Forum Replies Created

  • I was stamped with Young Onset of PD when I was 53. By that age I had no idea or even basic awareness about Parkinson’s Disease. We had not seen or heard about anyone having PD  amongst my relatives, friends and other acquaintances, not even in past 3-4 generations. In fact PD was not so widely spread in India untill recently. So nobody in my family and friends were shocked, feeled it a devastating earthquake, a doom’s day, end of the world, etc.

    However, the serious voice tone and expression of concern with which my neurologist pronounced “This is known as Parkinson’s Disease affecting movements. it is progressive and incurable unfortunately. We in the medical science don’t know yet lot about it. ” signalled me that it should not be taken lightly. For few minutes I tried to visualise remaining 6-7 years of my stressful job as manager in the highly demanding, always-on-fire IT industry and asked ” Dr Will I be able to continue my this type of job ? ” His response was very comforting. ” Yes, by all means. You will have to eat few medicines lifelong, do  some exercises I prescribe. It usually takes 7-8 years until it starts getting that bsd. ”

    Luckily my wife or anyone from my family did not come with me in this meeting. I didn’t tell them the whole story and kept worry part confidential for few years. My symptoms were very mild and responded nicely to the medicines and exercise. For 4 years nobody except my family knew that I had PD as I could work and perform personal activities as if PD did not exist. I was quiet confident to complete my whole service term and retire at 60.

    Around 57, however  the mounting workload and the waning effect of medicines eventually started dictating my health. My symptoms started manifestting more obvious and noticable. The increased doses of medicines, exercise and yoga did not help much. I was frequently missing my goals and targets but could manage by damage control measures and unconditional support from my project teams.

    Near close of 58, the situation in my workplace turned unfavorable. Many folks in my higher level managers and lower level teams moved on or were reshuffled. I was used to deal  with such changes. But now my PD had progressed significantly. New symptoms like fatigue, loss of energy, confusion, forgetting, freezing episodes, stooped gaits started manifestting more obvious than before.

    It was a hard decision to quit sacrificing 2 years of service but I had no choice.

    Long story told short – Yes, Parkinson’s Disease compelled me to retire early.

  • I watched the videos in first two links. ” Totally unbelievable ” will be the first reaction by anyone who is fighting the duet with PD or has someone close facing it.

    • Hundreds of research projects are going on for several years worldwide to find a sureshot therapy / solution to PD but very few are showing ray of hopes. Majority of these projects have either vanish into the blue halfway or nothing is heard about them after the clinical trial stages. But this vibrating gloves therapy may not be a rocket science thing but certainly showing a novel, Out of the Box Thinking approach and improvement accross most of the critical symptoms and that too expected to last longer than any other therapis available today. The cherry on top is that it is non-invasive and no serious side effects expected. Looking at the technology and materials used, I hope this device won’t be very expensive.
    • What more do you want ?
    • Also hope it will pass through all approvals and seen in the stores soon. It is very likely to be a game changer as described. In my view this is a milestone invention which deserved to hit the news headlines globally. But I wonder why it did not feature in the public media as such. Few people like us who keep surfing the net, subscribe to forums such as  Parkinson’s News Today will be aware of this new ray of hope.
  • I am facing PD for past 10 years.

    I relied solely on modern western medicines until I became aware of their side effects, the progression of the disease. After exploring hundreds of material on the internet, I was convinced that although hundreds of research projects are going on worldwide but nothing worth hopeful will be available to the patients in the near foreseeable timelines.t

    But I am not going to give up. At least 1 or 2 days in a week I keep exploring alternative and supplementary therapies on internet and other sources and try whatever appears to make sense, viable, not risky and most importantly affordable to an average retired person.

    Since every PD patient is considered a unique case, causes could be different, there may not be one solution that works for all. Hence I think we all need to keep trying.

  • ravindra-kango

    Member
    August 9, 2022 at 5:12 pm in reply to: Claw Toes in Parkinson’s Disease

    I don’t see option to edit my previous reply hence added new reply.

    I also observed that when I had clawed toes, one simple trick helped often: Wear soft sleepers or thick socks while walking and standing up indoor and use soft leather sandals or shoes for walking outdoors.

    The Tadasan and walking indoor few yards in that position apart from correcting the clawed toes, also helps to improve balancing.

  • ravindra-kango

    Member
    August 9, 2022 at 4:51 pm in reply to: Claw Toes in Parkinson’s Disease

    Hi Wanda,

    I have PD for past 10 years and sufferred due to clawed toes initial few years. It was very painful to walk dragging a lag with toes bent downward or sideways and thumb rising upwards.

    I consulted my doctor and some physiotherapists but their response was not encouraging.

    Then I thought of an exercise: bend the toes upwards and the thumb downward, hold it with hands for 5 minutes, repeating the same 3-4 times every day. I saw some recovery in few weeks. Next, while reading a book on Yoga I came across ‘ Tadasan ‘ a posture of body wherein you stand-up raising both hands upwards touching your ears, both the hills  raised and only toes bearing your entire body weight. Stand-up in this position for 1 or 2 minutes. Please do not try this without taking support from a wall, table, etc. initial few days until you are comfortable to do away with the support. It striked to me to walk in this position few yards at my house would b6 more helpful. This exercise further improved my toes position and I could maintain it for most part of the day. Since then I am continuing it as one of my daily exercises. Few months ago my medicines doses were increased to double due to overall progression of the disease but the clawed toes symptom does not relapse unless I have skipped the exercises more than 2 days in a week.

    I suggest your husband can try it.

    My view based on my experiences is that we can deal with many of the Parkinson’s symptoms by adopting different therapies / strategies for each one. Don’t take the experts views as final. Without disrespecting their medication advise, we can and should explore alternative or supplementory treatments viz. Yoga, exercises, meditation, engaging into activities that give us pleasure or relaxed body and mind, diet changes, etc.

     

     

     

     

  • I worked on accounting job for 20 years in a chemical  company in India that  was manufacturing dyes and related highly poisonous chemicals. Although my job did not include direct handling those chemicals, but there was 9 x 5 = 45 hours exposure to the air pollution prevailing in the nearby area. I believe this exposure was the root cause which manifested as PD 12 years after leaving that job. Exposure to toxic chemicals through air, water, food and especially plastic is globally considered to be a potential cause for PD.

    Then I moved several miles away in IT industry for 15 years where I used to work in a very clean, airconditioned premises but the job demanded high amount of work pressure affecting mental health. I believe changing to a stressful job and previous history of chemical exposure accelerated onset of what is known as young Parkinsinsm when I was 54.

  • Hi Mary,

    I didn’t hide the diagnosis of PD itself but maintained secret the hard times expected few years later as my PD advances. Because my Dr. assured that it will take few years for PD to start impact day-to-day movements and non-motor symptoms to manifest. Until then I will be able to do my job as a normal person. So I thought there’s no reason to scare my spouse and other family members right from day one. As time passes I would give them heads-up on upcoming conditions.

     

  • Very Good !

    Thank you for the update.

  • ravindra-kango

    Member
    August 15, 2022 at 8:43 am in reply to: Claw Toes in Parkinson’s Disease

    Tadasana or the Palm Tree Pose is a good stretching and loosing exercise for the entire body. Tadasana stretches the arms, the chest, the abdominal muscles, the spine and the leg muscles along with giving a sense of balance.

    Steps:

    1. Stand erect with legs slightly apart with the hands on the sides.
    2. Raise the hand above the head and look straight.
    3. Interlock the fingers and turn it upwards. The palms should be facing the sky.
    4. The gaze can be adjusted to look slightly above the horizontal level.
    5. Take a deep breath and stretch the arms, shoulders and chest upwards.
    6. Raise the heels so that the weight of the body is borne by the toes.
    7. Stretch the whole body from the feet to the head.
    8. Remain in this position for few seconds.
    9. Bring down the heels while breathing out.
    10. This is one round. One can practice up to 10 rounds.
    11. During the whole practice the eyes should remain steadily fixed in front little above the head level.

    Note:- The above content in this reply is taken from  https://www.yogicwayoflife.com/tadasana-the-palm-tree-pose/.

    The images or pictures of Tadasana poses are also available in this link. Please visit for more information, precautions, etc.

    For the clawed toes issue which is identified as a symptom of PD and not dystonia, my view is that one can just stand up on toes, raising heels slowly as much as possible using the hands to take support of a table or a horizontal bar. No need to raise hands above the head or walk. At least not until you are comfortable with standing without taking any support.

    Please consult your physiotherapist  or doctor if you have injury or other medical conditions related to your foot.