My Brother Died from Parkinson's

My Brother Died from Parkinson's

My brother had Parkinson's for 3 years. It finally took his life. He died in 2014 at the age of 70. It was very sad. I do not have Parkinson's, but I want to know more about it. I have 4 friends who have it. He also had Alzheimers. The doctor said that many times these 2 diseases appear together. Has anyone heard that? He said they are like brothers. He did not even know me at the end. It broke my heart.

My siblings were all in my wedding. My brother Bill, who died is on the left. Photo from  June 1979

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34 Replies

  • Glad to share any think I can.

    Get your friends to log on here they need all the info they can find.

    Exercise is one thing they need to read about. With meds and exercise i am holding my PD. at bay. It can be done if they start soon enough and stay with it. 

    Bailey winning the battle and some day the war.  

  • Thanks for the advice. I will pass it on to them.

  • RoyProp Thanks.

  • One thing your friends shold be aware of is that there is no right or wrong in the treatment of the condition.  There is no "one size fits all" solution. Each person will have their own regime using a combination of drugs and mental/physical exercises. The real trick is, of course, to find the best fit. This can only be done by making adjustments to that regime, based on the feedback perceived by each person. 

    There is little that consultants can do beyond advising on the type and quantity of each drug. In my experience, they will listen to your described symptoms and advise on the specific drugs to deal with them. But if you feel that a variation of that will work better, then try it, just be sure to take account of the advice given by the drug manufacturer.

    As an example, in my own case, my regime began with Sinemet at 3 hourly intervals which was then changed to 1 Stalevo/Stanek at 3 hourly intervals, limited to only  4 per day, with Sinemet continuing for the remaining 3 doses. My consultant was concerned that we didn't know enough about the long term effects of the Entacapone in Stalevo to replace all the Sinemet. I found that the effect of the Stalevo (to even out the peaks and troughs of the drug effects) was taking about an hour to make any noticeable improvement, then began to slide down again after about another hour. So I experimented and found that taking half a Sinemet with the Stalevo gave a boost which almost eradicates the "down" period. I try to cut down on my Sinemet by not taking the half at the beginning of the day, unless I need to be more active and alert at that time.

    That works for me, but I could not say whether it would work for anyone else - we are all different.  As an encouragement to others, I should tell you that I am 80 years of age and was diagnosed 14 years ago. Parkinsons is a beast to deal with, but it isn't the end of the world. My wife and I have just moved to a new retirement village which has provided the opportunity to re-acquaint myself with the swimming pool and learning how to swim again!

    Good luck to your friends

  • Great information. Thanks Jupeter.

  • Jupeter Thanks for the information.

  • Bobjensen,,

    I'm sorry to hear about the death of your brother. It is very unusual to die of Parkinson's after only three years. Were you given any other information? Your friends can expect 10 to 20 years of life despite PD, as long as nothing else hits them first.


  • johntPM Thanks, John.

  • Hi Bobjensen. Nobody ever died of Parkinson's. It does not kill you, it just makes your life a living hell, if you let it. People with Pd invaribaly die of pneumona or some other related chest infection due to poor muscle tone in the chest area.

    Have you heard of Dr Norman Doidge? He wrote a book last year, "THe Brain''s Way of Healing", in which he had a whole chapter on my Pakisnon's experience.  He is a keen observer of soethig called Neuroplasticity, which means that the brain can and does change to suit the body's needs. My brain changed in a very special way.

    I was able to overcome most of my Pd symptoms and after 10 years of taking a certain type of medication and doing FAST WALKING, I was able to come off that medication in 2002 and have not taken any since then. I now live a normal life at the age of 81 with no visible signs of Pd, although it is still there.

    Take control of your life and start doing the proper execise.

    Good luck.


  • JohnPepper Thanks. Parkinson's is the cause of death on his death certificate. He lost the ability to walk, talk, swallow, etc. He also had Alzheimer's. He did not know who I was. It broke my heart.

  • My mother was in a similar way and died at 88 from not being able to eat drink or other symptoms related to Parkinson's.  I am sorry for the loss of your brother who obviously meant a great deal to  you .


  • redean Thanks. I am sorry you lost your mother. He was a great older brother.

  • So sorry for your loss but did your brother do any form of exercise or did he just sit and let the disease take over his body. Which it will do very quickly if you give in too it. I have Parkinsons and up until a recent fall from my horse where I badly broke my ankle ,I ride most days. Sitting down for6 weeks I can feel my muscle tone slipping away my strength dissepearing and I cannot wait to get the cast off and get back on my horses. Regards andrea.

  • He did not exercise enough.

  • great advice exercise is the key I take no pills just fast walk and stationary bike when the weather is nasty. PT classes is another suggestion

  • fullinspections Thanks. Keep up the good work.

  • Hi Bobjensen. It just goes to show! Sorry to hear about your dad. Perhaps he is in a better place now, wondering what all the fuss is about.


  • It was my brother.

  • Hi Bobjensen. My abject apologies. I don't know why I said you dad.


  • No problem.

  • I am sorry about you brother and prayers to your friends who have Parkinson's.  My brother was misdiagnosed for years and was finally diagnosed with Parkinson's in September 2013.  The diagnosis was later changed to MSA and PSP and he passed away in December 2014.  After doing a lot of research I believe this is fairly common.  Your brother may have had a more aggressive type of Parkinson's like disease such as   Lewy body dimentia.  I also encourage your friends to follow this site - the information and experiences that are shared are invaluable. 

  • Jbpractice Thanks.  I am sorry you lost your brother also. My brother died February 24, 2014. I miss him a lot. He was 10 years older than me.

  • Bobjenson - I'm so sorry to hear of your experience and the loss of your brother. That's very sad. I can only echo what others have already written - encourage your PD friends to take a look at this forum. Many people here are living well with PD - there's lots of advice and experience. I've learned a huge amount. It's a pain in the neck but there are some workarounds. The best three bits of advice I've had from here are: Mucuna Puriens, exercise and wear silk pyjamas (which cheered my husband up enormously) but it makes turning over in bed easier!

  • stevie3 Thanks. I will tell my friends what you said. Please tell me more about Mucuna Puriens.


    Also, if you put it in the search engine on this site, you will find a number of threads. Essentially you can get it in powder or capsule form. I use a powdered form, sold as Zandopa. I've found it very effective. It helped me defer using prescribed medication. I do now take a prescription med but I'm able to only take half the dose prescribed which I think is partly due to supplementing it with Zandopa. I'm relatively young, so I may be living with PD for a long time and I want to keep medication as low as possible, consistent with having a good quality of life. At the moment, I'm doing pretty well. Staying active is the thing.

  • Thanks.

  • My heart goes out to you, Bob. It's terribly tough to lose a sibling.

    My mom also experienced a fast and brutal decline with PD. However, after she passed, I learned she had been diagnosed with an "atypical Parkinson's" called Dementia with Lewy Bodies. Your brother's experience is unusual, and I'm wondering if he may have had one of the atypical PDs as well. You'll meet people in this group who have been living with Parkinson's for 10, 20 years.

    My sister passed at 42 (not from PD) some years ago, and I don't know that I or our other siblings have recovered. So much shared history. Bless you for reaching out for info, both to understand his illness and to benefit your friends.

    Take care.

  • Beckey Thanks. I am sorry for your losses.

  • Hi BobJensen,

    I'm sorry to hear about your brother.  "They" say you don't die from Parkinson's, but I believe you do.  If you didn't have Parkinson's, more than likely you wouldn't have had pneumonia, swallowing problems, etc. that caused you to die??  You might encourage your friends to do some type of strenuous exercise.  I do a non-contact boxing & it has helped tremendously.  It's strictly for PwP's (Person with Parkinson's) and it's for any age and any level of PD.  It started in Indianapolis in Oct, 2006, but it works so well that affiliates are opening all over the U.S. & other countries also.  Here is the website:    There are a lot of great videos to watch to find out what it's all about.  The one with Leslie Stahl is good.  I have a testimonial on the website.  You can find it under:  About/Testimonials & my name is Debbie. 

    Take care!

  • laglag Thanks. It took away his muscle control.

  • Sorry to hear about your brother. I am sure he had symptoms long before he was diagnosed. My husband was diagnosed in 2007. The more we learned about PD, the more we realized he had PD for several decades but was never treated because the symptoms were so mild. PD dementia and psychosis are two non-motor areas that often accompany the disease.  Take time to research PD by attending symposiums and contacting your local chapter of the National Parkinson's Foundation or Michael J. Fox Foundation.

    People do not die from Parkinson's but from a complication of it.

    May God bless you and bring you comfort.

  • wifeofparky Thanks.

  • Sorry to hear about your dad. My gran died from lewy body dementia and parkinsons January gone.

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