He’s my brother : From the onset my younger... - Cure Parkinson's

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He’s my brother

Kolya44 profile image
18 Replies

From the onset my younger brother didn’t realize what Parkinson’s Disease could do. My sisters and I tried everything to get him more involved but he was “lazy” or just gave up? Now it is full blown. I have difficulty understanding how to treat him. Does he have pain? Is he angry? How should I act???? Mike in Florida

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Kolya44 profile image
Kolya44
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18 Replies
park_bear profile image
park_bear

See if you can interest him in high-dose thiamine.

highdosethiamine.org/

Kolya44 profile image
Kolya44 in reply to park_bear

He has so many other physical problems. His imbalance and regidity seems overwhelming. This caused injuries to his arms he dislocated his shoulder and that’s beyond help. Supplements would have been a tremendous help early on. Oh I wish he would have done things differently.

laglag profile image
laglag

It might be good to sit down with him and talk about it, ask him how he feels, tell him you want to understand so you can help him & support him. He may have pain, he may be angry, he may feel alone. Everyone that has PD is different. It's often called the snowflake disease because everyone is has different symptoms & different degrees of progression. You might want to buy a book or look on the internet & learn a little about the disease. That will more than likely go a long way with a PwP (Person with Parkinson's). We often feel lonely because people will drift away from us because they don't know enough about it & don't know what to say or do. Showing that you care goes a long way. He probably was ready to give up rather than lazy. Look up rocksteadyboxing.org. It's a gym for PwP's. Go with him to check it out. Don't push him too hard but try to encourage him to be more active. Many PwP's are depressed, but they may deny it, so talk to him about that. If he's not on an antidepressant, he may need to be. That's another thing, if he has a spouse that goes with him to the doctor fine, but if he goes alone, you and your sisters go with him sometime, take turns. He probably only goes every 6 months so it shouldn't take up much of your time. Ask the doctor any questions you might have. He also may need help running errands, offer to do some things for him. He is living with a horrible disease. Make him feel loved.

ddmagee1 profile image
ddmagee1 in reply to laglag

A practical, informative, supportive reply! Thank you for sharing. Sometimes I feel that people have no idea what it’s like to live with a disease, such as the PD I have to deal with every day. Sinemet helps relieve symptoms, but it also masks the seriousness of how cruel this disease can get, as it progresses, for some. I’m at the point, now, where both sides of my body are affected, and problems with my autonomic system, have become very difficult, at times. Swallowing is affected, rigidity, stiffness, loss of balance, disturbed sense of smell and taste, urinary problems, constipation, rapid heart beat, and a staggering walk, along with peripheral neuropathy, and masked face ( numbness ), all plague me, from time to time. People, including family members, have drifted away, making me feel lonely, and like a ‘leper’ or something! My daughter and wife, who love me, are very supportive, and, sometimes, I feel that’s all I have, and, perhaps, all I need, to help me cope. My attitude is to make the best out of what I can do, not dwelling on things that are difficult for me, or what I’ve lost. It is what it is, and I want to live the best life I can, in spite of having to deal with having PD, and Cerebellar Ataxia! Fortitude, having a positive attitude, and fighting each day to remain mobile and active, is my approach, to dealing with difficulties that I face!

mgregor6 profile image
mgregor6 in reply to ddmagee1

I feel your pain. Literally. Worse thing for me can be the loneliness. I am thankful for this forum!

Kwinholt profile image
Kwinholt in reply to mgregor6

❤️ I understand greatly. Karen

Kolya44 profile image
Kolya44 in reply to mgregor6

I feel for my brother's loneliness and sorry that he daughters are so far away. I will try to see him more often cause this disease is really making me more depressed.

Kwinholt profile image
Kwinholt in reply to ddmagee1

❤️ Standing beside you and understand . Karen

Kolya44 profile image
Kolya44 in reply to ddmagee1

Thank you for sharing your battle with PD. I love my brother and will do anything for him and so will my sisters. He can hardly feed himself. He needs help dressing. He dislocated his shoulder and he really can’t write with it. Has trouble swallowing. He is alone in his room in assisted living. He has lost weight because he is unable to move. He speaks very low and that is difficult.

My brother has all the symptoms you describe but his are severe to the point of can it be any worse. Now it seems it is getting worse. He really can’t move about on his own now. He has the lift chair and probably sleeps in it rather then the bed.

You seem involved with doing things and trying to move. That is where my brother failed at. I look at him and get angry cause he didn’t exercise or did he want to work at boxing or cycling. I tried going with him to support groups it he didn’t “need it”, I was trying to get info on PD and get him to read it. Heck no. You know the outcome ow of your situation because you want to heat it. I don’t think my brother wanted that.

It is depressing as hell. I stand in front of him and wonder if he can see me or the TV. He can’t switch channels cause has trouble with dexterity. Can it get any worse.? The staring gets me. I’m sounding off cause I want someone to hear what I am going through. Thanks for All the replies and support. The reaching out.

ddmagee1 profile image
ddmagee1 in reply to Kolya44

Thanks so much for sharing! It really is difficult to live with advancing PD. A staring, blank face is not your brother’s fault! I force myself to do facial exercises every day, because of numbness in my face. I force myself to smile, and do breathing exercises, to help me speak louder. My wife used to make fun of my sometimes quavering voice. She thought I was making it up, and it irritated her. After a few years, now, she realizes that my shaky voice, at times, is because of PD, not because I was purposely acting infirm or anything. My local PD group gave me an exercise booklet, for PD patients. It is very helpful, to do range of motion, easy exercises, to limber up stiffness and jerkiness of muscles. Perhaps you could ask your local group for a list of exercises, that would help your brother. My dexterity isn’t too good at times. I do hand exercises every day. I have the cogwheel rigidity and peripheral neuropathy in my hands, that make things, like buttoning buttons, extremely difficult. The range of motion exercises really help. I refuse to give in and let PD conquer me. So, I’m at the stage where I really have to work at exercising and making myself move and function better, otherwise, my body would takeover and the stiffness would just get worse. There are times when just stepping up into a car, is a production for me, because it’s so hard to lift my leg up into the car. Usually, most people don’t give second thoughts, into getting into a car. Sinemet does help me, but not all the time, or with all of my symptoms. Every day I challenge myself to keep myself moving in as natural looking manner as possible. Some days are better than others. I know that if I start to feeling sorry for myself, and become too dependent on others, that my ability to function could become very impaired. I don’t want that to happen, any time soon! So, I appreciate your comments. It’s very hard for caregivers to see their loved ones suffer from the debilitating effects, of living with PD, and, because of the progression of the disease, sometimes victims may seem to be lazy, and slow, and uncoordinated. That is the nature of the progressive disease. Helping the person with PD, to help themselves by exercising more and forcing themselves to try and make smoother movements, by encouraging and working with them on range of motion exercises, and swallowing and voice and facial exercises, may help. Depression and apathy, can be a problem for many advancing PD patients, also! I can empathize with your frustrations of trying to help your brother. Hang in there!

Kolya44 profile image
Kolya44 in reply to ddmagee1

thanks so much DD for your openness and honesty. It seems like my brother is beyond your state where you can still try to do things on your own. With this move to a "group home" here, I think he will get more help and will not feel alone. I am still there for him and will try harder to get him to continue the therapy inspire of his diminished capacity. God Bless you. Mike

ddmagee1 profile image
ddmagee1 in reply to Kolya44

Thanks Mike, for your reply. I appreciate your sharing. It’s sad that your brother is at that point, and you have to do what you have to do, for his sake. I will keep on trying to keep myself from getting to the point, where I have to go in a group home, or nursing home, for as long as I can. 20 years is a long time, to have PD, and so it’s inevitable that progression may occur, like it has with your brother. Wishing you and your brother the best! Doug

Kolya44 profile image
Kolya44 in reply to laglag

thank you Lag. for your thoughtful reply. It seems that nothing is really happening and it is at the end of a long journey for my brother. He had this disease for over 20 years. I can't wait to see what happens at the new nursing home that he is moving to. Could make a world of difference in his "outlook".

Mike

rebtar profile image
rebtar

I agree completely with lag lag. If your relationship with him has been distant, it’s time to get closer and let him know you’re there to support and help. If you’ve been close before, and he’s distancing himself, it could be depression which is common in PD and for which there is treatment. He may be in pain, it’s a common symptom but not everyone has it. if he was in denial, which is also common, he probably isn’t anymore if his symptoms are now pronounced.

If you are interested, and/or he is, there’s a naturopathic doctor named Laurie Mischley who has dedicated her practice and research exclusively to PD and who has a lot of strategies to diminish symptoms, improve quality of life and perhaps slow progression. She’s just put out a year long course (one class every two weeks) which covers all the basics of PD as well as her treatment strategies, and it’s not expensive, and very helpful information.

educationismedicine.com

Other than that, exercise is fundamental to your brother’s quality of life from here on out. It is the only thing that has been demonstrated to slow progression. I exercise daily, and at least 5 times per week it’s intensive enough to sweat profusely, raising my heart rate to 80% of maximum.

Hiawatha1 profile image
Hiawatha1 in reply to rebtar

Hello rebtar, you need to remove the period at the end of your link:

From:

educationismedicine.com.

To:

educationismedicine.com

rebtar profile image
rebtar in reply to Hiawatha1

Thanks. Done.

Parkinson’s relief.

Facebook group

“Parkinson’s thiamine hcl”

laglag profile image
laglag

Just happened to be searching for something & re-read this post & was curious how your brother is doing?

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