To do so, I will begin with the wishlist of 6 things that I wanted improved, which I wrote in July before the surgery.
1. Take less pills
2. Stop dyskinesia
3. Get a good night's sleep
4. Improve handwriting
5. Stop toe curling
1. Take less pills
I had dropped the Madopar, (Sinamet), Synnetrrel, Sifrol (Mirapex) and Serrequel, and was only taking half the strength Stalevo.
However, after not feeling great for the last few months, I have resumed the slow release Sifrol.
2. Stop dyskinesia
All involuntary movements have stopped. I am now very still.
3. Get a good night's sleep
Was doing really well; getting about 7-8 hrs, but since i've resumed the Sifrol, I'm back to my old habits; it's 4.24am now! So still working on that one!
4. Improve handwriting
Handwriting is still illegible, but I was told that wouldn't change.
5. Stop toe curling
Toe curling is a thing of the past, as is 'freezing'. I can now walk my dog and go alone to shopping centres without fear.
6. Drive better
Definitely improved. No longer wandering into other lanes.
Other issues
Bike Riding skills have deteriorated; I am slower, and go for shorter rides. Whether this is a fitness thing, or a confidence thing, I am fortunate to have a willing bicycle partner, Ingrid, who is still happy to accompany me every Wednesday. hopefully we will make it to Southbank and back from Brighton (36km) again eventually. But I still do ride.
Movement is still being worked on; walking has been an issue since the 'honeymoon period' wore off. This is something that my neuro is working on.
Conclusion
One must not expect DBS to be a magic 'cure'. Everyone is different, and it takes a while to adjust the device and meds to get it right. Again, I believe that having a competent, caring neurologist is really important. I have faith that together we will reach a point where I will feel as good as I did straight after the surgery.
I am blessed to have a patient, loving and supportive husband, and fabulous, understanding friends who are always there for me, giving me lifts and always asking how I am.
I am constantly asked, "Would you do it again, knowing what you do now?" The answer is, "Yes". I have gained my independence. Hopefully I will fitten up, and sort out issues with my neuro, feel even better soon. A positive attitude helps!
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| My first haircut in 6 months |
A note on my Vietnam Bike Ride Blog
If anyone has clicked the link on the right to read about my bike ride to Vietnam almost 3 years ago, i have just discovered that I had Fred's blog up all this time, not mine. It's been corrected to my link.
Would I do it again, knowing now what was in store? NO!
karyn...a very good objective blog.....just giving the facts as they are.....i really liked your conclusion.....you told it like it is...fantastic blog
ReplyDeleteWonderful blog. DBS preOp scheduled 4/9 at Baptist Hospital in Winston Salem, NC. Surgery is scheduled for 4/22 then again on 5/13. This definitely helps one making the decision to have DBS. It's much better than living with the limitations of meds.
ReplyDeleteDBS procedures are more than 20 years old at this point with the technology and so it's pretty common especially in teaching hospitals, which I recommend, if its an option for you. My resources are great at Baptist and am very blessed to have it available to me.
John