Dleivense’s earlier post may sound cruel, but it is at least a wake-up call to be clear about your relationship. It is not going to be what you thought you were taking on. ‘Boy friend’ covers a wide range of commitment, and it is not a good idea for your real sorrow and sympathy to guilt you into a commitment you never intended to make. Work out what you can do to help now, help him to consider all the options for the future, and think about the limit to what you are going to be willing to do. Those answers really are 'needs to know'. Best wishes and my own sympathy to both of you, Margaret.
Dance for Parkinson's is what I think is an excellent program for movement therapy, and is adapted to standing or being seated. Developed by professional ballet dancers, they've modified it to adapt to limitations created by Parkinson's.
https://danceforparkinsons.org/
If you watch the first video that pops up, you'll notice people with a variety of strengths and limitations, standing or sitting. That's one of the great aspects of the movement, that it can be adapted to individuals individually even though they're in classes.
Scroll down to about 1/2 of the page and you and your BF can try out some classes at home and see if they help him and/or if he's comfortable with them.
Here's a schedule; I believe they've been streaming videos due to CV 19.
Parkinson's Disease is a different journey for each patient. There are many symptoms that are the same for everyone and some symptoms that are unique to each person. Physicians are sometimes expected to deliver every piece of information particular to each specific patient. An overwhelming task. This article is intended to be a "Heads-up" on occurrences that may or may not happen during your personal PD journey. Items are not in any specific chronological order. This is FYI only. Always consult a physician.
PD is a Motion Disorder. Don't stop moving. Exercise is the only thing known to help slow the advancement of PD.
Your brain has a reservoir of chemicals that will last approximately ten years. Declines and plateaus occur.
Exercise, Exercise, Exercise.
Diet: Watch out for PROTEIN. It interferes with the absorption of Levodopa. Dairy products can really be a problem.
Keep on lights at night. Keep lights dim. Lights help prevent falls and can help minimize hallucinations.
Join a support group. They are not complainers, they are explainers.
GAD - General Anxiety Disorder. This is a biggie. Talk to your Doctor. Use meds but, also learn meditation to help control GAD. Learn what triggers your anxiety and take steps to minimize it before it happens.
Speech Therapy or dilation of the esophagus by a Gastro Dr. can help with swallowing issues. A teaspoon of honey may help a pill slide down the throat easily.
Use a pill crusher and add med to food or drink for quicker absorption or if swallowing is difficulty. It is okay to crush most meds. (Does not include Extended Release {ER} version)
Medications have side effects and "side effects are okay." Be wary! Observe and keep a journal of what happens when you take a med. Benefit versus risk. Which is worse for you, the PD symptom or the side effect that happens when you take a medication. Just a few of common side effects: hallucinations: may be visual and/or auditory impaired thinking personality change sleep disorders double vision
Sunlight may be the answer to a sleep disorder. Circadian rhythms might be out of sync.
Financial assistance. PD medicine can be costly, and it is for the rest of your life. Contact drug manufacturers, many have assistance programs. WARNING: There is a 2-year waiting period between receiving disability and receiving Medicare. This means No Insurance for two years. After a surgery with general anesthesia, there is a phenomenon that may occur: Music, playing over and over, but it is not really there.
Intimacy - Yes, please. It is okay. Discuss with physician or psychologist if problems occur.
Difficulty using computer? For Windows users, learn about "Ease of Access" in the Settings menu. Computer will read to you, type text as you talk and magnify screen.
Caregivers: Give them a break. As much fun as you are to take care of, your care partner needs their own time. A few hours a day, week, month or whatever you agree upon, be considerate and gracious. Remember: IT IS YOUR BODY, YOUR MIND, YOUR CHOICE
Go to parkinsons.org and get an AWARE IN CARE kit for your boyfriend and Top 10 Caregiver Essential Resources. If you need any info or support at anytime, I am always willing to help. I have dealt with PD for 18years.
Run! Sorry, after nine years of caregiving for my husband after a severe stroke I would not go through this again! Isolation has made our situation much worse!
I’m on different Parkinson’s forums, they all recommend Rock Steady Boxing. It’s beyond important to keep moving and this boxing is geared to each persons‘ ability, since the way he boxes today will be vastly in 10 years. There are people on these forums that even run marathons, although they are among the last to finish.
If he can devote time to moving, he can postpone a lot of trouble. Falls are prevalent when the disease advances - it’s called “The Falldown Disease”. It’s also a muscle wasting disease. Boxing, running, building muscle all help prevent falls and will do him a world of good down the road.
My Dad was diagnosed when he was 88, he’s probably had it for 15 years. So Rock Steady couldn’t help him. Now, at 93, he’s still in pretty good shape, for his age and diagnosis. He walks with a walker, has troubles with speech and swallowing (muscles involved). He’s had a lot of falls but has never been injured beyond some bruising, but he was diagnosed at an advanced stage.
Try to not borrow trouble. Don’t look at what might happen in 5 or 10 years, or even next month. Take one day at a time. Keep a positive outlook. Keep your neurologist or movement disorder doctor as your partner, find one you really like.
if you type “Parkinson’s” into a search engine, you should be able to find some forums to join, they are a wealth of information.
parkinsons.org is a good website for information. Amazon has great books about it both for the patient and the family. My LO was diagnosed at 52 and is 77 now.
Sorry to say it, but you also need to be prepared to change your life someday to be a caregiver of someone with both physical and mental decline. That is where I am now and I still love him, but I have no other life right now.
My mom was diagnosed late in life after the age of 80. It began with a hand tremor and she Progressed through all the stages. I thought it was only a motor issue but it can be much more. The cognitive decline And then difficulty swallowing in the last few months at the end was the most difficult to deal with. She recently passed at 87. I learned Parkinsons effects everyone differently and wish I asked more questions to be better prepared for the worst as we weren’t given a lot of Guideance. Physical and occupational therapy can be a big help. Looking ahead in having your home be adaptable for changing needs is also helpful. (mom went from walking with a walker to wheelchair.) Look into any facilities in your area that specializes in Parkinsons. Stay positive and learn as much as you can. Hope for the best, and prepare for what could come.
So sorry for your partner. Parkinson's can move fast it can move slow. Dementia and Parkinson's go hand in hand. A man from Church lived till her was 87 with Parkinson's. There was some mental decline but he was pretty with it till he passed.
https://danceforparkinsons.org/
If you watch the first video that pops up, you'll notice people with a variety of strengths and limitations, standing or sitting. That's one of the great aspects of the movement, that it can be adapted to individuals individually even though they're in classes.
Scroll down to about 1/2 of the page and you and your BF can try out some classes at home and see if they help him and/or if he's comfortable with them.
Here's a schedule; I believe they've been streaming videos due to CV 19.
https://danceforparkinsons.org/resources/dance-at-home
PD is a Motion Disorder. Don't stop moving. Exercise is the only thing known to help slow the advancement of PD.
Your brain has a reservoir of chemicals that will last approximately ten years. Declines and plateaus occur.
Exercise, Exercise, Exercise.
Diet: Watch out for PROTEIN. It interferes with the absorption of Levodopa. Dairy products can really be a problem.
Keep on lights at night. Keep lights dim. Lights help prevent falls and can help minimize hallucinations.
Join a support group. They are not complainers, they are explainers.
GAD - General Anxiety Disorder. This is a biggie. Talk to your Doctor. Use meds but, also learn meditation to help control GAD. Learn what triggers your anxiety and take steps to minimize it before it happens.
Speech Therapy or dilation of the esophagus by a Gastro Dr. can help with swallowing issues. A teaspoon of honey may help a pill slide down the throat easily.
Use a pill crusher and add med to food or drink for quicker absorption or if swallowing is difficulty. It is okay to crush most meds. (Does not include Extended Release {ER} version)
Medications have side effects and "side effects are okay." Be wary! Observe and keep a journal of what happens when you take a med.
Benefit versus risk. Which is worse for you, the PD symptom or the side effect that happens when you take a medication. Just a few of common side effects:
hallucinations: may be visual and/or auditory
impaired thinking
personality change
sleep disorders
double vision
Sunlight may be the answer to a sleep disorder. Circadian rhythms might be out of sync.
Financial assistance. PD medicine can be costly, and it is for the rest of your life. Contact drug manufacturers, many have assistance programs.
WARNING: There is a 2-year waiting period between receiving disability and receiving Medicare. This means No Insurance for two years.
After a surgery with general anesthesia, there is a phenomenon that may occur: Music, playing over and over, but it is not really there.
Intimacy - Yes, please. It is okay. Discuss with physician or psychologist if problems occur.
Difficulty using computer? For Windows users, learn about "Ease of Access" in the Settings menu. Computer will read to you, type text as you talk and magnify screen.
Caregivers: Give them a break. As much fun as you are to take care of, your care partner needs their own time. A few hours a day, week, month or whatever you agree upon, be considerate and gracious.
Remember:
IT IS YOUR BODY, YOUR MIND, YOUR CHOICE
Go to parkinsons.org and get an AWARE IN CARE kit for your boyfriend and Top 10 Caregiver Essential Resources.
If you need any info or support at anytime, I am always willing to help. I have dealt with PD for 18years.
If he can devote time to moving, he can postpone a lot of trouble. Falls are prevalent when the disease advances - it’s called “The Falldown Disease”. It’s also a muscle wasting disease. Boxing, running, building muscle all help prevent falls and will do him a world of good down the road.
My Dad was diagnosed when he was 88, he’s probably had it for 15 years. So Rock Steady couldn’t help him. Now, at 93, he’s still in pretty good shape, for his age and diagnosis. He walks with a walker, has troubles with speech and swallowing (muscles involved). He’s had a lot of falls but has never been injured beyond some bruising, but he was diagnosed at an advanced stage.
Try to not borrow trouble. Don’t look at what might happen in 5 or 10 years, or even next month. Take one day at a time. Keep a positive outlook. Keep your neurologist or movement disorder doctor as your partner, find one you really like.
if you type “Parkinson’s” into a search engine, you should be able to find some forums to join, they are a wealth of information.
https://www.michaeljfox.org/news/young-onset-parkinsons-disease