Not Working For Me

By carerbob

2 min read

I was diagnosed with Parkinson's about three years ago, at first my consultant was doubtful as to whether I had Parkinson's or not, I was not showing the usual symptoms, so I was taken off Parkinson's medication, I was o.k. for a few years, on a very lose dose of Madopar and then something tipped me over the edge. It was my birthday, great present, I saw the consultant and the mental health doctor, and a DaTscan was arranged for me. This showed I did have severe Parkinson's disease. One year later, I am on a very high dose of Madopar, plus numerous other tablets, for the Parkinson's, I think I take 25 a day, but some of which are for anxiety and depression and they help me. I am so grateful that we live in the UK. My medical bills would be horrendous, if we lived in the USA I probably wouldn't be able to afford them.

Non-motor symptoms

I have the non-motor version, of Parkinson's which does not show how bad you are, to others, as the feelings are on the inside, tremor etc., the family say you are looking well, how are they to know, or even begin to understand how dreadful I am feeling. I also have to take three blood pressure tablets day, for low blood pressure. I have fainted several times, my husband has had to pick me up off the floor, at least three times in the last two weeks. Meal times have become so difficult. I cannot chew meat and swallow it, it takes me about an hour to eat a very small meal, and I feel exhausted at the end of it. I would not want to go out for a meal. I would be too embarrassed.

I have been lucky if you could call it lucky, as since being diagnosed and me getting worse and worse we have had the lock downs, because of the Corona virus, I haven't seen my sister for six months, nor my 94 year old mother living in Wales, for a year, nor my family living in Spain. They won't think there is anything wrong with me, and expect me to behave as normal, i.e. traveling to Wales to see my mother and the plane journey to Spain. I am dreading it. They won't understand. I can't do these things. I think I have been a peculiar case, from the beginning, I wasn't showing or behaving like a person with Parkinson's but I had it and the medication, I have to take for it, just doesn't work for me.

Keep on hoping

I have been told it happens sometimes, I feel so sorry for my husband, he has become a full time carer, overnight. I go to bed sort of hopping I won't wake up again, but I love my husband, he is so good to me, and of course the rest of my family. I think there is a Robbie Williams song, where he says, I talk to God but he ain't listening, don't want to die, but I ain't keen on living either. Or something like that. I must be boring you people out there to death. I wish and wish and pray that they will find something to help with this horrible disease. We know there is a lot of research going on. We donate regularly to our local branch, of Parkinson's. We just have to keep on hoping.

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Krukar2012 Member
Carerbob, Your situation is tough, even overwhelming. You sound like a very strong person. We can only pray for a cure. God is always with us. Blessings, Mike
Marc Mitnick Member
Hi Carerbob, Thank you for writing to us. I am a Speech Pathologist [SLP] who has PD also. I can relate to your inability to chew and swallow meat. I would suggest that you see a Speech Pathologist for a Dysphagia [Swallowing] evaluation and treatment. Some suggestions the therapist may suggest are: cutting up your meat into smaller pieces or chopping it in a food processer with a little sauce and gravy. Divide up your meals into smaller portions to be eaten at each mealtime. Take smaller bites, chew slowly. If you have difficulty moving the food from the front of your mouth to the back, place the modified food consistency towards the back of the tongue and swallow. But for a personal list of recommendations that are safest for you to chew and swallow, please schedule an appointment with an SLP. Wishing you the best, Marc M., Moderator, ParkinsonsDisease.Net
1. Marc Mitnick Member
 <inline-mention username="carerbob" user-id="3044156"/> I am glad that the yogurt compensatory strategy works for you. Continued success! Marc M. Moderator, <a href='https://ParkinsonsDiseaseNet.com' target='_blank' rel='noopener noreferrer ugc'>ParkinsonsDiseaseNet.com</a>
Jstevens Member
Hi carerbob, I thank you for sharing. I learn so much from all of you who share your stories and struggles. I have felt isolated for so long. But now I have found you! I feel much of what you are going through. I also don’t exhibit an outward tremor, but it sure exists on the inside, doesn’t it? I try to describe it as sitting in an older vehicle with the motor running and the car vibrates and you vibrate along with it. That inside tremor makes me feel like I am going to fall even more. It is strange when you get the diagnosis of PD and you know you have problems, but everyone else says “you look great.” Then they expect you to act great. Which you definitely struggle with. I too, struggle with eating and swallowing. I don’t even want to go out in public anymore afraid of getting choked and drawing attention to myself then embarrassing my husband. Those are my feelings, not his. We have to remember that we have people who love us dearly. They don’t want to see us go. You feel like giving up. So do I at times. But we just can’t. I try to think of the things I am grateful for. I can sit outside and enjoy the weather when it’s nice. I can still spend quality time with my husband and we laugh. Try to find those things that you are grateful for. I am actually grateful that I have an internal tremor because it’s not noticeable. Yeah, for us! I knocked a big glass of water over the other day. I was starting to get upset and my husband looked at me and said “Honey, this is an easy fix. Don’t sweat the small stuff”. He’s right. We have to pick our battles to win the war. I think everyone one of us can win this war by sharing with each other and living our lives to the best of our abilities. We can find solace in each other. Today I am grateful that I met you. You are a kindred spirit. Message me anytime. Judy
carerbob Member
Hi Judy, I am sorry I have taken so long to reply. my heart goes out to you, I am sorry you are also suffering in this way. I cannot stand it when people keep saying how well I look, If only they knew, but how can they, how could they. I still haven't seen my mother, who is 94 and lives in Wales. She has problems now, she is in agony with painful back and hip, on both of which she has had operations previously. We live in Wokingham. which is 124 miles away. She is lucky she has friends and the social services are very good. I would be of no help to her, but I know when she sees me she will think there is nothing wrong with me. It is very difficult because when the medication, which doesn't work very well, really wears off, the Parkinsonism takes over and I feel really bad. The mornings are my best times, but even then, I knock things over, stagger down our hallway, fall against the wall, and these are my good times. Afternoons about 3.30pm I get the most terrible pain in my neck and have to either sit down or lie down, it is agony. I also suffer with low blood pressure, I have medication for this, it helps but not all the time, sometimes when I stand up I have to sit back down again I feel like I am going to pass out. I am not trying to depress you, but I just want you to know a little about how I feel, because of the looking well comments, both from my husbands friends, some of the neighbours and recently my sister, having not seen her for about six month, She is the first member of the family I have seen before the lock down, about six months ago. I could tell she was looking at me, in a way that said, you don't look too bad to me. . Brother-in-law had to say your looking well. Whilst they were with us, the medication wore off and I started to stagger, and have what I call the Parkinsons feelings when waving them, off I think, but I am not sure, my sister could see there was something wrong with me, but I know having the non-motor symptoms of Parkinsons, we do not show outwardly how bad we are feeling. I can almost leap out of my chair, getting in and out of my husband small sports car is no problem, my husband has more trouble. than me. The symptoms we suffer are numerous and soul destroying, usually, undetectable, to anyone else. Perhaps this is better than having people look at you and see the motor side of Parkinsons, which must be horrible, but I understand that the medication works better for the motor symptoms. I feel like my life is over and that I am dragging my husband down with me. We also have family, in Spain. I don't how if I will or can cope with the journey to Spain, when the lock down is lifted, my grand-daughter, is 11 years old and my grandson 10 years old. They only see me on skype, if I don't feel well I just wander off and then come back again. I can and do hide it. If they come. to stay, they will see there is something wrong. Also I agree with you about meals, eating is a nightmare and exhausting, it is the one time, that I really show I have Parkinsons, so no eating out. My mother will not understand this at all, we have always gone out for meals, she really lives for going out, and will expect to be taken, when we next see her, which will have to be soon. I feel for her because she is all on her own and in pain. I know I am lucky with my partner, he is wonderful man and you seem to have someone who cares. I will write to you again, once I have seen my mother. Her first words will be you are looking well.AAAAAAAAH .