but also moments where, because of my disease, I have realised how strong I can be. For me living with Pompe is about focusing on the present, concentrating on the things I can do and not getting frustrated with what I can no longer do. My legs are my weakest muscle and no matter how frustrating that can be I still go for walks, attend a gym, socialise with friends, attend Military functions where I am standing for 1-2 hours, (no mean feat when you’re legs feel like jelly), keep up with the kids, and clean a house. I am also an advocate for Pompe, especially in New Zealand where we are still fighting to get treatment. I have had the privilege of meeting other Pompe warriors along the way and it always amazes me at how strong everyone is. It is a mental journey as much as a physical one and being able to accept it and move on and enjoy the now is so important. Happy Pompe Day!

Samantha Lenik
Vice President, New Zealand Pompe Network

Living life

Life with a progressive disease is possible. A positive attitude, support from family and friends, the Neuromuscular Centre in Cheshire, supportive Consultants and the right equipment. It is what you can do that counts ... Pompe or not! 😊

Andrea Duckworth, aged 51, England 

Moving On in Our Own Time

I was diagnosed with Pompe disease when I was 11.  It shocks me sometimes when I think about the fact that I have known I had Pompe disease for over 24 years now (I'm 36).  The "before Pompe" part of my life will always be 11 years., but the "after Pompe" part is going to continue to grow–hopefully for a really long time J

When I was diagnosed in 1995, I was still able to walk, and honestly didn't really realize there was anything all that wrong.  From my perspective I was just a klutzy bookworm that was bad at sports.  The year after my diagnosis was a big change–I hit puberty shortly after I was diagnosed and my symptoms rapidly progressed.  By the time I was 16 I hardly left the house, was in a wheelchair, had severe breathing problems and scoliosis.  I was very fortunate to be in the first enzyme replacement therapy (ERT) trial in the Netherlands–without a doubt in my mind it saved my life.

It also gave me back my life.  To get a little introspective, when I left the US to participate in the trial I was a child.  I was 16, but I was a child.  I had become very shy and had lost touch with all of my school friends.  With the exception of a few very close family friends and my family (both immediate and extended), I really didn't interact with people that much.  At that time I was still trying to cling to being "normal"–I didn't want to be seen with my bipap on by anyone but my parents and siblings, I didn't want to use a wheelchair. Instead, I chose to stay at home or really only go places where I didn't have to walk more than 50 feet or so (and that with a lot of help).

Cheerful and resilient

Having lived with Pompe in our lives for nearly 30 years; we have always been proud and grateful to have a son who has constantly moved on; taking many of life's challenges in his stride. This is the text of a school announcement at the age of 15:

The recipient of this year's award is a young person who has impressed everybody around them by their chearfulness and resilience in the face of illness and continual hospital treatment from a young age.

Coming to Bohunt School in Year Seven, concerns were expressed about how this pupil would cope in such a large and jostling environment. No one need have worried. This young person slotted right in, taking a full, active and independent part in school life and becoming a popular and respected member of the tutor group.

Last year, this pupil underwent a serious spinal operation, resulting in a long stay in hospital. On top of this, additional medical complications have meant regular treatment in The Netherlands and London, to test a ground-breaking new drug that could help others in a similar situation.

Throughout these difficult times, this person has never been anything other than cheerful and resilient. Never have they made an issue of their medical problems, nor used them as a reason for school work to suffer. Rather, they have faced up to daily life with unfailing cheerfulness, politeness and courage, supported by the tutor group and being a caring and supporting friend themselves.

In recognition of their courage and zest for life and school, I am proud and delighted to announce that this year's Rosemary Kermode Trophy is awarded to Jamie Muir of Year 10s.

And we remain very proud!

Allan and Barbara Muir, UK

My Family

My Family keeps me strong

Andrew Jackson, England, Aged 50

Keep moving with Pompe!

How does my life look living with Pompe?

It looks difficult from the outside. It feels difficult from the inside. Dis-ease = Not easy.

But when I think about my every day or week ahead it doesn't really cross my mind. My mind is filled with children, husband, family, friends, business, my dog, food shopping, exercise, sports, house cleaning, entertaining, concerts, movies, and catching up with friends. There isn't much room left!

At this particular time in my life I am happy. I feel positive. I feel fit, healthy and strong despite my legs being at their weakest.

Nordic Walking with Pompe!

Growing up as a kid and teenager I was very active and enjoyed playing tennis and riding a bike. With the muscle weakness caused by Pompe disease, I had to find something that I could still do, as well as enjoy.

Exercise has many benefits. It can ease muscle pain, lessen stiffness, and increase flexibility and mobility. It can also help stay active longer, have more energy, and improve physical and mental health.

However, exercise should be tailor made and take into consideration our specific needs, abilities, and disabilities, i.e., individualized adapted physical activity and the appropriate exercise for us, that we can also enjoy. That is why I tried and started practicing Nordic Walking!

Ma force et mon espoir: ma famille - My strength and hope: my family

Olivier Cavallero, 43 ans, Marseille, France

Moving on with Pompe - Pilbara Style

Hello the Pompe Community

My name is Roly Parsons and I was diagnosed with Late Onset Pompe Disease in April 2018 and began ERT in August last year. I live in the Pilbara region of Western Australia. The name of the small city I live in is Karratha and it is about 1000 miles north of Perth - my nearest capital city.

I was lucky enough to be diagnosed relatively early in terms of symptom progression. An early challenge for myself and family (which include a set of triplets and their slightly older sister) has been the fortnightly commute to Perth for my ERT. Living in a very isolated city, I am forced to spend two days away from home to access the treatment. My wife and support team at home (and employer) have managed these regular absences extremely well.

Together we are strong

This is a photo of me and my youngest sister at our weekly physiotherapy. We are sisters and we have both Pompe disease. We train every week two times at the physiotherapy. We love to be busy and keep us as strong as possible with good balanced exercises. We live in the Netherlands and our expertise centre will soon start with a research about a healty lifestyle for people with Pompe disease. As we know more, we let you know. Together we are strong.

Wilma Treur, Netherlands, 55 years

Boots don't have to be used for walking

Moving on with pompe, think out of the box !

We are greater than Pompe.

Lucy Golder, 60 years old, France

Unstoppable

My name is Morgan Burroughs. I am a 23 year old young woman who lives in the United States, located in North Carolina. My story is a bit different than the average young woman. I was born with a disorder that effects my muscles and weakens them over time. This invisible monster that I live with day in and day out is definitely challenging and it is pretty unfair, but that does not mean I let it hold me back from living my life to the fullest, the best way I can. Pompe Disease controls a lot in our lives and it takes our functioning bodies from us. It is never satisfied. The one thing it will never take is who we are and what we are. You can either let this thing have control over what you give to this world or you can see it as a gift, and I like to see it as a gift. A gift of bravery. A gift of courage. A gift of resilience. A gift to see the world in a bigger perspective. A gift to give you the power to never take no for an answer... to be unstoppable.

Challenges Can Be Overcome

Deborah Cunningham, 68 years old, diagnosed 2017 after 20+ years of not knowing what I had. Doctors at Johns Hopkins thought it could be polymyositis. Genetic test removed all doubt and results were in that I have Pompe Disease. I am receiving infusions of trial drug, NeoGAA, at Duke Research Clinic every two weeks. I adore the nurses and it seems to help me feel better afterwards. Please keep researching — genetic therapy is being tested and is on the horizon for some. I find my joy in my three grandsons!

Pushing myself (on the swing) to the very best of my ability

My name is Giuseppina and I am 49 years old living in Castel D 'Azzano in the province of Verona (Italy).
I was diagnosed with Pompe's disease about 20 years ago, to tell the truth, at that time I had requested a series of tests for other health problems, from those findings it came out that, I lacked an enzyme in my muscles.
I immediately thought of my mother who had lived most of her life in a wheelchair and this made me realize that maybe the two could be connected.
I'm not very good at talking about myself anyway, in short, after about 8 months, they subjected me to muscle biopsy at the San Raffaele in Milan and after about a month, if I remember correctly, the diagnosis: Glycogenosis type 2.

Woodworking

On Pompe day I am going to spend the day at my woodworking club cutting some segments for my next wood turning project. If you are in Sydney drop by Western Sydney Woodturners and let us show you the friendship, equipment and expertise we have.

Raymond Saich OAM

Australian Pompe Association
P 02-9629-2842
M 0418-966-509
E rsaich@bigpond.net.au
W www.australianpompe.org.au

A challenge for future when I was a teacher

Hello.
My name is Ikuo Kuribayashi, a member of Japan Pompe Association, age 56.
On 1998, when I was a biology teacher in high school, I was diagnosed Pompe
disease.
That time, ERT was on investigation, nothing effective treatments for Pompe
disease.
But I had a dream that some of my students would find the way to cure Pompe
disease.
So, I challenged some plans on my students to have interest on biology.
This is a tool I created that time, to learn hormone names and effects,
Hormone Quick Check Origami.

The Career / Wine / Life Balance

My Name is Renee Brown. Passionate wine drinker, Dog Lover, Wife and Mother. In that order. I'm 43 years old from Perth, Western Australia. I am diagnosed with late onset Pompe Disease. I manage a small, dynamic team at a winery in the Swan Valley, Western Australia.

Facing death with Chloe

On 29^th March 2018, Chloe was at KK Hospital to receive her regular enzyme replacement therapy (ERT) when she developed a mild fever. We kept her there for a night and she was discharged on Good Friday evening.

 

On Saturday, I woke up as usual at 8am and my routine was to go marketing. But somehow I didn’t feel like it and chose to stay home instead.

At 11.30am I went to take a shower and when I came out, my helper told me that Chloe had desaturated to 84%. My helper had already done a round of cough assist. Chloe was still coughing, so I continued suctioning and that’s when things started to go horribly wrong…

I Care for Rare

I would like to share my Podcast (https://www.sunoindia.in/1-in-20000/care-for-a-rare/)

 

Prasanna Shirol
President Pompe Foundation, Co founder and Exe Director - ORDI, India
Age 48 years

Time and Place

Every year when we, the Pompe community, commemorate Pompe day, I am reminded of the unfortunate fate of the man who discovered the disease which bears his name now: Joannes Cassianus Pompe.

I consider myself a fortunate person. With the exception of one major aspect, Pompe’s, I had all the luck in the world: loving parents, fine childhood, being able to study, interesting jobs abroad and in the Netherlands, extraordinary wife and two sons I’m very proud of. Good health, Pompe excepted. Being able to enjoy the good things in life. But most of all I was lucky to live in this time and place. Almost at any other time and in any other place I would not be here anymore.

How different was the life of JC Pompe.

Dealing with the Struggles

April 15 has a new importance to me. Having a dad that is a CPA, it always meant the big tax deadline had passed. It's also Pompe awareness day. In December 2014, I was diagnosed with adult onset Pompe disease - a glycogen storage disorder that causes progressive muscle weakness. It was a bittersweet answer that I had been in search of for many years. It was discovered that my liver and muscle enzymes were elevated when I was in high school. I played sports in junior high and was in poms in high school, although I wasn't great at anything physical. I started noticing more weakness in my legs over the past few years and was determined to find an answer.

Inspiring others with Hope

One thing I learned early on following my diagnoses in 2006 is that the Pompe community is full of strong and courageous people with a wealth of knowledge. There were 4 or 5 people that taught me so much in the early days of my journey. I have learned so much along my way from finding the right doctors, how to teach others about Pompe, the right way to advocate and using adapted equipment to make life easier to name just a few. I enjoy spreading this knowledge and hope to others that are newly diagnosed or just having a rough time. I get so much reward for helping others and I've become good friends with many in the community.

Moving on with the World

Moving on with Pompe. It must be done. The world moves on, and you might as well move with it. With Pompe Disease, this is often a challenge, but with trying times comes strength. As someone with has struggled to find a diagnosis, and having it for just under a year, the struggle is real. Moving on largely comes from within for me. Accepting my shortcomings, and knowing what the future can realistically hold, both in terms of disease progression and advances in care and treatment is what I must accept and move on.

Ster die straalt

Lieve Chantal
♡ 11 december 1984
* 6 juli 1985

Verhaal van een moeder die haar kindje verloor aan de ziekte van Pompe en Stichting Jet Brand oprichtte. - Story of a mother who lost her child to Pompe's disease and founded the Jet Brand Foundation.

Stichting Jet Brand, een Stichting met een duidelijk doel. Een doel ontstaan uit het verlies van mijn eerste dochtertje. Chantal werd 11 december 1984 geboren en overleed 6 juli 1985.
Zij overleed aan de ziekte van Pompe, voor velen een onbekende ziekte.
Met onze Stichting willen we graag meer aandacht om klinieken en organisaties te steunen.
Een ziekte die enorm veel impact heeft wanneer je eigen kindje dit heeft en veel te jong moet sterven.

Hoop...en dan de verpletterende uitslag 'De ziekte van Pompe". Een stukje blog op de website van Stichting Jet Brand. - Hope...and then the crushing result "Pompe's disease". A piece of blog on the website of the Jet Brand Foundation.

Wat een emotie wat een verdriet wanneer je daadwerkelijk alle spulletjes aan het inpakken bent om naar het Academisch ziekenhuis te reizen.
Kleertjes, speelgoed alles in tassen. Haar knuffeltje haar pyjamaatjes.De komende tijd wordt Groningen ons "thuis"
Ik ging samen met Chantal en een verpleegkundige in een taxi. Mijn toenmalige partner wilde graag een familielid mee. Tevens hadden we iemand nodig om met ons terug te reizen. Wat zou ons te wachten staan?
Niets maar dan ook niets herinner ik me van die rit.

Pompe Year 1: Let's Start a Sock Business!

Alison Miles, USA, 34 years old.

I have always been more clumsy than athletic. Slips, trips, and falls were part of everyday life, but in my childhood the damage was limited to a beet-red face, a scraped knee, or at most, a sprained ankle.

In adulthood, those minor missteps led to scarier moments - sliding down the stairs while several months pregnant; slipping on a wood floor while holding my 6-month old infant. I landed in the hospital more than once and was grateful to leave without any lasting damage to myself or my children.

Fast-forward a few years, and I found my clumsiness turning into outright unsteadiness and fatigue. After months of doctor's visits, tests, and more tests, I was diagnosed in January 2018 with Pompe disease. This was no easy pill to swallow, but over time I learned to accept my diagnosis and chose to grip joy despite my fears and uncertainties.

Never take No for an answer

My name is Heather, I am 44 years old and live in America. I was diagnosed with Pompe on July 10, 2015 after about 2 years of searching for a diagnosis. When I think back, I have had symptoms for as long as I can remember, but my parents have told me about my troubles walking when I was a kid. My mom told me that when I was about 5 years old, she and my dad took me to see the doctor because I walked with my feet turned in. Back them the treatment for this was to put metal rods in my shoes, but my parents thought this treatment would be painful and cruel. I grew up doing the same things my friends did, I played softball, tennis, rode horses, I was a swimmer, and tried ballet, tap dancing, ice skating and gymnastics. However I used to trip and fall often, and it was kind of a running gag with my friends and family that I was just clumsy. It wasn't until I was about 25 years old that I started having symptoms that effected my daily life. I began to lose abilities, I could no longer wear shoes with a heel, I couldn't walk up stairs or get up from the floor or a chair without assistance, I couldn't run, hop or stand on my tiptoes and I would get winded walking up a hill or stairs. I ignored all of these things, because it didn't have an impact on my daily life, I was able to maintain my work, family and social life. It was about 6 or 7 years ago I began to have significant pain and developed water on the knee, but this pain didn't have a major impact on my daily life. Actually I thought this pain was the result of some weight I had gained while I had postpartum depression. However when I lost the weight the pain didn't go away.

Am Leben teilhaben - Participate in Life

Hallo mein Name ist Michael Pietsch aus Deutschland. Seit 3 Jahren weiß ich, erkrankt an Morbus Pompe zu sein. Es war ein langer, harter und schwerer Weg bis zur Diagnose im August 2017. Viele Operationen; warum mein CK-Wert 1000 war. Aber im August wusste man, woher meine Probleme kommen. Eine Speicherkrankheit. Ich bin ein Mensch, der immer positiv denkt und viel lacht. Seit Dezember bekomme ich meine Enzyme, und toi-toi: Es geht einiges besser. Zurzeit habe ich eine 90G-Behinderung, gehe aber noch in Vollzeit arbeiten. Klar geht einiges nicht mehr so wie früher, aber wichtig ist, immer noch am Leben teilzuhaben, sich nicht zu verkriechen. Ich hoffe für alles, dass uns die Genschere helfen kann in den nächsten Jahren. Ja, das ist mein Wunsch.

Cruising with Pompe

My name is Dwayne Wilson, I am 51 years old and from the United States. I live in Southern California in Irvine which is about 20 minutes South of Disneyland. I was diagnosed with Pompe Disease last year on Nov. 19th at UC Irvine Medical & ALS Center in Orange, CA by Dr.Tahseen Mozaffar. I was accepted into a Clinical Trial and had my 1st ERT infusion a month later on Dec. 19th. My wife and I had reservations for our 1st Cruise to Ensenada Mexico with another couple from my work. It was a 3 Day Cruise planned for the end of January from Friday to Monday. The Cruise had been planned for at least 7 months ahead of time. Month by month I was slowly losing my leg strength and unable to stand up from a chair on my own. My legs felt like jello, like I had run a marathon with only taking a few steps. I could no longer climb up stairs unless I held onto a railing and stepped up only with my right leg. I had no energy, I was exhausted and tired after work even though I sat at a desk all day long.