Produadopa/Vyalev Updates – 1 week
This follows my posts after 1 day and after 4 days
Bottom line to save time for those who are fed up reading the blog – the new pump remains truly amazing (with some issues). It is 4am and my sleep challenges remains unresolved but I have finished a 5k run (and yoga) and completed some work. A few weeks ago I was frozen on the floor after falling, and almost unable to walk assisted when OFF.
Yes – I ran 5k again 🙂
The huge caveat…
There is a reason for medical science doing detailed research. It is far too early to draw broad conclusions on the success of Produadopa/Vyalex, so please keep that in mind.
My physio yesterday summed it up yesterday when she told me she is treating other PD patients and we are all completely different. Every PD patient I have met has a different basket of conditions and mine are certainly different. My physio for example told me that the other patients she treats have far more pronounced shaking whilst my muscles are much much stiffer. I am 4.5 years in and pre pump I had virtually no tremor and shaking of any note but movement (balance, freezing, shuffling) challenges at pretty advanced stages.
So 1 week on…
Overall it continues to be truly remarkable but yesterday was the first day with ‘blood and bruises’ so some of the earlier europhoria is translating into an ongoing sense incredible satisfaction, gratitude and some acknowledgement of the challenges.
The bottom line is summarized by the simple fact that I ran 5k unaided without sticks or support.
It is also summed up by quotes from people around me (names anonymized), including:
“Wow my dad is not disabled anymore” – (One of my three kids)
“You used to just sit on the sofa and not help at all” (My better half :-))
“You look like a completely different person” (Almost everyone I have met who knows me)
“You look 20 years younger” (A colleague)
I could go on but I think the point is clear. It is a complete game-changer for me. I feel and continue to feel like an entirely different – so much more energy, no/almost no balance or walking or freezing issues.
All that comes next is to me minor and secondary but is important for the record.
“Blood and bruises”
I have also seen the challenges start..
Each time I insert the needle I rotate around my stomach as advised. Saturday, it was the turn of the North point in my Stomach rotation and the needle hurt going in and it felt like I had probably injected into too tough an area. On the couple of occasions I used the boost (because it was a very long day which started around 1am and I was out till 10:30pm) it really hurt “like burning sensation”. It wasn’t till I got home in the evening that I realized my vest was stained with what was clearly liquid from the cannula. In the morning when I changed the canula I had a clear build up of some fluid and some blood. I spent time massaging it (with a spiky ball they gave me), ensuring it was sterile and clean and washing it. So far at 24 hours later it is feeling and looking ok. I hope nothing more will come of it.
Yesterday’s injection (North East) was much easier.
It is clearly so so important to keep the process sterile and to do the transition of the drug carefully – today was my first real actual lesson.
It is not a cure…I need to stay focussed and not get over excited
At moments the thought has crossed my mind that I am virtually symptom free – and I am. I have after all just finished a 5k.
At times however, PD reminds me it is there and I know if I stopped the drug or the machine broke, the disease would kick in at full force in a matter of minutes. I know this because I have seen it many times on not taking the meds and in OFF periods. I therefore need to keep focused on the complete routine and not overdo it as I almost did on Sunday night when having woken at 1am I went to an amazing wedding until after 10pm and felt completely overtired. I need to not be a fool and I came close again but realized just in time.
So … I feel great!! and as always give huge gratitude to the medical community, family and G-d!!
(To save many people countless whatsapps and to enable those who want notification of my posts to receive them I have set up a whatsapp community where I will post links to updates – you can join through this link https://chat.whatsapp.com/Itz8sxJ2JWh25la3OHJLRi )
3 Responses
Great report Ben. Can’t offer you much on the blood and bruises front other than to say that I sometimes get bruising from my Apo injections. And your physio is spot-on: PD is a boutique disease. We are all the same yet we are all different! As the saying goes “if you have seen one person with Parkinson’s, you have seen one person with Parkinson’s!”
This is really good feedback since a couple of people on HU have not had success, or they had initial success but then it failed. I understand what you are saying when you say you feel like a completely different person. I just had DBS and had a day and a half where my balance issues disappeared and I felt normal. Sadly, they came back somewhat but programming is hopefully going to take care of that. I am keeping the pump in reserve for when I need it. I hope it will continue to be successful for you for a long time.
Shalom,
Julie
Thank you and wishing you and all of us all the best