Experience of agonist side effects
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“Listening to episode 11 was amazing. My daughter with Young Onset Parkinson’s was diagnosed in her 30s. Her story is an example of the devastating negative side effects of the agonist drugs.
After being widowed suddenly with 2 young sons her symptoms were first thought to be caused by grief. When diagnosed she was prescribed levadopa and her symptoms improved. As the disease progressed she was prescribed an agonist which kept symptoms at bay for quite a while. She did not have any local family. She attended all her consultant appointments alone and as discussed in this podcast even though she may well have been warned of side effects, unfortunately she succumbed to impulsive gambling behaviour and was assuring her consultant that this was not happening at every appointment.
Unfortunately it was only when one of her friends became aware of some worrying behaviour that it all came to light. She had for some time been borrowing money from so many people without being able to repay it, telling lies, and she eventually had to sell her house. She lost all her friends, who despite being told it was not her fault, and given medical proof, have to this day never forgiven her. I had to take control and went with her to the consultant who had been increasing her dosage. I was so angry that knowing the risks they continued to see her ON HER OWN for so long. She was weaned off the agonists gradually but as pointed out in the podcast impulsive behaviour can also occur with levadopa. She was very unwell for a long time. Her original consultant left and the new consultant prescribed Deep brain stimulation. Unfortunately this did not have the desired affect and although the gambling did eventually stop we got a second opinion from a different consultant in a different area to discuss alternatives. She has not had the DBS mechanism removed but it is no longer switched on. She moved away from the area where all this happened leaving her two teenage boys to fend for themselves, with no local family support. Financially draining on me as a retiree and the only support from over 100 miles away. The alternative decision was to insert a Duodopa pump (before her 50th birthday) which is monitored by a new consultant and I gather is expensive for the NHS and not widely available. Thankfully this has proved successful for a few years but without it her symptoms are deteriorating quite dramatically.
She now has a supportive partner and her boys, who thankfully did not go off the rails, have become level headed and independent in their 20s and moved to the same area as their mother.
Without the devastating effect of these drugs she should be securely living in her own house with friends surrounding her. Thankfully she has a strong personality and I am very proud of the way she copes with her lot. She has only recently managed to create a small circle of new friends but I do however still worry about her financial situation. Her partner is now her carer and they have to survive on benefits. I help her out as much as I can otherwise she would not be able to have any social life as we all know how Parkinson’s can lead to isolation.”
Walesretiree via Apple Podcasts ·
Great Britain ·
12/06/23
More reviews of Movers and Shakers
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“What a delight to listen. Good that you can be light and fun as well as serious. As a Parki myself with light symptoms I would love to join you to chat about …… drug trial I am in, cold showers and effects, how to judge effectiveness of drugs, linking up commonalities between parki people to see...”Read full review »
Patsy1P via Apple Podcasts ·
Great Britain ·
09/14/23
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“Thank you for a fascinating podcast - I am ashamed to say that I have only just discovered it - through a patient in fact.
The proverbial cat is now out and everyone I know will be told.
Many patients I see do not want to go to ‘PD groups’; they say they don’t want to see the future as there are...”Read full review »
Ella Oxford via Apple Podcasts ·
Great Britain ·
05/15/23
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“Thank you all so much for this incredibly informative Podcast!! We listen religiously each week. My husband was diagnosed in 2015 @ the age of 56. We are pretty well managed here in the colonies. He is still working as an academic, well supported once he told them. Looking forward to DBS in 5...”Read full review »
A bit gittery via Apple Podcasts ·
Australia ·
05/20/23
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