PERSÖNLICHE GESCHICHTE VON MUSCLE GSD
MEINE ABENTEUER IM JAHR 2019
Mein Name ist Gary McLellan, ich habe McArdle's und ich möchte Ihnen von meinen Abenteuern im Jahr 2019 erzählen. Ich bin 57 Jahre alt, wurde vor 30 Jahren durch Muskelbiopsie diagnostiziert und in jüngerer Zeit durch DNA bestätigt. Wie so viele von uns bin ich homozygot für die R50X-Mutation im PYGM-Gen, was bedeutet, dass ich keine Myophosphorylase habe.
Name: Deborah Corcoran
Country: UK
GSD: McArdle’s (GSD5)
Diagnosed at age: 33
Age at writing: 54
Date: 09/2022
Ich bin mir sehr bewusst, dass dieser Bericht über mein Jahr ein wenig prahlerisch wirken könnte und dass einige Leute mit McArdle's aus allen möglichen Gründen nicht so gut zurechtkommen wie ich. Ich hoffe jedoch, dass mein Konto Ermutigung gibt und zeigt, was für einige Menschen mit dieser Krankheit möglich sein kann.
Meine Arbeit ermöglicht es mir, sehr fit zu bleiben
Ich arbeite als selbständiger Baumeister und lebe in Bollington, einer kleinen (hügeligen) Mühlenstadt am Rande des Peak District. Ein manueller Job, bei dem ich sehr hart arbeite: Dachdecker, Tischlerei usw., scheint mich vor den schlimmsten Auswirkungen von McArdle zu schützen - aber ich bin kein Arzt, also ist das eine Vermutung!
Ich bin nicht immun gegen die Auswirkungen von McArdle. An den meisten Arbeitstagen muss ich darauf achten, dass ich in den zweiten Wind komme, wie beim Klettern oder Radfahren. Ich finde im Allgemeinen, dass je aktiver ich bin und je weniger ich wiege, desto weniger Symptome auftreten. Vor 18 Monaten wog ich 93 kg. Ich habe mich bewusst bemüht, Gewicht zu verlieren und bin jetzt 78 kg schwer. Ich fand, dass das Abnehmen einen großen Unterschied machte.
Meine Abenteuer im Jahr 2019
Anfang 2019 hatte ich meinen routinemäßigen McArdle-Termin bei Dr. Quinlivan in der McArdle Clinic in London. UCLH ist 190 Meilen von meinem Haus entfernt, also stieg ich auf mein Pushbike und fuhr in zwei Tagen dorthin!
Myanmar Trekkingfreunde aus Australien und den Niederlanden.
A long-held dream
“What next?” I thought. I had a long-held dream of seeing Machu Picchu in Peru, but rather than just visit on an excursion, I saw an advert for our local hospice to trek the Inca Trail to Machu Picchu. Myself and my husband signed up immediately.
I knew I would have to be mountain fit as we were due to trek 42 km over four days, at altitudes up to 4300 metres. We purchased our new boots and set about wearing them in. We walked up local hills, we climbed Snowdon, at Easter this year we stayed in the Lake district and climbed Scafell Pike (that was a hard one, very rugged and uneven, coming down being as bad as going up!). It took me a long time to get into second-wind when ascending and I paused many times, on the flat or going downhill was no problem. We just walked whenever we could. I also walked a few 13 mile trips on the flat on my own to keep my legs strong.
Myanmar Trekkingfreunde aus Australien und den Niederlanden.
Ich bin 18 Tage gewandert, habe ungefähr 12.000 Höhenmeter geklettert, aber 14 Tage lang hatte ich sehr wenig Schlaf, da ich aufgrund der Höhe Schlafstörungen hatte. Andere „normale“ Menschen wurden aus meiner Umgebung gerettet, aber mir ging es bis zum letzten Durchgang gut (zum 6. Mal über 5.000 m). Ich brauchte eine Stunde länger als die Reiseführerzeit, weil ich vor Schlafmangel völlig gescheitert war.
Interessanterweise habe ich nach dem Trekking am ersten Tag nie die übliche Einschränkung gespürt, bevor ich in den zweiten Wind geraten bin!
750 Meter über dem See - doppeltes Gleitschirmfliegen in Pokhara!
Ich verbrachte die letzte Woche meines Monats damit, in einem Bus nach Pokhara und zurück zu reisen (wie im Weihnachtsspecial „Top Gear“!). Während ich dort war, bin ich in den Hügeln Rad gefahren, habe im Wald gewandert und bin doppelt über den See geflogen.
Beste Grüße, Gary.
750 Meter über dem See - doppeltes Gleitschirmfliegen in Pokhara!
I spoke to the guides and doctor
The next day the trek itself started. After a two-hour coach ride we found ourselves walking along a river in-between mountains, and we were off! I found this day particularly OK. Although I was at the back for most of it, so were others and I did not feel ostracized. I was so grateful to see our campsite at the end of that day.
Thinking back to previous advice, I spoke to our guides and the doctor as I had not really mentioned McArdle’s yet. It was decided that on day two, when we stopped for breaks or lunch, I was allowed to set off 10 minutes before the rest of the group. This worked so well that when we climbed to the highest point at 4300m over Dead Women’s Pass, I was the third person from our group to reach the summit. I was crying inside, tears of joy, tears of exhilaration – me with McArdle’s had made it to the top of the highest point ahead of 17 other people. No one knew how I was feeling as I stood with the fitter people, we waited over half an hour for the next people to arrive. Go me!
750 Meter über dem See - doppeltes Gleitschirmfliegen in Pokhara!
A tough day, into camp just before dark
Day three I thought I had it conquered. How wrong I was. I struggled so much that day, it was over 18 km and up and down, not as high as the day before but still pretty high and very rugged and hard.
They were also pushing us this particular day because we had to arrive before dark and I think we had set off later than planned. Our group was really separated with some people arriving a long time before others, myself and my husband just made it before dark. A small group at the back finished in the dark with the help of our guides. I was thoroughly exhausted but also happy.
750 Meter über dem See - doppeltes Gleitschirmfliegen in Pokhara!
The final day to the Mach Picchu
The final day was the trek to the Sun Gate and our destination of Machu Picchu. They told us it was “just around the corner from camp”. It was actually over a two-hour trek, but it was ok. Not too difficult apart from the Monkey steps (see photo) which were terrifying for everyone. You could not walk up them, you had to clamber. I kept having to rest as I was using my arm muscles as well as my legs and it was really hard.
Once up them it was plain sailing and we were an incredibly happy bunch of people arriving at the Sun Gate, which overlooks Machu Picchu. We then walked downhill for around 45 minutes to arrive at Machu Picchu itself and had a lovely tour.
750 Meter über dem See - doppeltes Gleitschirmfliegen in Pokhara!
An amazing experience
I am so glad I did this and feel really proud of myself, as it was not easy but I managed it. Luckily for me, I know how to exercise with McArdle’s and I know what my weak points and my positives are. It was an amazing experience and I loved every minute of it.
What next? Well, I am hoping to climb Ben Nevis but not until next year. I think my fitness work for the next few months will consist of walking on the flat, maybe a few hills, but definitely no mountains!