Enjoying what we have left

Enjoying what we have left

I was principal clarinetist in a semi professional orchestra for 28 years and had to give up my position after my first 4years of PD. Anxiety and inconsistency did me in. I am still very active as a jazz/contra dance Clar. and Sax player in my eighth year and am convinced that playing everyday is slowing my progression. I still teach privately , but no longer to advanced students. I notice that taking time off is very detrimental. My chops, breath support, and technique are eroding, but I am thankful to be still gigging. It is interesting that one can still sing proficiently with the weakened voice symptom of PD.. I was wearing off during a recent jam session and popped som sinemet and had to let it dissolve in my mouth due to no nearby water and the positive results were immediate . All we can do is be thankful for what we had and do the best we can to appreciate what we still have left. Did anyone have any luck with DBS?

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  • Good morning Mick21

    I believe you can get back some of your abilities. It takes hard work and perseverance but it can be done. I have been exercising for 18 months now and have regained almost every thing that Parkinson's had taken away. I still don't have all of the very fine motor skills in my hands but almost. Sleep is still a problem but it does not slow me down. I am better right now than when i was DX 11 years ago. i go all day long. I get tired in the evening but i am 62 and that seems to be normal. The only symptom i do not have is tremor so i can not speak for that.

    i do crossfit but any high intensity all inclusive program that includes weights, yoga and cardio should do. It should push you to your limits and beyond. I lay on the floor gasping for breath at the end of the work out.

    I work out 1.5 hours 6 days a week now. This seems like a lot but PD is a hard one to keep under control. i am a little blessed by the fact that i do not get sore no matter how long or often i work out. Just born that way.

    i could run only 200 meters at first now i am up to 5 miles.

    These are my personal best.

    Dead lift 395 pounds (180 kg)

    Back squat 335 pounds (152 kg)

    Front squat 205 pounds (93 kg)

    Clean and jerk 165 pounds (75 kg)

    I also do pull ups, set ups, ring dips, push ups, skip rope, box jumps, rope climbs, kettle bell swings using a 90 pound bell, my goal for this year is to do a muscle up.

    The gym i go to does a work out on memorial day (the day we honor our fallen heroes)

    called Murf it is run 1 mile do 100 pull ups, 200 push ups, 300 squats, and run 1 more mile. I did it in 56 minutes and then ran another 3 miles in support of the second class that day.

    I write this not to brag but to show what can be done.

    i also take my meds which are C/L , azilect and Requip.

    Never give up

    Living the good life

    Bailey

  • Thanks for the advice and inspiration. My routine is not nearly as intense as yours, but I will crank it up a bunch. I think we are both blessed with a mild case and should take advantage of it, positive thinking (and actions)are powerful .Howlong ago was your diagnosis?

  • Sorry I just re read it was 11 years ago.

  • BaileyTexas What an inspiration you are, if a little daunting. After 11 yrs PwP I have only lately realised the importance of really making a superhuman effort to exercise. I have only managed to exercise on a very modest scale the last 4 weeks, but I absolutely feel an improvement and try to not on;y keep it up but also increase intensity as I become more able.

  • good luck

  • try a little device called EMST150 which was recently developed by the Uof FL and is used to strengthen expiratory muscles. it was suggested to us by the Big and Loud voice rehab therapist. i am waiting for my husband to get over a bout with pneumonia to use it but i tried it and can see that it would work. when i showed it to our cardiologist,he said it should be given to every PD and cardiac patient right at diagnosis. also, you might look up studies about which supplements work to preserve muscle integrity and strength. Check out PubMed, LEF.org for info. magnesium comes to mind as it is good for muscles and respiratory issues.

  • IL am just reading your reply after 5 Months. Thank you very much for the tip and advice.

  • I can relate to your post!! I am glad you are still enjoying your music and your ability to gig! I am still trying to do music, but it's challenging. I'm a singer/guitarist and am feeling that I should probably give up singing since I am losing my ability to hit notes with accurate pitch (feels like my diaphragm/lungs are affected, and not responding to the messages from my brain). I know that choirs are good for people with Parkinson's, so I sing in a choir. I have good days and bad days. If it's a bad day, and I can't reach my pitches with confidence, I blend in very quietly. I still sing in a trio but do not offer to sing lead on most songs, and choose harmony parts in my low alto range, which is more reliable. My guitar playing is not as strong, but I can still play songs well enough (muscle memory helps, I find.)

    Good luck on keeping it all going!

    Oceanflower

  • I hear you brother. I was never a professional musician, but I have always played guitar. I was in pretty bad shape as far as my symptoms by the time I eligible for retirement at 55.

    I retired right away and moved from San Diego, CA to Louisville, KY and got connected with the local music scene. I regularly attend various jams around town (I am a regular at Stevie Ray's Tuesday Night Blues Jam) and gig on an occasional basis.

    Along with properly titrated medication and regular physical exercise, I have found music to enhance all my therapy and general well being. The rhythm virtually eliminates the freezing I was experiencing. Like you, I find I can still sing, but I have gone back to my High School instrument of choice - the bass guitar - as I am not as dexterous as I used to be, and I am playing with some very accomplished guitarists.

    Believe it or not, seven years after my diagnosis, I am having the time of my life.

  • I'm 67,diagnosed in 2002 and worked in my own PT clinic till 09. I underwent DBS 12-14 and find it helpful. However the

  • Sorry for the interruption....

    The fact remains that this is a multitalented disease with many different layers of degradation... not only motor. I feel at times that the nonmotor symptoms are the hardest to deal with. Later today I'm going through a bladder diagnosis test to see if there's any way to control my "urinegency ". The plan is to see if I can get a good nights sleep. I would still have the DBS done again.

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